Aphasia Access Conversations

  Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic conditions. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer. In this episode, Lyssa Rome interviews Dr. Suma Devanga about collaborative referencing, gesture, and building rich communicative environments for people with aphasia.   Guest info Dr. Suma Devanga is an assistant professor in the Department of Communication Disorders and Sciences at Rush University Medical Center, Chicago, where she also serves as the director of the Aphasia Research Lab. She completed her PhD in Speech and Hearing science from the University of Illinois. Urbana Champaign in 2017. Dr. Devanga is interested in studying aphasia interventions and their impacts on people's everyday communication. Her recent work includes investigating a novel treatment called the Collaborative Referencing Intervention for Individuals with aphasia, using discourse analysis methods and patient reported outcome measures, studying group-based treatments for aphasia, and studying the use of gestures in aphasia. Additionally, she is involved in teaching courses on aphasia and cognitive communication disorders to graduate SLP students at Rush. She also provides direct patient care and graduate clinical supervision at Rush outpatient clinics.   Listener Take-aways In today's episode you will: Understand the role of collaborative referencing in everyday communication. Learn about Collaborative Referencing Intervention. Describe how speech-language pathologists can create rich communicative environments.   Edited transcript   Lyssa Rome Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California, and I see clients with aphasia and other neurogenic communication disorders in my LPAA-focused private practice. I'm also a member of the Aphasia Access podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.   I'm today's host for an episode that will feature Dr. Suma Devanga, who is selected as a 2024 Tavistock Trust for Aphasia Distinguished Scholar, USA and Canada. In this episode, we'll be discussing Dr. Devanga's research on collaborative referencing, gesture, and building rich communicative environments for people with aphasia.   Suma Devanga is an assistant professor in the Department of Communication Disorders and Sciences at Rush University Medical Center, Chicago, where she also serves as the director of the Aphasia Research Lab. She completed her PhD in Speech and Hearing science from the University of Illinois. Urbana Champaign in 2017. Dr. Devanga is interested in studying aphasia interventions and their impacts on people's everyday communication. Her recent work includes investigating a novel treatment called the Collaborative Referencing Intervention for Individuals with aphasia, using discourse analysis methods and patient reported outcome measures, studying group-based treatments for aphasia, and studying the use of gestures in aphasia. Additionally, she is involved in teaching courses on aphasia and cognitive communication disorders to graduate SLP students at Rush. She also provides direct patient care and graduate clinical supervision at Rush outpatient clinics. Suma Devanga, thank you so much for joining us today. I'm really happy to be talking with you.   Suma Devanga Thank you, Lyssa, thank you for having me. And I would also like to thank Aphasia Access for this wonderful opportunity, and the Tavistock Trust for Aphasia and the Duchess of Bedford for recognizing my research through the Distinguished Scholar Award.   Lyssa Rome So I wanted to start by asking you how you became interested in aphasia treatment.   Suma Devanga I became interested in aphasia during my undergraduate and graduate programs, which was in speech language pathology in Mysore in India. I was really drawn to this population because of how severe the consequences were for these individuals and their families after the onset of aphasia. So I met hundreds of patients and families with aphasia who were really devastated by this sudden condition, and they were typically left with no job and little means to communicate with family and friends. So as a student clinician, I was very, very motivated to help these individuals in therapy, but when I started implementing the treatment methods that I had learned, what I discovered was that my patients were showing improvements on the tasks that we worked on in therapy. Their scores on clinical tasks also were improving, but none of that really mattered to them. What they really wanted was to be able to easily communicate with family, but they continued to struggle on that, and none of the cutting-edge treatment methods that I learned from this highly reputable program in India were impacting my patients' lives.   So I really felt lost, and that is when I knew that I wanted to do a PhD and study this topic more closely, and I was drawn to Dr. Julie Hengst's work, which looked at the bigger picture in aphasia. She used novel theoretical frameworks and used discourse analysis methods for tracking patient performance, as opposed to clinical tests. So I applied to the University of Illinois PhD program, and I'm so glad that she took me on as her doctoral student. And so that is how I ended up moving from India to the US and started my work in aphasia.   Lyssa Rome I think that a lot of us can probably relate to what you're describing—that just that feeling of frustration when a patient might improve on some sort of clinical tasks, but still says this is not helping me in my life, and I know that for me, and I think for others, that is what has drawn us to the LPAA.   I wanted to sort of dive into your research by asking you a little bit more about rich communicative environments, and what you mean by that, and what you mean when you talk about or write about distributed communication frameworks.   Suma Devanga So since I started my PhD, I have been interested in understanding how we can positively impact everyday communication for our patients with aphasia. As a doctoral student, I delved more deeply into the aphasia literature and realized that what I observed clinically with my patients in India was consistent with what was documented in the literature, and that was called the clinical-functional gap. And this really refers to the fact that we have many evidence-based aphasia treatments that do show improvements on clinical tasks or standardized tests, but there is very limited evidence on these treatments improving the functional use of language or the everyday communication, and this remains to be true even today.   So I think it becomes pretty important to understand what we are dealing with, like what is everyday communication? And I think many aphasia treatments have been studying everyday communication or conversational interactions by decontextualizing them or reducing them into component parts, like single words or phrases, and then we work our way up to sentence structures. Right? So this approach has been criticized by some researchers like Clark, who is an experimental psychologist, and he called such tasks as in vacuo, meaning that they are not really capturing the complexity of conversational interactions. So basically, even though we are clinicians, our ultimate goal is improving everyday communication, which is rich and emergent and complex, we somehow seem to be using tasks that are simplified and that removes all of these complexities and focuses more on simple or specific linguistic structures. So to understand the complexities of everyday communication, we have shifted to the distributed communication framework, which really originates from the cultural historical activity theories and theories from linguistic anthropology.   Dr. Julie Hengst actually proposed the distributed communication theory in her article in the Journal of Communication Disorders in 2015, which highlights that communication is not just an individual skill or a discrete concept, but it is rather distributed. And it is distributed in three ways: One is that it is distributed across various resources. We communicate using multiple resources, not just language. We sign, we use gestures, or facial expressions. We also interpret messages using such resources like dialects and eye gaze and posture, the social context, cultural backgrounds, the emotional states that we are in, and all of that matters. And we all know this, right? This is not new, and yet, we often give credit to language alone for communication, when in reality, we constantly use multiple resources. And the other key concept of distributed communication theory is that communication is embedded in socio- cultural activities. So depending on the activity, which can be a routine family dinnertime conversation or managing relationships with your co workers, the communicative resources that you use, their motives, and the way you would organize it, all of that would vary. And finally, communication is distributed across time. And by that we mean that people interpret and understand present interactions through the histories that they have experienced over time. For example, if you're at work and your manager says you might want to double check your reports before submitting them based on prior interactions with the manager and the histories you've shared with them, you could interpret that message either as a simple suggestion or that there is a lack of trust in your work. So all in all, communication, I think, is a joint activity, and I think we should view it as a joint activity, and it depends on people's ability to build common ground with one another and draw from that common ground to interpret each other's messages.   Lyssa Rome I feel like that framework is really helpful, and it makes a lot of sense, especially as a way of thinking about the complexity of language and the complexity of what we're trying to do when we are taking a more top-down approach. So that's the distributed communication theory. And it sounds like the other framework that has really guided your research is rich communicative environments. And I'm wondering if you could say a little bit more about that.   Suma Devanga Absolutely. So this work originates from about 80 years of research in neuroscience, where rodents and other animals with acquired brain injuries showed greater neuroplastic changes and improved functions when they were housed in complex environments. In fact, complex environments are considered to be the most well replicated approach to improve function in animal models of acquired brain injury.   So Dr. Julie Hengst, Dr. Melissa Duff, and Dr. Theresa Jones translated these findings to support communication for humans with acquired brain injuries. And they called it the rich communicative environments. The main goal of this is to enrich the clinical environments. And how we achieve that is by ensuring that there is meaningful complexity in our clinical environments, and that you do that by ensuring that our patients, families, and clinicians use multimodal resources, and also to aim for having multiple communication partners within your sessions who can fluidly shift between various communicative roles, and to not just stay in that clinician role, for example.   Another way to think about enriching clinical environments is to think about ensuring that there is voluntary engagement from our patients, and you do that by essentially designing personally meaningful activities, rather than focusing on rehearsing fixed linguistic form or having some predetermined goals.   And the other piece of the enrichment is, how do we ensure there is a positive experiential quality for our patients within our sessions. And for this rather than using clinician-controlled activities with rigid interactional roles, providing opportunities for the patients to share stories and humor would really, you know, ensure that they are also engaging with the tasks with you and having some fun. So all of this put together would lead to a rich communicative environment.   Lyssa Rome It sounds like what you're describing is the kind of speech therapy environment and relationship that is very much person-centered and focused on natural communication, or natural communicative contexts and the kinds of conversations that people have in their everyday lives, rather than more sort of strict speech therapy protocol that might have been more traditional. I also want to ask you to describe collaborative referencing and collaborative referencing intervention.   Suma Devanga Yes, absolutely. So traditionally, our discipline has viewed word-finding or naming as a neurolinguistic process where you access semantic meanings from a lexicon, which you use to generate verbal references. And that theoretical account conceptualizes referencing as an isolated process, where one individual has the skill of retrieving target references from their stores of linguistic forms and meanings, right? So in contrast to that, the distributed communication perspective views referencing as a process where speakers' meanings are constructed within each interaction, and that is based on the shared histories of experiences with specific communication partners and also depending on the social and physical contexts of the interaction as well.   Now this process of collaborative referencing is something that we all do every single day. It is not just a part of our everyday communication, but without collaborative referencing, you cannot really have a conversation with anyone. You need to have some alignment, some common ground for communicating with others. This is a fundamental feature of human communication, and this is not new. You know, there is lots of work being done on this, even in childhood language literature as well.   Collaborative referencing was formally studied by Clark, who is the experimental psychologist. And he studied this in healthy college students, and he used a barrier task experiment for it. So a pair of students sat across from each other with a full barrier that separated them so they could not see each other at all, and each student had a board that was numbered one through 12, and they were given matching sets of 12 pictures of abstract shapes called tangrams. One participant was assigned as the director, who arranged the cards on their playing board and described their locations to the other, who served as the matcher and matched the pictures to their locations on their own board. So the pair completed six trials with alternating turns, and they use the same cards with new locations for each trial. And what they found was that the pairs had to really collaborate with each other to get those descriptions correct so that they are placed correctly on the boards.   So in the initial trials, the pairs had multiple turns of back and forth trying to describe these abstract shapes. For example, one of the pictures was initially described as “This picture that looks like an angel or something with its arms wide open.” And there had to be several clarifying questions from the partner, and then eventually, after playing with this picture several times, the player just had to say “It's the angel,” and the partner would be able to know which picture that was so as the pairs built their common ground, the collaborative effort, or the time taken to complete each trial, and the number of words they used and the number of turns they took to communicate about those pictures declined over time, and the labels itself, or the descriptions of pictures, also became more streamlined as the as time went by.   So Hengst and colleagues wanted to study this experiment in aphasia, TBI, amnesia, and Alzheimer's disease as well. So they adapted this task to better serve this population and also to align with the distributed communication framework. And surprisingly, they found consistent results that despite aphasia or other neurological conditions, people were still able to successfully reference, decrease collaborative effort over time and even streamline their references. But more surprisingly, people were engaged with one another. They were having really rich conversations about these pictures. They were sharing jokes, and really seemed to be enjoying the task itself.   So Hengst and colleagues realized that this has a lot of potential, and they redesigned the barrier task experiment as a clinical treatment using the principles of the distributed communication framework and the rich communicative environment. So that redesign included replacing the full barrier with a partial barrier to allow multimodal communication, and using personal photos of the patients instead of the abstract shapes to make it more engaging for the patients, and also asking participants to treat this as a friendly game and to have fun. So that is the referencing itself and the research on collaborative referencing, and that is how it was adapted as a treatment as well.   And in order to help clinicians easily implement this treatment, I have used the RTSS framework, which is the rehabilitation treatment specification system, to explain how CRI works and how it can be implemented. And this is actually published, and it just came out in the most recent issue in the American Journal of Speech Language Pathology, which I'm happy to share.   Lyssa Rome And we'll put that link into the show notes.   Suma Devanga Perfect. So CRI is designed around meaningful activities like the game that authentically provides repeated opportunities for the client and the clinician to engage in the collaborative referencing process around targets that they really want to be talking about, things that are relevant to patients, everyday communication goals, it could be things, objects of interest, and not really specific words or referencing forms.   So the implementation of the CRI involves three key ingredients. One is jointly developing the referencing targets and compiling the images so clinicians would sit down with the patients and the families to identify at least 30 targets that are meaningful and important to be included in the treatment. And we need two perspectives, or two views, or two pictures related to the same target that needs to be included in the treatment. So we will have 60 pictures overall. An example is two pictures from their wedding might be an important target for patients to be able to talk about. Two pictures from a Christmas party, you know, things like that. So this process of compilation of photos is also a part of the treatment itself, because it gives the patients an opportunity to engage with the targets.   The second ingredient is engaging in the friendly gameplay itself. And the key really here is the gameplay and to treat it as a gameplay. And this includes 15 sessions with six trials in each session, where you, as the clinician and the client will both have matching sets of 12 pictures, and there is a low barrier in between, so you cannot see each other's boards, but you can still see the other person. So you will both take turns being the director and the matcher six times, and describe and match the pictures to their locations, and that is just the game. The only rule of the game is that you cannot look over the barrier. You are encouraged to talk as much as you like about the pictures. In fact, you are encouraged to talk a lot about the pictures and communicate in any way.   The third ingredient is discussing and reflecting on referencing. And this happens at the end of each session where patients are asked to think back and reflect and say what the agreed upon label was for each card. And this, again, gives one more opportunity for the patients to engage with the target.   The therapeutic mechanism, or the mechanism of action, as RTSS likes to call it, is the rich communicative environment itself, you know, and how complex the task is, and how meaningful and engaging the task has to be, as well as the repeated engagement in the gameplay, because we are doing this six times in each session, and we are repeatedly engaging with those targets when describing them and placing them.   So what we are really targeting with CRI is collaborative referencing and again, this does not refer to the patient's abilities to access or retrieve those words from their stores. Instead, we are targeting people's joint efforts in communicating about these targets, their efforts in building situated common ground. That's what we are targeting. We are targeting their alignment with one another, and so that is how we define referencing. And again, we are targeting this, because that is how you communicate every day.   Lyssa Rome That sounds like a really fascinating and very rich intervention. And I'm wondering if you can tell us a little bit about the research that you've done on it so far.   Suma Devanga Absolutely. So in terms of research on CRI thus far, we have completed phase one with small case studies that were all successful, and my PhD dissertation was the first phase two study, where we introduced an experimental control by using a multiple-probe, single-case experimental design on four people with aphasia, and we found significant results on naming. And since then, I have completed two replication studies in a total of nine participants with aphasia. And we have found consistent results on naming. In terms of impact on everyday interactions, we have found decreased trouble sources, or communicative breakdowns, you can call it, and also decreased repairs, both of which indicated improved communicative success within conversational interactions. So we are positive, and we plan to continue this research to study its efficacy within a clinical trial.   Lyssa Rome That's very encouraging. So how can clinicians target collaborative referencing by creating a rich communicative environment?   Suma Devanga Yeah, well, CRI is one approach that clinicians can use, and I'm happy to share the evidence we have this far, and there is more to come, hopefully soon, including some clinical implementation studies that clinicians can use. But there are many other ways of creating rich communicative environments and targeting referencing within clinical sessions. I think many skilled clinicians are already doing it in the form of relationship building, by listening closely to their patients, engaging with them in authentic conversations, and also during education and counseling sessions as well.   In addition to that, I think group treatment for aphasia is another great opportunity for targeting collaborative referencing within a rich communicative environment. When I was a faculty at Western Michigan University, I was involved in their outpatient aphasia program, where they have aphasia groups, and patients got to select which groups they want to participate in. They had a cooking group, a music group, a technology group, and so on. And I'm guessing you do this too at the Aphasia Center of California. So these groups definitely create rich communicative environments, and people collaborate with each other and do a lot of referencing as well. So I think there is a lot that can be done if you understand the rich communicative environment piece.   Lyssa Rome Absolutely. That really rings true to me. So often in these podcast interviews, we ask people about aha moments, and I'm wondering if you have one that you wanted to share with us.   Suma Devanga Sure. So you know how I said that getting the pictures for the CRI is a joint activity? Patients typically select things that they really want to talk about, like their kids' graduation pictures, or things that they are really passionate about, like pictures of their sports cars, or vegetable gardens, and so on. And they also come up with really unique names for them as well, while they are playing with those pictures during the treatment. And when we start playing the game, clinicians usually have little knowledge about these images, because they're all really personal to the patients, and they're taken from their personal lives, so they end up being the novices, while the patients become the experts. And my patients have taught me so much about constructing a house and all about engines of cars and things like that that I had no knowledge about. But in one incident, when I was the clinician paired with an individual with anomic aphasia, there was a picture of a building that she could not recognize, and hence she could not tell me much at all. And we went back and forth several times, and we finally ended up calling it the “unknown building.” Later, I checked my notes and realized that it was where she worked, and it was probably a different angle, perhaps, which is why she could not recognize it. But even with that new information, we continue to call it the “unknown building,” because it became sort of an internal joke for us. And later I kept thinking if I had made a mistake and if we should have accurately labeled it. That is when it clicked for me that CRI is not about producing accurate labels, it is about building a common ground with each other, which would help you successfully communicate with that person. So you're targeting the process of referencing and not the reference itself, because you want your patients to get better at the process of referencing in their everyday communication. And so that was my aha moment.   Lyssa Rome Yeah, that's an amazing story, because I think that that gets to that question sort of of the why behind what we're doing, right? Is it to say the specific name? I mean, obviously for some people, yes, sometimes it is. But what is underlying that? It's to be able to communicate about the things that are important to people. I also wanted to ask you about another area that you've studied, which is the use of gesture within aphasia interventions. Can you tell us a little bit more about that?   Suma Devanga Yes. So this work started with my collaboration with my friend and colleague, Dr. Mili Mathew, who is at Molloy University in New York, and our first work was on examining the role of hand gestures in collaborative referencing in a participant who had severe Wernicke's aphasia, and he frequently used extensive gestures to communicate. So when he started with CRI his descriptions of the images were truly multimodal. For example, when he had to describe a picture of a family vacation in Cancun, he was, you know, he was verbose, and there was very little meaningful content that was relevant in his spoken language utterances. But he used a variety of iconic hand gestures that were very meaningful and helpful to identify what he was referring to. As the sessions went on with him, his gestural references also became streamlined, just like the verbal references do, and that we saw in other studies. And that was fascinating because it indicated that gestures do play a big role in the meaning-making process of referencing.   And in another study on the same participant, we explored the use of hand gestures as treatment outcome measures. This time, we specifically analyzed gestures used within conversations at baseline treatment, probe, and maintenance phases of the study. And we found that the frequency of referential gestures, which are gestures that add meaning, that have some kind of iconics associated with them, those frequencies of gestures decreased with the onset of treatment, whereas the correct information units, or CIUS, which indicate the informativeness in the spoken language itself, increased. So this pattern of decrease in hand gestures and increase in CIUS was also a great finding. Even though this was just an exploratory study, it indicates that gestures may be included as outcome measures, in addition to verbal measures, which we usually tend to rely more on. And we have a few more studies coming up that are looking at the synchrony of gestures with spoken language in aphasia, but I think we still have a lot more to learn about gestures in aphasia.   Lyssa Rome It seems like there that studying gestures really ties in to CRI and the rich communicative environments that you were describing earlier, where the goal is not just to verbally name one thing, but rather to get your point across, where, obviously, gesture is also quite useful. So I look forward to reading more of your research on that as it comes out. Tell us about what you're currently working on, what's coming next.   Suma Devanga Currently, I am wrapping up my clinical research grant from the ASH Foundation, which was a replication study of the phase two CRI so we collected data from six participants with chronic aphasia using a multiple-probe, single-case design, and that showed positive results on naming, and there was improved scores on patient reports of communication confidence, communicative participation, and quality of life as well. We are currently analyzing the conversation samples to study the treatment effects.   I also just submitted a grant proposal to extend the study on participants with different severities of aphasia as well. So we are getting all the preliminary data at this point that we need to be able to start a clinical trial, which will be my next step.   So apart from that, I was also able to redesign the CRI and adapt it as a group-based treatment with three participants with aphasia and one clinician in a group. I actually completed a feasibility study of it, which was successful, and I presented that at ASHA in 2023. And I'm currently writing it up for publication, and I also just secured an internal grant to launch a pilot study of the group CRI to investigate the effects of group CRI on communication and quality of life.   Lyssa Rome Well, that's really exciting. And again, I'm really looking forward to reading additional work as it comes out. As we wrap up. What do you want clinicians to take away from your work and to take away from this conversation we've had today?   Suma Devanga Well, I would want clinicians to reflect on how their sessions are going and think about how to incorporate the principles of rich communicative environments so that they can add more meaningful complexity to their treatment activities and also ensure that their patients are truly engaging with the tasks and also having some fun. And I would also tell the clinicians that we have strong findings so far on CRI with both fluent and non-fluent aphasia types. So please stay tuned and reach out to me if you have questions or want to share your experiences about implementing this with your own patients, because I would love to hear that.   Lyssa Rome Dr. Suma Devanga, it has been great talking to you and hearing about your work. Thank you so much for sharing it with us.   Suma Devanga It was fantastic talking about my work. Thank you for giving me this platform to share my work with you all. And thank you, Lyssa for being a great listener.   Lyssa Rome Thanks also to our listeners for the references and resources mentioned in today's show. Please see our show notes. They're available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of aphasia. Access. For Aphasia Access Conversations. I'm Lyssa Rome.       References   Devanga, S. R. (2025). Collaborative Referencing Intervention (CRI) in Aphasia: A replication and extension of the Phase II efficacy study. American Journal of Speech-Language Pathology. Advance online publication. https://doi.org/10.1044/2024_AJSLP-24-00226   Devanga, S. R., Sherrill, M., & Hengst, J. A. (2021). The efficacy of collaborative referencing intervention in chronic aphasia: A mixed methods study. American Journal of Speech Language Pathology, 30(1S), 407-424. https://doi.org/10.1044/2020_AJSLP-19-00108    Hengst, J. A., Duff, M. C., & Jones, T. A. (2019). Enriching communicative environments: Leveraging advances in neuroplasticity for improving outcomes in neurogenic communication disorders. American Journal of Speech-Language Pathology, 28(1S), 216–229. https://doi.org/10.1044/2018_AJSLP-17-0157   Hengst, J. A. (2015). Distributed communication: Implications of cultural-historical activity theory (CHAT) for communication disorders. Journal of Communication Disorders, 57, 16–28. Https://doi.org/10.1016/j.jcomdis.2015.09.001   Devanga, S. R., & Mathew, M. (2024). Exploring the use of co-speech hand gestures as treatment outcome measures for aphasia. Aphasiology. Advanced online publication. https://doi.org/10.1080/02687038.2024.2356287   Devanga, S. R., Wilgenhof, R., & Mathew, M. (2022). Collaborative referencing using hand gestures in Wernicke's aphasia: Discourse analysis of a case study. Aphasiology, 36(9), 1072-1095. https://doi.org/10.1080/02687038.2021.1937919    

Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, Young Person's Brain Injury Group, and Thursday Night Poets.  I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature my friend and colleague, Dr. Warren Brown. I've been fortunate to work with Dr. Brown for the past two years and I'm excited to share the work he's been doing in service of the LPAA. Warren C. Brown, Ph.D., CCC-SLP is an Assistant Professor in the Department of Communicative Disorders at Jackson State University. His research explores the intersections of traumatic brain injury (TBI), aphasia, and healthcare disparities, with a focus on cultural and linguistic diversity in clinical care. He serves as a facilitator for the Black Aphasia Group at the Aphasia Center of Acadiana and has published on topics related to brain injury, intersectionality, and patient-provider communication. Dr. Brown is an active member of the American Speech-Language and Hearing Association (ASHA), National Black Association for speech Language Pathology (NBASLH), the Academy of Neurogenic Communication Disorders and Sciences (ANCDS), and Alpha Phi Alpha Fraternity Inc. Take Aways: Learn about health disparities faced by Black Americans. Learn about the perceptions of Black Americans towards their healthcare providers. Dr. Brown will continue to facilitate the Black Aphasia Group affiliated with the Aphasia Center of Acadiana. Dr. Brown and his team to are hoping to publish an anthology project featuring entries from Black Americans with aphasia by fall of next year. Dr. Brown plans to organize a symposium on aphasia at Jackson State University with a focus on diversity. Dr. Brown plans to present a poster on the anthology project at the upcoming Aphasia Access Conference.   Interview Transcript:   Jerry Hoepner: Alright. Well, Warren, it's good to see you today. I'm fortunate to see you on a regular basis. So, I think this is the second time we've connected today. For different reasons. But I'm glad to have you here as a part of the Aphasia Access Conversations Podcast. I'm hoping you can share a little bit about yourself. I know that some aphasia access affiliates will know you and know a little bit about your work. But I'd like others to get to know you and your work as well, so can you share a little bit about yourself?   Warren Brown: Yes, sir. Well, thanks for having me. For sure, this is an honor. I'm a recent graduate from the University of Louisiana and Lafayette. With my PhD. I studied under multiple folks. There. I studied under Anthony Salvatore, Dr. Judith Oxley, and Dr. Jamie Azios. My main areas of interest are traumatic brain injury, aphasia, and all neurogenic disorders related to marginalized populations. Prior to my doc program, I was a practicing clinician for 11 years or so I practiced in mainly acute care hospitals long term, acute care, hospitals, home health, and predominantly in Southern Louisiana. So, and I did a little bit of private practice. I did everything but child language disorders. So I prided myself when I started my doc program as being a clinician first, and thinking about clinical issues, first, because I was gracious enough to get a lot of great experience in my timeframe, so I kind of had a better idea about, you know the areas that I was most mostly interested in prior to going into my doc program. So, I'm married. I have 3 kids Wes, Evie, and Wells, which is my newborn and a lovely wife, Tatiana. I'm a new faculty member at Jackson State University in Jackson, Mississippi, and I love my job, and I love my students, and I love my research endeavors that I've done thus far. So, you know I'm fortunate enough to work with you, Dr. Hepner, Dr. Louise Keegan, Dr. Jamie Azios Dr. Judith Oxley. Still Dr. Anthony Salvatory. Still Theresa Gray, a few other folks. I'm just happy that Dr. Brandy Newkirk-Turner as well at Jackson State. I'm happy that I have a great group of mentors to ask questions to and bother from time to time. So, I'm just grateful. So yes, sir.   Jerry Hoepner: Well, yeah, it's been really fun working with you and getting to know you. And certainly, that really strong, diverse group of mentors is something to build upon for sure. That's a great group of people. So privileged to be a part of that a couple of things that we were going to talk about today. I want to get to your work with the black Americans with aphasia group, and I want to get to some of the new work that you've been doing on an anthology. I'll kind of leave it at that, for now you were gracious enough to share a manuscript. That you and Dr. Azios have under review right now. I know it's not quite published, but I'm wondering if you're willing to give us just a little bit of a preview of that work, and I have a few things that I just think were really powerful from reading that manuscript, and I'm interested in your thoughts on it. So, do you want to tell us a little bit about, like the general context of that manuscript?   Warren Brown: Yes, sir, so this was. This was actually a part of my dissertation. My dissertation was a mixed methods. Research project on healthcare encounters of African Americans with aphasia and without aphasia. But I was lucky enough to capture 8 interviews from a qualitative standpoint for that dissertation from African Americans with aphasia from across the United States. Different age ranges different levels of severity and obviously different etiologies from which caused them to acquire aphasia. The paper really came about, because, again, clinically, you know, I always realized that individuals who had aphasia who were black, had a lot of different experiences when it came to healthcare providers and practitioners. And oftentimes, when I would go into a home or see them in a hospital, they would be surprised that I was the individual to see them right. They would think I was a dietary staff member. They would think I was DNA. They would think I was a nurse, everything but a speech pathologist. So, when I had the opportunity to lead or facilitate a group which was the California the conversational group with Dr. Teresa Gray. You know I love to hear the different experiences that those individuals were having, as well coinciding with what I knew what was going on in the field. So that's what spawned this idea about understanding the dynamics of what you know. These encounters were from a deeper perspective. So originally it was going to be just a regular project with Dr. Azios and I, but we felt it'd be better if we made it a larger scale project and added to a portion of my dissertation. So, we did so. We really look to understand those lived experiences of those individuals, how those healthcare encounters went for them before and after they acquired aphasia, and trying to understand, like different strategies and challenges, that you know they may have had to use to overcome some of those issues, and how, you know we could take what they were saying, and make that accessible to practicing clinicians to understand how to work with diverse populations a bit more you know. Yes, sir, so.   Jerry Hoepner: Yeah, I mean, I found a couple of points that well, actually, several within the background. And literature review that really struck me. There's several of these statistics, but a couple that really stood out to me were the percent of deaths among black Americans during the Covid pandemic. And just you know the marked difference between the amount of actual African Americans in those communities and the numbers that died. Which were that was just really striking to me. And then the other one. The other context that you wrote about was the study of 85 black Americans. That were a part of a VA. Study, a veterans affairs study and really just talked about their, you know, their feelings of being stereotyped by the professionals that we're dealing with them, treated and labeled as if they were uneducated, and addicts and angry and poor, and those really set the context for the study. Wondering if you can just kind of weigh in on those and other kinds of striking background pieces of information.   Warren Brown: Yes, sir, so you know, it's known that you know there is racial bias when it comes to African Americans in general, just because of how society is. But you know oftentimes in neurogenic disorders it's unstudied, right? You don't look at race and ethnicity as factors as being contributing factors to some of the issues that the populations that we service are dealing with, you know, looking at Covid alone. You know, we added, that I added that statistic because you know it just kind of highlighted how much racial disparities really are prevalent right and not just individuals with aphasia, but individuals who have a multitude of you call it metabolic issues, right or just issues in general when it comes to healthcare, and how sometimes these issues go unserviced or underserviced, or these individuals are not educated about what they need to do or what they need to accomplish, from a healthcare practitioner which ultimately leads to poorer outcomes across that population. You know. One of the things that we listed in that paper was also about just black women in general, right? Black women are twice as likely to have low birth weights of infants when compared to white women, and they also face lower rates of prenatal care right? Although that doesn't have much to do with aphasia. I think that that speaks to a larger picture than that.   Jerry Hoepner: Yeah.   Warren Brown: You know. Sometimes African Americans are looked down upon the most across our society. And why? That is, you know, it's a multitude of reasons, right? There is no one pinpointed answer for that, and it just kind of paints to the goes to the bigger picture of racial bias, and how patient and provider communication is just poor across the board, and you know, and it could be because of communication styles are different, right? It could be because of the practitioners. You know the old mindset was that the practitioner is always right, so they should. You know the patient should listen to what they're saying, and it's not. It wasn't necessarily a patient center or person-centered approach like it is nowadays. And some practitioners, especially in the South. They still are under that mind, right? Not necessarily in the South, probably across the board in the United States. Right? So, I think that you know those biases, and some of that lack of communication or poor communication it just contributes to the poor perceptions and stereotypes that are out there in African Americans and black people you know, because regardless. When a black person gets sick, you know, they may be scared to go and talk to a practitioner because of where they live. That might be the only practitioner or specialist that they can see, and they are a family member, or a friend might have had a bad experience. Therefore, they're hesitant to go to that person, and they'll just deal with the issue themselves. And that's where you know. I think a lot of the differences are when it comes to African Americans and healthcare providers. And I've seen that as well with individuals who have acquired language disorders. Right? I've had patients particularly. Tell me when I was practicing that. You know, Warren, we want you to come back, but we don't want the other girl to come back, right? Because you're listening to what I'm saying. You actually are educating us about what's going on more so than just what the language issue is right. And I think that points to the picture of just them feeling comfortable with me, because I'm most of the time with the same ethnicity, right? Same race. And I'm genuine, right? I do the same with any patient that I encounter. But obviously, sometimes, when it's African Americans, and I know what the assumption is, and I understand some of those experiences are, you know I try to go a little bit more. I try to. I try to go the extra mile for them. So, this.   Jerry Hoepner: And I think there's it's interesting. And throughout the paper there's parallels to some of the work that you and I and Dr. Keegan have done on healthcare perceptions in traumatic brain injury. That you know you mentioned that idea of providers still following it, falling into that provider centered care rather than person centered care. And I think that's a problem across the board for some providers, because that's evident in our research. But we don't have you know, we're not even representing the black Americans within that group. And I know that the problem is more pervasive when it comes to services for black Americans and other colored people as well. You know the one number that really struck me from the study in Chicago, 70% of.   Warren Brown: 70%.   Jerry Hoepner: From Covid.   Warren Brown: Yeah.   Jerry Hoepner: Were black Americans in Chicago, and only 30% of their populations or population was black Americans. That's just. You can't help but be startled by those kind of disparities, because clearly there's something.   Warren Brown: Up in there.   Jerry Hoepner: Something that.   Warren Brown: And these are these are fairly new studies. Right? I mean, the stat for Louisiana was 70 70.5% of this, and they only represent 33% of the State's population. Right? We're African American people. So that. That's you know. My personally, my dad didn't leave his house for a year and a half during Covid he would not go to church. He didn't leave right, and he was terrified. Terrified. You know. I know he had at least 4 or 5 people that died that he knew. You know. So, I mean, it's daunting right especially if you're not educated, or you're not understanding. I had a great relationship with a practitioner that could educate you on, you know the do's and the don'ts of what you should or shouldn't be doing so. Yes, sir.   Jerry Hoepner: Yeah, absolutely. I kind of broke down the article into 3, like major areas of interest and topics. And I'll just kind of lay out the 1st one being those challenges with healthcare providers. I couldn't help but put down. This one quote was like being put in a damn box, and we had a little conversation about that earlier, but We also talked about this like this lack of knowledge about stroke and that healthcare literacy creating this fear like. And you even mentioned that with your dad, right? This fear that I don't even want to go into that healthcare context. But then this like laundry list of things that we hear in a lot of studies about healthcare perceptions, healthcare providers are dismissive, dismissive, and you feel vulnerable in that context, you don't have control or agency. Those kinds of things that we don't hear in in those other studies about healthcare perceptions are things like. There was a clear. There was a clear prejudice against me. Right? There was this neglect by providers. One lady I had to write this down, wrote. I don't talk to my dog like that, you know, like.   Warren Brown: That's right.   Jerry Hoepner: So.   Warren Brown: That's right.   Jerry Hoepner: And then, you know, just a lack of inclusion in decisions in in the whole entire process. And just feeling that sense of people looking down on you, and that you know that this is kind of the expectation. So I'm really interested to get your thoughts about. You know that that issue of those challenges in terms of working with healthcare providers. How many of those are communication based? And what's kind of bias and kind of sorting some of that out, because we know some happens a little bit to everyone in that context. But certainly, this is different.   Warren Brown: Yeah, I think that you know we all have personal biases that, you know are inherently that we are. You know that we're introduced to that from an environmental standpoint. But you know, one would assume that when you become a healthcare practitioner provider, you know you have to be open-minded because, you understand, you're going to be dealing with so many different types of people from all walks of life. And unfortunately you know, these disparities still are there, and this particular study showed that they're still there, right one of the examples you just gave about the young lady that said, you know I wouldn't let my dog talk to me like that right? I remember in in her Transcript she also stated that you know, in multiple visits that she went to her physician would talk through her or over her, where she just totally felt dismissed, or one interaction she had. She had a friend who was white that brought her to the doctor, and they felt as if the friend was the patient, and she was the patient caregiver right? And I think that really broke her down. She literally stayed out of therapy or avoided therapy for a long time because of that. And obviously that affected her outcomes right. But I think the bigger picture is that it's a little bit of both, Dr. Hoepner. I think it's a lot of bias, and it's also poor communication. You know, I think, and some of that's not on the physicians themselves. Some of them, I'm sure, are compassionate. I think some of that is on the larger system systemic issues that are out there. Right? You know you have. They have insurance deadlines; they have time frames. They have. Probably some of them are overwhelmed with patient care in general. But I still think that you know to be truly compassionate, you know you need to understand what you're getting into as a practitioner, and still with individuals that you know may not understand some of the dynamics of some of the diseases or illnesses that they have. You have to find a way to provide them services that they need. Right? I think the communication is key, because it always goes back to communication. Right individuals who are educated, which a lot of these folks are. Some of these folks in the study. I had PhD. Some of them were medical doctors, right? Some of them have master's degrees. A lot of them still stated that their health literacy was poor when it came to symptomology, of strokes, symptomology of not just strokes, but them acquiring aphasia what that truly meant, and how that might affect their daily lives. Right. One of the individuals she stated that she didn't realize that you know aphasia was a thing until she had it. She didn't realize that she was having multiple strokes right until it happened, and she just felt like she would bounce back and go back to her daily life and be fine and go about her normal business. But you know it's hard to pinpoint exactly how to fix it. But this study is, I guess, one step towards trying to understand the different dynamics from multiple perspectives. And I think what makes it super unique is this qualitative study is really, really, it's very in depth. That's why it's so long right? It's a long paper. But we felt it necessary to put these quotes in, because these individuals, these interviews long and you can't help but be compassionate and understand each individual's perspective on what their experiences were right. You know, because this dynamic, this really changed their lives. And I know aphasia changed the lives of a lot of different people and caregivers right. Anytime you have a failure or even a brain injury. Right? It changes we know that. But I think compounded with the racial and ethnic tension or societal views that these individuals suffered with prior to having those injuries. This acquiring aphasia only makes whatever was going on a bit worse, because the inability to communicate or even comprehend what's going on around you, right being overstimulated, not necessarily being able to do on your own, or do for yourself, especially with a practitioner on something that's unknown to you is again. That's a daunting thing like you really don't know what to do, and if you feel dismissed, or if you feel as if a practitioner is talking down to you, what would make you, as an individual, want to go back? You know the a good example, I can say, is customer service right? If you go to a restaurant and you receive poor customer service from a from a waitress, will you give them a tip probably, maybe, or you might give them a less amount of tip that you would have gave given to a person who gave you better customer service right? This is a good example of what a physician interaction and communication is with a patient right. Sometimes these individuals just won't go back right or might not go back to any practitioner one of the individuals in the interviews. He literally said that you know he had a few poor encounters, so he switches doctors regularly because a lot of them don't understand him and won't try to understand him. So, you know, it's problematic. It's definitely problematic.   Jerry Hoepner: And you hit the customer service thing right on the head, because one of the things that I was struck by, and I've done work kind of parallel to this. And brain injury is that relationship and the importance of starting to build an authentic relationship in terms of mitigating some of the other communication problems, right? Like, if you invest a little bit in like getting to know that human being. You start to humanize them, and you start to, you know, want to have good outcomes for them, and that results in in better care. And it comes right down to that. That patient centered versus provider centered communication. Right? If you open up the door on the front end to investing a little bit in a relationship building, it seems like the goodness follows right like you're saying earlier, like, these physicians aren't bad people right? It's just, you know, they're in a system that says, Go, go. And then they have these biases that they might not even be aware of. And the next thing you know, they're out, you know, on the way out the door, and care hasn't happened in the way that it should. But I'm just struck by the fact that that was like a mitigating factor for people like just a little investment get to know that person. And then everything changes so.   Warren Brown: That's right. I think I think that's what you know. Someone asked me a while back. Why, like our Black aphasia group. Why is it so successful? Right? It's because it's not if I don't. The way that I approached it. I didn't approach it as me, Warren brown as an SLP. Right? I approached it, me, Warren Brown is trying to understand these people's stories and get to know them, and fully. How can I, as an SLP, help you right? And I think that's why our group is so successful, right? And why people keep coming back. Because if they didn't feel like it was a genuine interaction, I can assure you they wouldn't come back. Because I genuinely look forward to the group like the group members do, because I love talking to these folks. These are folks of my family, right? And that's the type of community that you know. Practitioners can make it like that right?   Jerry Hoepner: Okay.   Warren Brown: You know, in certain rehabs. That's what it is. It's a familiar environment. At certain places. I know some of the ones that I used to work at. So, you know, but I definitely understand the dynamics of health care have changed right as time has progressed, and that's due to a multitude of reasons. But care doesn't have to change. Right practitioners can change for the better. If you fully try to understand and invest time and energy and being genuine into the folks that you're seeing right. I truly believe that so.   Jerry Hoepner: Agreed, you know, and when I kind of listed a bunch of priorities, or what black people with aphasia want this? Isn't it an outlandish list by any means like, I've got this big, long list of things that are problems. And then they say they just want to be treated with dignity, compassion, and respect. They want.   Warren Brown: Right.   Jerry Hoepner: Heard, and they want to be treated like human beings. That's not unreasonable. So, it's not like they've got this big, long list of you got to do this. This I just think that's pretty interesting in light of all of the struggles that they're facing like. If you could give us these 4 or 5 things we could. We could work with.   Warren Brown: Yes, sir, and I. And I think even with that the you know, interpretation of respect is different from everyone. But I think ultimately, no matter what race, no matter what ethnicity, what creed you are. Respect is respect, you know, treating people the way you want to be treated right. I mean, that's what it is. And you know, talking to people the way that you want to be spoken to. Right? That's what it is. And I think, like you said, it's so simplistic it should be natural. But obviously it's not for some people right?   Jerry Hoepner: Okay.   Warren Brown: And that's and that's problematic. But hopefully, it's hopefully, we're trying to change that. So you know.   Jerry Hoepner: Yep. yeah. Finding a way to make those priorities on the front end. I think that really makes sense. The other thing I wanted to talk to you about kind of get your take on. This is along with the challenges and along with kind of these desires. What people with aphasia want? I just noticed a lot of strengths that I'm not seeing in some of the other research that's out there from the perspective of survivors of brain injury and so forth. Things that I just saw flowing through like this idea of self-reliance like I learned, I gotta rely on myself, I rely on my faith and my religious beliefs. And then this really struck me, this, this cultural community, where one of the one of the participants said something to the extent of, We always stay in each in each other's business, kind of like, whether we want it or not, whether they want it or not, and that allows them to help each other. I'd just like to get your thoughts on that, because that seems like such a strength of this community.   Warren Brown: Yes, sir, that's a that's a loaded question, but I can definitely break it down. So, I love that question, though I think that you know, from perspective of self-reliance. That's definitely a cultural thing, right? Because, you know, personally, I'm 38. So, I was raised to not be dependent on someone else, because you really can't depend on what someone else can do for you outside of what you can do for yourself. That is something that is instilled at a young age and I went to Southern for my master's right Southern university in Baton Rouge, which is a historically black college or whatnot. And you know, at Southern they taught us the same thing, because, you know, as you know, our field is predominantly white women, right? Less than 5% African Americans, even less percent African American men. And at Southern they always said, You have to work twice as hard in order to be in this field and be successful. And they instilled that in us so much right. Because you really have to understand that you know society has painted this picture that things are against you and these individuals, with aphasia in their own careers, have had this same type of battle and everything that they've gone through. So, they've always had to prevail. And some of these individuals in this group. They went through the Jim Crow South right they went through struggles of individuals, fully talking down to them, having separate everything, having to deal with parents and grandparents that, you know, had to bow down to certain people because of the societal norms at the time, so that self-reliance, you know, always was there, because they always had to work harder in order to achieve what even was fair or normal for other people right? And that paints it to a bigger picture, even goes back to the level of respect. Right? If you work twice if you feel like you working harder than someone else for a job. And you know you're more qualified. Right? That's something that that you feel you're owed. But to some black people you understand that I'm not old. Anything right? That's just how society paints it. It is what it is, and I think that goes back to that point. And I'm sorry. What was the other question? I was trying to.   Jerry Hoepner: So, I think just that that cultural community.   Warren Brown: The cultural. Yes, sir.   Jerry Hoepner: Others, business and.   Warren Brown: So that kind of touched on it, like I think from a cultural standpoint, you know I am my brother's keeper. Right. You may or may not know this, but I'm in a I'm in a predominantly African American fraternity. Right? We're the oldest fraternity, and that's something that we learned right. You. You never go anyplace by yourself. You always have your brother with you. I always have you know I am my brother's keeper, and that goes from, you know, not just African American males, but African American females, and vice versa, because that sense of community, you know. Again, we talked about it earlier with the Speech acts is unspoken, things that we understand inherently, that as an African American or a black person, you're going to endure in life, and you have to just suck it up and swallow your pride and deal with it. But we all are going through that struggle right, and I think some demographic groups can relate to that. But obviously some groups can't as much right. It's harder to you can empathize. But you may not fully understand, just because the dynamics are different, right? And I'm not saying that all black people have that experience. I'm not saying that. But I'm saying that a lot of black people feel like that. And that was inherent in the interviews as well. Because this group, you know, they, we talk about community. We talk about personal experiences and regardless. If some of them had a PhD., a MD a Ms., a BA right behind their names. All of them had the same experiences. Right? I have to highlight one of the folks in the group. He went to Harvard. He was the second African American person to graduate with a PhD. From the State of Mississippi. Right, you could. I could only imagine. And he did this in the seventies. I could only imagine the struggle that he had to go through right to attain a degree like that from a school like that coming from where he came from. So you know something that you know other people's family members may have done, you know, is probably much more meaningful to him because of the struggle he had to go through, and I think that is where the community comes in because African Americans acknowledge that right? I was always told. Like, you know, school is important. Education is important, you know, education to get you a lot further in life than sports and all these other things, because, you know, it was always instilled that in education, you know, knowledge is power and you know these older folks. I call them older folks. No offense, right? No ageism here. But you know the 70 plus right. Those individuals who have doctorates and really are fully educated. Their battle and struggle was much harder than mine coming through school right? And I. And that's a level of respect, a level of community that we all know how to respect. And I think you know, when it comes to community, that's something that we all can recognize as a culture. And with this particular group, that's something that's respected across the board because, regardless of the level of severity of aphasia, they have every individual in that group respects one another. They check on one another. They listen to stories about one another. They know about each other's family right? Milestones. It's phenomenal, right. When I got my doctorate. They were the 1st people to congratulate me right. When someone had another struggle in the group. We were the 1st to say a prayer for them and why? That is cultural. It's a traditional thing. I mean, it probably ties back to slavery before the great migration, right? And folks moved up and all around from the south to different parts of the North. Right? That's something that is always probably going to be there. And that's a cultural thing that you know, is really unspoken a lot of times. So.   Jerry Hoepner: Yeah. You know, you talked about the people in the study, the people with PhDs and master's degrees and physicians. One of the stories I kind of connected with was Ann Story. She was a physician prior to her stroke, and had acknowledged that she had colleagues that she would refer black Americans to, and colleagues she wouldn't and then she had the stroke, and she had this very personal, insider experience. I don't know if you want to just say a couple of things about that.   Warren Brown: Yes, sir, she actually, I'm glad you said that she actually definitely said that she referred people to certain practitioners because she knew certain physicians with had more empathy than others. Right now, her experience was a little bit different, right? She didn't really have any negative experiences with practitioners, but also all of them knew she was a medical doctor, right? And I think that you know that level of information is different, because had they not known who knows what her story would have been right as opposed to the individual with the PhD. They didn't know he had a PhD. Because at the time of his stroke he couldn't talk, so it wasn't until his wife came and alerted them as to who he was and where he worked, that some of that stuff shifted, and obviously it shifted when he went to different facilities as well. But Ann's experience was very, very different than some of the other individuals, but I think that even with that she was much more conscious about her experiences as well, because she kind of had a better anticipation about what she was supposed to receive and how services were supposed to go for her right. And that goes back to the bigger picture of healthcare literacy right? Obviously, her literacy and understanding of how healthcare works was a bit better because she was a medical doctor, and I think even just. Her journey with aphasia was a bit better in a lot of different ways as well. Yes, sir.   Jerry Hoepner: Yeah, that's really important to have that that perspective and that kind of juxtaposition. Well, I do want to make sure we have some time to talk a little bit about your role in running the Black aphasia group, and how that's changed your clinical perspective, your research perspectives kind of what you've learned in that. In that context.   Warren Brown: Absolutely so. Originally, I was gung ho! About brain injury. Only, right? I didn't really necessarily want to go into aphasia as much as I am, because my premise for going to get the PhD. Or really one of the main reasons why was I wanted to study sports, related concussions mostly. But once I got into the program and I learned about some of the different, the different profs, some of their interests, you know. I couldn't help myself, but dip into it some, and I got an opportunity at the last Aphasia conference to meet Teresa Gray and she allowed me to facilitate her group out in California, and then we started our own group through the aphasia center of Acadiana with Dr. Azios and Miss Rose Shelf. So, you know, I still run that group. It's still affiliated with the aphasia center of Acadiana. Although I'm in Jackson State. I asked Dr. Azios if we could continue to do that because I think that that connection to an aphasia center is integral. Because I think that you know with the group, that's what we're known for. And that's what we're going to stay as long as they'll have me. So. You know, with that group I've learned so much more than what I knew before, as far as compassion, as far as empathy. As far as, although you might be the expert or the practitioner, you still need to understand the dynamics of the individuals that you're seeing just hearing some of their stories, and even personally, as a practitioner, some of the things that I used to do right, which were probably wrong, because that's how I was trained originally in the beginning, you know, and I shifted throughout my career as well, because I understood a lot more, but I think even more so now, I really fully understand. And that's kind of what I teach a lot of the students that I have right how to understand the dynamics of people that you're working with and the students at Jackson State. They have an opportunity now where they actually come on with the group, and I allow them to have somewhat of a conversational type of discourse with the members, so they can understand those dynamics, for whenever they get out in the field to understand how to work with diverse people with aphasia. So, one of the things that you know, we were able to start with the group members. And this was all the group members. They wanted to create an anthology, right? Because they stated that they wanted to document right their journeys and journeys for other people who are African Americans or of color to understand. You know what you may or may not go through right that you are not alone, that you aren't in a damn box by yourself. Right? They wanted to understand that also for caregivers what to do, because all of these individuals literally stated, they all were oblivious to aphasia prior to this, prior to acquiring it. So this anthology is serving, as you know, just a guide or tool to use for individuals and for other individuals with aphasia who may or may not be of color to relate with right and for individuals to understand like, Hey, you know, this is what I went through. You know I am black with aphasia. This is also to get other people who are black with aphasia in their caregivers to understand that. Hey? We have a group for us out there that you may or may not want to be a part of and last week we actually added a new member. So that was wonderful. But so far, we have multiple different entries. The group participants have entered essays. They've entered poetry. Some have done checklists, some have done prayers some have even one. We have one from a caregiver. Her husband has aphasia. She comes to the group as well. We love her. She's actually a compound pharmacist. She wrote about her perspective as a caregiver in the anthology as well. So.   Jerry Hoepner: Cool.   Warren Brown: Me. Being in Jackson state. I got lucky enough to talk with Dr. Brandon Newkirk Turner, and Dr. Morris is that the University of Saint Augustine. They connected me with Dr. Mcdaniels, who's over the Humanity Society in Mississippi, and she's gonna help us to get it out there. So.   Jerry Hoepner: Awesome.   Warren Brown: And recently we started a collaboration with one of the art, the Black art History professors at Jackson State, Dr. Brittany, Meinberg. We're actually going to make it aphasia friendly. So, whereas we're gonna have mirrored pictures of the entries and the pictures of those entries from an abstract standpoint for individuals who have aphasia so they can read it and be aphasia friendly as well. So yes, sir, that's the idea, and hopefully we'll have something by the fall of next year. So.   Jerry Hoepner: Because.   Warren Brown: At JSU, we're going to be doing a symposium on aphasia. And obviously, since it's an HBCU we're gonna have some focus on diversity with that as well. So yes, sir.   Jerry Hoepner: Well, I'm excited to see that anthology come to fruition and look forward to kind of keeping an eye out for that and everyone out there who's listening. Keep an eye out for that as well. Just a handful. 2 or 3 more questions I want to ask. Just find out a little bit more about your experience. I know that you've had opportunities to work alongside of some great researchers and clinicians. I want to get your perspectives on that. And yeah, share a little bit about that, and how that's prepared you to be like a brand new professor this year. So.   Warren Brown: Yes, yes, sir, absolutely you know. I can honestly say it's truly been a blessing since I started at UL, and I'm done now to be able to encounter all the folks that I have. You know, from Dr. Salvatore to Dr. Michael Canito to you. Right, Dr. Hoepner to Dr. Louise Keegan, Dr. Azios, Oxley Ryan, Nelson. You know the list goes on right. Everybody that I've worked with and spoken to all have different perspectives of our research, you know, and I and I take pieces from everyone that I've worked with to understand how I want to approach things right, because my love is always going to be diversity right in whatever area that I'm in. And you know, I think that's what makes me a little bit unique, right? Because my perspective is always looking at the population that I mainly care the most about right. And you know understanding the different dynamics about how you all have what you all have done. And from reading, all of you guys work, I call it borderline stalking. You guys work right? I remember the 1st time I met you, Dr. Hoepner, I was terrified to talk to you, man I really was, and then, when you introduce yourself to me, I was quiet, and I was like, he's normal. He's not like, I thought he was. So, I was like, Okay, this, this is cool. So, and Dr. Jamie said, just go talk to him. He's cool. Go talk to him. I was like Okay, but I use it as an example, because, you know we're all human, and I think that you know sometimes, you know, as a new researcher, as a novice researcher, as a student, you know, you get overwhelmed with the people that you're reading about, the books that you're using or books that you're reading. These are the folks that are writing it. And hopefully, one day you can get to that level to impact students like myself, like I was, or students that are out there, up and coming students. So, you know, I think, that all the work that everyone is that I've learned under and still learning under, you know, it's important, because this is all. This is all, how we all are contributing to the field and how we're making the field better. Right? I think that's the ultimate goal ultimately is to serve the population of individuals that we're treating. It's never about me, right? It's never about you. It's never about any of this is about the work that we're doing to improve outcomes, to improve the populations that we serve. And you know, clinically, I've worked with some phenomenal clinicians. When I was a clinic, when I was a clinician when I was a full-time clinician and you know I've had great clinicians that I've worked under and with, and horrible at the same time. I think we all have, and you know, when I was in administration I would fire and hire people left and right. I would let people know if they were horrible, and I would just go on and keep moving. But I think you know now that I've shifted to research and understanding how clinicians think to a certain degree. You know, I can understand why some clinicians practice the way they do or did, because they were ignorant to what's out there, you know. Earlier on in my career I was oblivious to aphasia. I heard nothing about it. I work in acute care hospitals, major acute hospitals because they weren't that popular in the South, right? It wasn't really until I got to Southern, and I taught undergrad for a while. And you know in some of the text that I was reading. I read about it, and I was like, Oh, I never knew that was a thing right, because they weren't offered. We had Parkinson's groups. But we never had aphasia group, right? And I think that you know, and TBI groups that we have that as well. But I think these groups are much more impactful because they do serve as a sense of community for a multitude of people. And these groups are places where individuals can go when they plateau out of therapy. And I want to say something on that, too. That's actually one of the topics we wrote about in the anthology. What does it feel like to be plateaued or told you plateaued in therapy? Right? And it's just amazing how you know as a clinician, you say that to someone right? Or you meet, you met Max level of potential. You say that to someone, but you don't fully understand the mental or the impact that you have on an individual when you say that right? And that was something we talked about. And now they're writing about it. And I'm like man. I never thought about that as a clinician. So I say that to say even I'm still learning right. That's something we should know. But you don't think about it from a clinical standpoint, because that's a standardized thing. But to an individual who's suffering from or had to endure what you're saying to them, it's a totally different perspective. Right? So, you know, I'm learning that. And I'm learning how to be more compassionate, too. So yes, sir, I'm learning a lot. I love it. I love it so.   Jerry Hoepner: We are well on your way, and you will make that impact on a lot of students. I'm sure you already have. Well, just to kind of bring things to a close. I want to end with a lighter note hopefully, a lighter note. What brings you peace in the midst of this sometimes crazy world that we're living in.   Warren Brown: Oh, man, I love! I love my kids and my wife. I love my kids and my wife. They bring me peace. I'm a I'm a classic car collector. I love my classics, too. I have them. Can I share about that?   Jerry Hoepner: Absolutely.   Warren Brown: So, I have a 1969, a 396 Chevelle that I bought years ago. And we're restoring that we're almost done with that. I just have to get it painted. And recently I bought a 1985 K. 5 Chevy Blazer that we started to restore as well. It's a smaller engine. It's a 305, but that's something that brings me peace as well. You know my dad was a jack of all trades. So, I learned at a young age how to construct houses, how to do plumbing electrical fix cars. That's why I went to college, so I didn't want to do that full time. So, but one thing about it is that you know, I learned how to do all those things, so I can teach that to my kids. And hopefully, that's our family time. You know that we do these things together. That's what truly brings me peace, my family, and a lot of my friends. So, for sure. Yes, sir.   Jerry Hoepner: Well, that's fantastic. And obviously you and I could talk all day. We need to wrap things up. Hopefully. We'll get to see you at the Aphasia Access Leadership Summit and connect there.   Warren Brown: I'll be there. Yes, sir.   01:05:02.260 --> 01:05:11.929 Jerry Hoepner: Connect with a whole bunch of new people. That you haven't met yet, too. So, thank you so much. Warren and I look forward to talking to you again soon.   Warren Brown: Thanks, Dr. Hoepner. Thanks for having me. I appreciate it.   Jerry Hoepner: You're so welcome. On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.

  Dr. Janet Patterson: Welcome to this Aphasia Access Aphasia Conversations Podcast, a series of conversations about the LPAA model and aphasia programs that follow this model. My name is Janet Patterson, and I am a research speech-language pathologist at the VA Northern California Healthcare System in Martinez, California. Today, I am delighted to be speaking with Dr. Elizabeth Madden, an Assistant Professor at Florida State University in the School of Communication Sciences and Disorders and an affiliate of the Institute for Successful Longevity. Liz also leads the FSU Aphasia Research Laboratory. Liz's research, teaching and clinical interests focus on rehabilitation of aphasia, and specifically on understanding the relationship between spoken and written language abilities in individuals with aphasia and developing behavioral treatments to address reading and writing disorders post stroke. Her work also addresses the impact of aphasia on the friendships and social well-being of people with aphasia and their care partners. These Show Notes accompany the conversation with Liz but are not a verbatim transcript.   In today's episode you will hear about: the power of friendship and what people with aphasia and care partners think about how aphasia can affect the ability to create and sustain friendships, the definition of literacy and its behavioral components, and behavioral treatments for reading comprehension deficit in aphasia.   In 2024, Liz was named a Distinguished Scholar USA by the Tavistock Trust for Aphasia UK. The Tavistock Trust aims to help improve the quality of life for those with aphasia, their families and care partners by addressing research capacity related to quality-of-life issues in aphasia. Congratulations on receiving this honor, Liz. Aphasia Access collaborates with the Tavistock Trust for Aphasia in selecting the awardees and is pleased to have the opportunity to discuss their work and the career influence of the Tavistock Award.   Welcome Liz, to Aphasia Access Conversations.   Dr. Liz Madden: Thank you, Janet. I'm really happy to be here today. I also say thank you to Aphasia Access and to the Tavistock Trust for Aphasia. I'm very grateful for this award and excited to have this conversation.   Janet: I'm excited to be talking to you, my friend and research partner in several endeavors that we've been working on over the last few years.   Liz, as we've said, you were named a Tavistock Trust Distinguished Scholar USA for this year, and you join a talented and dedicated group of individuals. How has receiving the Tavistock Award influenced your clinical and research efforts in aphasia,   Liz: I first wanted to extend that thank you to the Tavistock Trust for Aphasia, and specifically Henrietta, the Duchess of Bedford and the honorable Nicole Campbell, and just a very gracious, sincere thank you for all the time and effort and support they give to aphasia researchers. I would say, I'm just delighted and very humbled to be recognized this year. I would say further that this award motivates my work that is focused on trying to really make an impact on the lives and quality of life and successful living for people who have aphasia and continuing my work. My beginning work was really more impairment focused, which some of that we will talk about, and I really value that. But having this award, and the more I stay in the field, it is extending that and making sure that everything I'm doing always is directly related to helping the lives of people with aphasia.   Janet: That leads right into the question I'd like to begin with Liz, which is about your recent work investigating the role of friendship for persons with aphasia. I believe in the power of friendship and community during joyful times and also during the sad times in one's life. In Aphasia. Access podcast episode number 119, Finding the person in front of aphasia, I talked with your friend and colleague, Dr Lauren Bislick, with whom I believe you collaborate to investigate friendship and aphasia. How did you become interested in this aspect of aphasia, and what can you tell us about your work in this area and your collaboration with Lauren?   Liz: Lauren and I did our Ph.D.'s together. We both were mentored by Diane Kendall at the University of Washington, so Lauren and I are Ph.D. sisters. Also, we were both at Project Bridge, led by Dr. Jackie Hinkley in 2018. That's really where my interest in friendship began. That conference brought together researchers, speech-language pathologists, people with aphasia, and their friends and family. I was the researcher at a table, and we ended up being Team Friendship. Lauren was also at this meeting, but she was at Team Yoga; Lauren does a lot of work with friendship, but also with yoga. My other colleague who does a lot of friendship work with me is Dr. Michelle Therrien here at FSU. She primarily works with children who use AAC, but her main research is friendship. She and I had already had some conversations about the importance of friendship, particularly for people who have communication disorders. The idea was we leave the conference and to take action and carry out some of the goals that were generated from that discussion. So that's when I reached back out to Lauren, because she was at that conference. Then I also reached out to my friend, Michelle Therrien, and other individuals who became part of our Team Friendship, Dr. Sarah Wallace, who's also one of our good friends and collaborators, and Rachel Gough Albritton who is one of Jackie Hinkley's former doc students and here at FSU as well. and the office of research. That is the background of some conversations before Project Bridge, but really for me, coming back and actually starting studies addressing different aspects of friendship, which I know we'll talk more about, was really brought about by the Project Bridge conference.   Janet: That is quite a story, and I can see you sitting around the table and developing Team Friendship - good for you.   We all know, Liz, that one of the unfortunate consequences of aphasia can be the loss of or the diminishing of friendships, or the disruption of the communication skills important to developing and sustaining friendship and community. What have you learned from people with aphasia about their successes and challenges in sustaining and creating new friendships.   Liz: Yes, good question. Well, at that conference that I mentioned, there were five or six people with aphasia, and initially our table was labeled something like, What happens in the long run? and we started having conversations. It was very clear after our initial conversation that the group centered on relationships and friendship, so we shifted to being friendship only. I will say, just at that table, it became very clear to me, that's what rose to the top when the group was thinking about the bigger picture of living life.   In a research project we've done there was a small sample of 15 people with aphasia, and we talked to them over time. I think the timing of a conversation is really something important to keep in mind when we're talking to people with aphasia about any topic, of course, but particularly friendship. From other studies we've noticed that responses are really different. If we're talking during the early days, maybe the acute days, versus the chronic days, we'd get really different responses. Just a quick summary, again, this was 15 people and a unique set. Most people in our study were a part of aphasia groups, and, of course, really motivated to do research. But I will say, when we looked at their responses, when asked to think back to the early days, all different aspects of friendship, how supported they felt, or how they were able to communicate, and we compared it to their responses in the now. Overall, the pattern was less satisfaction, feeling less supported or less able to engage in those earlier days, but more of a recovery pattern over time, but again, not for everybody. There were still a few people in our group that were reporting not having many friends. Our paper had a different light, a positive light about friendships. Some of the other papers out there have a more negative tone. It's a very important area we need to address. I was happy to see this group reporting, now that they had been living with aphasia for several years, their pattern of more negative responses early, and a recovering pattern now. They reported making friends with other people who have aphasia, and finding at this point, who are those good friends.   There's other great work being done by other colleagues, Brent Archer, Jamie Azios and Katie Strong, who are studying the same topic. They had a great paper that describes who stuck around, they were examining the next steps of what it takes to support the positive recovery that we know does happen for some people.   Janet: I like the positive perspective you are taking. Given that one has had a stroke, and given that the this is the situation in life, what is the positive? What can you do? Who are your friends? Look at positive ideas rather than publishing research on all the negative aspects. Kudos to you for doing that.   Liz: Thanks, all of it's important, right? We have to know that. I think we had a special group. I think we had a particularly positive outcome, and it was good to know that friendships don't disappear for everyone. But I think there's something that those people had done and that their friends had done, that we're still trying to learn more about.   Janet: Thank you for that work. Liz. It makes me think about the aphasia journey in that it involves not just the person with aphasia, but also their care partners and all the people around them. In your investigations of friendship, what do the care partners of persons with aphasia tell you about their successes and challenges in sustaining and developing friendships? These friendships could be individual friendships or partner friendships or group friendships through social, religious or professional activities or even community groups.   Liz: Thank you for this question. I think it's sometimes a forgotten group that we overlook, the care partners, and the critical role they play in the recovery of people with aphasia. I always try to have us remember we want the care partners to do well on their own as people, and so we've done a couple projects. We've just finished data collection on a much larger study of 80 aphasia care partners, and I'm just getting into those data. We did a Qualtrics survey and also did experience sampling, where we used a phone app, and four times a day for two weeks, participants got these little pings, and they had to tell us, Where are you? What are you doing? Who are you with? How are you feeling? When was the last time you interacted with a friend? Was it a text? I don't have the amazing outcomes for you yet. This project was a much bigger follow-up to a project a few years ago with 35 care partners. We, of course, wanted to interview them but then COVID was happening, so we settled for a really nice Qualtrics survey.   I will say that these individuals were surprised when we were reaching out to them. They kept trying to schedule their loved one with aphasia, and we said, “No, we want to talk to you about your friendships.” And they were surprised, asking, “You want to talk about me.' I will say they were very excited that we wanted to know about them. Back to the timeline I shared earlier in that very small study, the profile was opposite. We asked them about their friendships before they were caregivers, the early stages of caregiving, and then now, and their comments kind of make sense. Across the group they reported in the early stages, they felt like they had really great friends, support and satisfaction. People were rallying around them, coming to the hospital to support them. Many of them had been caregiving for a very long time when we did a comparison, and their reported friendship satisfaction and support was actually lower now. The questions were not the same and the groups were different, but as I told you a few minutes ago, the people with aphasia were more negative in the acute stage, and our small group were more positive now with how they're feeling about their friendships, and the care partners were the opposite. They were feeling more supported in the beginning, and now as time has gone on, some of them report the friends aren't there as much. Some of them felt like they were a burden, or they didn't know how to engage, being very selfless. They have dropped their own social interests to take care of their loved one. We did see in that project, that the longer, the more months a person had been caregiving, was correlated with poor self-perceived friendships and also how they perceived their loved one's health. That was just their perception. If they perceived their loved one to have more health concerns, not just a feature but overall health, they also tended to rate themselves as not as satisfied with their friendship. Bringing in that piece of information and the caregiving burden into our new projects, we did actually get scales on resilience and caregiving burden depression. In this new project we replicated some of our same questions, and we're now trying to look more at overall well-being, seeing how resilience and purpose in life and caregiving burden might play a role.   Janet: That reminds me of the commercials, when you are taking off in an airplane or when you are thinking about being a care partner, you do have to take care of yourself as the care partner before you can give the best care to the person with aphasia. Anything that we can do to focus on the person the with aphasia, and also focus on the care partner, I think, is good in terms of developing and sustaining friendships,   Liz: Yes. Care partners definitely have a lot more to say, and we haven't actually been able to do face to face interviews yet, but we did have a lot of really rich, open ended responses and surveys that we're still looking through. A piece I'm really interested in, is we have that one-time perception when they did our one-time survey, now we have their responses, we can track how people respond over a two-week period, were they always at home with their loved ones and not responding to friends? I think there's just a lot and again, trying to understand from this group what are the positives. Who are the people that have these positive responses? Then, of course, the next big steps are trying to provide more research resources and interventions for both care partners and people with aphasia. Our group has not yet reached out to friends, so that's a big part to come. I think other researchers have examined friends and a key part intervening with these friends too.   Janet: People with aphasia and care partners have different friendship styles and needs, and when aphasia disrupts communication, it can also affect the way a person approaches friendship. As speech-language pathologists, I believe that we can play a role in guiding a person with aphasia and a care partner to develop communication skills that can support friendship efforts. Liz, what are some ideas or actions that you might think of for speech-language pathologists in a busy clinical practice? What kind of actions can they take to support friendship activities, for a person with aphasia, recognizing, of course, that we are all different in our friendship activities. Also recognizing that you're at the very beginning of some of this work, I'm hoping that you have some ideas you might be able to share with us.   Liz: Yes, actually our very first friendship project addressed this topic. It was led by Michelle Therrien, and we surveyed about 40 speech-language pathologists trying to find out their view of the role that they think they should play. They find friendship to be very important. They find it to be in their scope of practice. But not surprising, were not aware of resources. They felt overwhelmed with how much speech-language pathologists have to cover, right? But it was really good to know that the group we reached out to found it to be a very important part of their practice that they want to address. I think you hit on something really important, that we teach and adopt having a person-centered care model, and we know that it's part of what we ask about. The simplest thing is asking. We don't need tools. We just need to make sure it's part of what we ask, making sure we're talking about relationships, talking about friendships.   There are some really great tools that do exist. There's the Stroke Social Network Scale by Sarah Northcott and Katerina Hillary from the UK. Katie Strong, Brent Archer, Jamie Azios and Natalie Douglas are a wonderful group who have been studying friendship. They've used the Social Convoy Model in some of their papers. It has a great visual that they have used, and therapists can also use. Basically, it is mapping out the social network of who's most important, which could be used one time, or as a pre-post measure. There are different ways, formal or informal, of trying to monitor someone's social network or how they feel supported. I don't think there's a target number of friendships and I don't think more means better, but it could be just making sure we're checking in and that we know that's an important part of therapy. We want them to be able to communicate and interact with friends. Speech-language pathologists are creative in to how to make that happen.   Janet: I agree with that view Liz, and I hope that speech-language pathologists will feel comfortable being creative and asking people about their friendships or what they might need to help maintain or sustain their friendships.   I would like to turn now to the topics of reading and literacy, which I know you have been investigating. While these terms are related, they are not synonymous. Would you please explain the difference between them and how you are investigating both in your research?   Liz: Yes. Thanks. That is a good question. To be honest, the first answer is not very scientific. When I was writing papers it was getting cumbersome to always write reading and spelling/ writing. The term came to be when I wanted to make sure that I was making it clear that I wasn't just focused on reading, but also concerned with the spelling and writing components. With my colleagues, Jessica Obermeier and Aaron Bush, we started using the term literacy for some of our work. People will have different ideas of what literacy might entail. I have been describing treatment as “literacy focused”, working on reading and spelling and writing.   My initial work was very much focused on reading, and over the past several years I became more interested in trying to also add on the spelling component. If we're working on spelling and writing it gives us a chance to inherently work on the reading. If we're only focused on reading, it doesn't bring in the writing. There's a time for them to be separate, I fully agree. There are also times where they can be targeted at the same time.   Janet: That makes perfect sense. When I think about how we discussed in the past, reading for pleasure, or reading to gain knowledge, or reading for information, or reading for safety, so many different aspects of reading, literacy also factors into how you use reading in those situations.   Liz: Yes, and so in a lot of day-to-day communication, you need both, right? It's for text messaging, right? We need to read it and respond in a written way, also emails. There are lots of instances where for the for the interaction to go well, we need to be able to read and respond in writing, such as filling out forms, email, texting, social media. For a lot of interactions we need both for there to be a successful written language exchange.   Janet: Liz, as part of our work with the Academy of Neurologic Communication Disorders and Sciences, Aphasia Writing Group, you and I were part of the team who critically reviewed treatment approaches for reading comprehension deficits in persons with aphasia. You've also investigated, as you mentioned earlier, specific aspects of reading deficits in persons with aphasia. What are some of the insights that you have gained from this work? And by the way, it was such a pleasure doing that critical review of treatment for reading deficits, and there was a lot of interesting information that came to light in that paper.   Liz: Yes, thank you. I was going to comment that I remember we thought we were going to have all these papers to go through and really and that review, we were very much focused on papers where the main outcome was reading comprehension. When we stuck to what our aim was, there really weren't that many papers that that met the aim of that project. So that really brought to light that it really is an area of our field that doesn't have enough attention.   Some of my recent projects, as I mentioned with Aaron Bush and Jessica Obermeier, we've talked to people with aphasia and gotten their perspective of before and early days. I really like doing this research over time. Things change, but we learned just how important reading and writing are to people with aphasia, and that they really want to work on it. I think we've seen when we looked in the literature, there wasn't much there. When we've talked to people with aphasia and speech-language pathologists, they want to work on reading, and they're not sure how. That further motivates me that this is an area to work on.   In some of my beginning work, I was Diane Kendall's research speech language pathologist for a few years before I did my Ph.D., and I exclusively delivered her phono motor treatment. In that research trial, the main outcome was word retrieval, but the therapy that she designed inherently worked a lot on reading and writing. We retrained every phoneme - how to say it, what your mouth is doing, and also the graphemes that go with the phonemes. As her research speech pathologist, that's really when I got very interested in reading. I'd be in these sessions, and we'd finally bring out the graphemes that go with the phonemes. I recall telling people that this is going to get better – and it did not. That connection between the phonemes and the graphemes, for a lot of people, wasn't there. In that clinical experience as her research speech pathologist is when I realized that the treatment improved reading for some people, but not for everyone. So that's my background of really getting focused on reading.   In the last few years, I've been working on adapting that original version of treatment that was for word retrieval. I've added some components to make it more focused on reading. I've been working with Olga Burkina, who's at the Kessler Stroke Foundation, and has an NIH grant where she is pairing exercise with this reading focused phono motor treatment. It's fun to be a part of that group exploring the idea of doing aerobic exercise to improve the brain blood flow, and to see if that's going to help improve reading treatment. Again, the idea being going forward is what the treatment might change.   There are some other projects also. I'm working with Will Graves at Rutgers. He is using computational modeling to have us stop guessing which treatment. We're trying to get a really good baseline assessment, trying to find out about semantic impairment, phonological impairment, and then we're using this reading focused phono motor treatment. We also have a reading focus semantic feature analysis. I really enjoy getting to work with different researchers who have these wonderful, big questions, and that I'm getting to support it as the speech-language pathologist on these projects focused on reading and writing and phono motor treatment. So those are some exciting projects I'm involved in right now.   Janet: That's exciting, because you started out by saying there were only a few papers that we found that really address reading treatment, and you're right.  It's daunting, then how do you select the reading treatment? How do you help this person with aphasia who wants to improve their reading comprehension? I think it's exciting that you've got all these different avenues and are working with a variety of people to investigate treatment.   Liz: Yeah. And the one thing I'll add to that is part of that, that review we did, for some people those treatments are helping reading comprehension. But for some people, I've been trying to work on the next step. I have a very small dataset where I've added a semantic comprehension stage to my adapted photo motor treatment. I'm in the very early stages of this and I'm sure it's fine to say, but I've been having these really exciting conversations with Kelly Knollman-Porter and Sarah Wallace. They're also Tavistock Trust recipients, and they study reading from a different perspective, using text to speech, compensatory and very focused book reading. They're very comprehension focused, so we're at the very early, fun stages of where we are in our thinking. I think there might be a middle step we are missing, but we are talking about taking these impairment focused treatments, which I think have a role, and have a participation, functional part of it. That's another emerging, new collaboration, where we are coming to reading from different perspectives, and we're trying to see where we can get with that goal, back to this comprehension question, improving functional reading, maybe from impairment and compensatory approaches.   Janet: I think that's the right approach to take, and I think it's exciting, because we have to remember that everybody reads differently. Some people like reading, some people don't enjoy reading. They read what they have to, but they don't particularly enjoy it. So, if we all come to it from different perspectives, we all have different strengths that we bring, and different deficits as well, and different needs or designs, just as is so many things with aphasia. Start with the person with aphasia, asking What do you want to read? What problems are you having? Then use that as a guide to selecting an impairment-based treatment or text to speech treatment, or whatever. I think that's exactly the right approach.   Liz: The one thing the treatment we were talking about, phono motor treatment, in general, is a phonology treatment. The good thing is that my focus is asking, is it improving reading? I'm also extending it to writing. We do know at its core, it's a language treatment, so it is nice that it can be tweaked to serve the person's main interests. I think that's important, that we are trying to work on what people want to work on, but we want to make sure we're improving, if we can, not just one language modality, and we know that these abilities are supported by similar brain structures and underling cognitive processes. That's something else we've been trying to work on, being person centered and at the same time trying to maximize generalization - lots of pieces. I am finding now what's most motivating and exciting is trying to make sure that we're doing things that people with aphasia find important, and how also to keep the whole science moving forward in this way that's going to have functional, important outcomes. That people with aphasia are going to be able to do what they want to do to the best that they can.   Janet: Absolutely! But then there's the scientific challenge of how do you collect the data? How to best observe specific outcome data on performance measures, but also collect the person-centered data. How do you collect data that really can speak to whether you're having a success and whether this might be generalizable or transferable to another person?   Liz: I think it's important that we need both. I always say, and some of my collaborators may not like it, but if in the person reported outcome, a person with aphasia is telling us that they feel better and that they are communicating better in life, and those measures should not be optional, those measures to me, a critically important part of seeing this treatment successful. There are different ways to do that and different ways to capture their perspective. For example, if trained reading words moved this much and if the patient reported outcome change is greater, then I find that to be a success. If the reverse happens, I find treatment not successful. If my probes showed gain but the person with aphasia does not see it or feel it, then I don't find treatment to be a success. So, I think it's really important that persons with aphasia tell us different things, and we need to have many assessments in both of those categories. I think, when possible.   Janet: You're absolutely right. When you think about many of the treatments that we're doing, they are not necessarily easy, and they take time, and you have to stay the course. I think you know, I've been interested for a number of years in motivation and engagement, and what keeps people motivated and doing what they're doing. If you've got a treatment that you can see over time, small changes in your specific reading outcomes, but not so much of a change in the person centered outcomes, or person reported outcomes, how do you know the person is still really engaged and motivated and willing to slog through your treatment in order to get to the place that you hope they will? I think you're correct when you're assessing the importance of the person reported outcome.   Liz: Yeah, that's good. And then that's a whole other like measure in itself, right? The key of motivation we've talked about in some of the trials. The one person who didn't do very well, and just in our conversation, sometimes it for different reasons. That wasn't motivating for that person. There's that's a whole very important piece that a lot of us have a lot of room to improve in how we capture that and support that.   Janet: Which is a challenge when we're trying to devise treatments for, say, reading or anything that can be applicable to a wide range of persons with aphasia. Kudos to you for meeting that challenge as best you can.   Liz: We're working on it. But I do really think that it's changing. Sometimes I feel like there are impairment-based people and life participation people, and I don't think it needs to be that way. It's fine if we only study one area. We can't all study everything, but I think as a whole they complement each other very well. And so I'm just excited to see that it seems like things are moving in a really exciting way, where people who study aphasia in various different ways now seem to have the main outcome, asking is this going to help people with aphasia feel better, communicate better, and look forward to something different in life? I think we're all seeing that that's what we're supposed to be doing, and how we do it is going to look really different, and that's great. I think we're moving in the right direction.   Janet: Very well said. I think, and you obviously do as well, that literacy and reading skills are crucially important to individuals with aphasia in so many ways, such as life skills reading or pleasure reading. Acknowledging that we all have different skill levels and preferences, what are some ideas that you might have identified that speech-language pathologists can use to support the literacy and reading desires and activities for a person with aphasia?   Liz: Great question. I think my answer is very similar to the question about what can SLPs do to help support friendship? I think being person centered. You said earlier, right, we all have different interests. Somebody might say it's not one of my goals and I really don't want to spend a lot of time on this. But just having those conversations and person-centered measures and using supported conversation we can easily gather important information. There are some really good patient-reported outcome measures that ask about reading, so maybe use some of those existing tools. The Comprehensive Aphasia Disability Questionnaire has a nice scale that talks about different aspects of reading as well as other aspects of language. But at the minimum, I think finding a way, even just to draw your own scale and then trying to find out in their life, what are different activities where they want to or need to engage, right? Texting, email, restaurant. I mean, we think about it, we're reading all the time throughout life. So, I think finding the reading need is a general interest and then getting really specific is one way to do it. Another thing could be, as I mentioned before, our brain relies on similar structures and language networks when we are engaging in spoken language and written language. So oftentimes improving our reading and writing improves our spoken abilities and vice versa. So even if it's not the main goal in treatment, for example if the main outcome might be word retrieval, I really believe multimodal learning is important. If, after you've gone through what you want to do say writing it, having them repeat it, maybe copy it, even though that's not the main goal, and it's not slowing the therapy, if it's working for you and your client, then I really think, at the minimum, using written language to support spoken language has a good role. I also think the opposite can be true using spoken language to support written language. So I do think that it's important that we know we are addressing all of language, and that that language skills really do usually move up and down together in aphasia.   Janet: Well said, again. Liz, thank you so very much for joining me today in this fascinating look into friendship, literacy, reading and aphasia. And again, hearty congratulations to you on being named Tavistock, Distinguished Scholar. On behalf of Aphasia Access, I wish you well in your research and clinical efforts, and thank you for taking the time to speak with me today. At this point, I'd also like to thank our listeners for supporting Aphasia Access Conversations by listening to our podcast, including this fascinating discussion with Liz Madden.   Liz: Thanks so much, Janet, I feel like you could just chat with you all day. Thank you again for giving me a chance to highlight some of my work. Also I want to thank everyone with aphasia who has participated in my projects, all my students and collaborators, Aphasia Access and the Tavistock Trust for Aphasia. Thanks again.   Janet: For references and resources mentioned in today's podcast, please see our Show Notes. They are available on our website, www.aphasiaaccess.org. There you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. For Aphasia Access Conversations, I'm Janet Patterson, thanking you again for your ongoing support of Aphasia Access. References Antonucci, T. C., & Akiyama, H. (1987). Social networks in adult life and a preliminary examination of the convoy model. Journal of Gerontology, 42(5), 519–527. https://doi.org/10.1093/geronj/42.5.519 Archer, B.A., Azios, J.H., Douglas, N.F., Strong, K.A., Worrall, L.D. & Simmons-Mackie, N.F. (2024). “I Could Not Talk . . . She Did Everything . . . She's Now My Sister”: People with Aphasia's Perspectives on Friends Who Stuck Around. American Journal of Speech-Language Pathology, 33, 349–368. https://doi.org/10.1044/2023_AJSLP-23-00205 Azios, J.H., Strong, K.A., Archer, B, Douglas, N.F., Simmons-Mackie, N. & Worrall, L. (2021). Friendship matters: A research agenda for aphasia. Aphasiology, 36(3),317-336. https://10.1080/02687038.2021.1873908   Madden, E.B., Bislick, L., Wallace, S.E., Therrien, M.C.S. & Goff-Albritton, R. (2023). Aphasia and friendship: Stroke survivors' self-reported changes over time. Journal of Communication Disorders, 103, 106330. https://doi.org/10.1016/j.jcomdis.2023.106330 Madden, E., Conway, T., Henry, M., Spencer, K., Yorkston, K., & Kendall, D. (2018). The relationship between non-orthographic language abilities and reading performance in chronic aphasia: An exploration of the primary systems hypothesis. Journal of Speech Language Hearing Research, 61, 3038-3054. https://doi.org/10.1044/2018_JSLHR-L-18-0058 Madden, E. B., Torrence, J., & Kendall, D. (2020). Cross-modal generalization of anomia treatment to reading in aphasia. Aphasiology, 35, 875-899. https://doi.org/10.1080/02687038.2020.1734529   Purdy, M., Coppens, P., Madden, E. B., Freed, D., Mozeiko, J., Patterson, J., & Wallace, S. (2018). Reading comprehension treatment in aphasia: A systematic review. Aphasiology, 33(6), 629–651. https://doi.org/10.1080/02687038.2018.1482405 Strong, K.A., Douglas, N.F., Johnson, R., Silverman, M., Azios, J.H. & Archer, B. (2023). Stakeholder-engaged research: What our friendship in aphasia team learned about processes and pitfalls. Topics in Language Disorders, 43(1), 43-56. https://10.1097/TLD.0000000000000302   Therrien, M., Madden, E. B., Bislick, L., & Wallace, S. (2021). Aphasia and Friendship: The Role and Perspectives of Speech-Language Pathologists. American Journal of Speech-Language Pathology, 30(5), 2228-2240.   Resources   Stroke Social Network Scale reference and materials: https://cityaccess.org/tests/ssns/      Aphasia Access Conversations Episode #119 - Finding the person in front of aphasia: A conversation with Lauren Bislick

In this episode you will:  Learn about how the Aphasia-Friendly Reading Approach was developed. Hear about the importance of actively engaging care partners in therapy through this storytelling approach. Learn the importance of celebrating stories and how to host your own version of a Waffle Night.   Katie Strong: Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Katie Strong, a  member of the Aphasia Access Podcast Working Group. I'm also a faculty member at Central Michigan University where I lead the Strong Story Lab. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Harold Regier and Dr. Erin O'Bryan. We'll be talking about the Aphasia-Friendly Reading Approach that Harold developed for his wife, Rosella, who had aphasia and how Dr. O'Bryan took this approach into the lab to refine it for clinicians to use in sessions. Before we dive into the conversation, let me share a few details about our guests. First a bit about Harold. Harold R. Regier, B.S. Ed., BDiv. Theol., is a retired minister with a career path in programs addressing social justice issues. In retirement, his spouse, Rosella, had a stroke resulting in aphasia. His passion shifted to becoming an aphasia care partner focused on helping to recover language and communication skills. He is the author of “A Decade of Aphasia Therapy,” subtitled “Aphasia-Friendly Reading: A Technique for Oral Communication,” published in 2021.  Our second guest is Dr. Erin O'Bryan. Erin is an Assistant Professor in the Department of Communication Sciences and Disorders at Wichita State University, in Wichita, Kansas. Her major research, teaching, and clinical interests focus on helping people with aphasia communicate through scripts, stories, and phrases and teaching students and care partners how to support communication. Dr. O'Bryan directs the Wichita Adult Language Lab whose current projects focus on supported storytelling and Melodic Intonation Therapy. Welcome Harold and Erin. I'm looking forward to our conversation today. Erin O'Bryan: Thank you, Katie! I've been listening to Aphasia Access Podcasts for years, and so many of my heroes have been interviewed in this series. It is really an honor that you invited Harold and I to be on the podcast today! Katie Strong: I am so excited for our listeners to hear about how the Aphasia-Friendly Reading Approach was developed and expanded. This work is near and dear to my heart – particularly in this unique way of developing and telling stories. I feel compelled to disclose to our listeners that I am grateful to have been involved in this work as it was refined for clinical environments. So, I am going to come right out and say, this is my bias. Harold, I'm a big fan of yours and the Aphasia Friendly Reading Approach and of you Erin for how you brought this approach into the lab and studied it so that clinicians can use this approach. So, now let's get started! Harold, can you share a bit with us about how the Aphasia-Friendly Reading Approach came to be? Harold Reiger: Sure. Thank you so much, Dr. Strong, for the privilege of being here to share just a bit of our story. You know, Rosella and I would have celebrated our 65th wedding anniversary if she had stayed with us just a few weeks longer. We had a very long and very happy marriage. She used to kid me, “We've been together so long we know what the other person will say before he or she says it.” Well, actually, aphasia kind of shattered that theory. But maybe there was a little bit of that was true. Well, anyway, Rosella was a retired public-school teacher with part of her career also involving children's curriculum development. She led many workshops, was a storyteller, and was a frequent guest speaker. Communication and broad coalitions were a strong suit for her. So, aphasia, loss of language was a huge loss for her. Perhaps that sets the stage for working so hard to restore some major storytelling. But I'm sure this is the same kind of feeling that every person who is a care partner with the person with aphasia has. How did we discover a technique for storytelling through oral reading? Really, I think I just stumbled into it. The cues came from Rosella. She could say many words. She had a strong voice, but she did not put words together in a way that made it possible for a listener to understand what she meant to communicate. So, I was highly motivated, wishing there was a way to help her tell her stories. Looking back, I now can see three of what I call ‘indicators' that led me to the technique that I eventually called Aphasia-Friendly Reading. They were painting, reading, and church liturgy. So let me explain. Indicator number one, completely on her own, Rosella began to paint. Just shy of two years after her stroke, Rosella began to paint. She painted for four years. She painted 250 paintings. The choice of her subjects were all hers. Objects, scenery, flowers, roadside sightings, trips and vacations, past memories. And yes, stories, family stories, stories that she didn't have words to tell, but she could tell them with a brush. She gave every picture a title or caption, signed it, and dated it. And somehow she found those one, two, or three words to intelligibly, that is accurately, identify the picture that she had just painted. But after four years of painting those pictures, she put her paintbrush down, never to pick it up again. And yet I kept remembering that she was able to identify pictures accurately using those few words to explain what it was that she was telling with her pictures. But then indicator number two came, reading periodicals and books. She underlined periodicals with many circles, much underlining. For a long time, Rosella delved through as many as 40 or 50 books per month. She turned every page, but did she understand what she was reading? Frankly, I often wondered and doubted it. One day, Rosella was reading orally beside me, and I pressed my iPhone video button. Listen to just a few seconds of that reading. And while you listen, think of two questions. Could you understand what she was reading? What was the story that she was trying to tell? And secondly, do you think that Rosella was understanding what she was reading? So listen to that clip. Excerpt of Rosella reading from a book. You heard Rosella reading the story of she and her sister, Anna Grace, requesting radio station KNEX out of McPherson, Kansas to surprise their mother by playing it for her birthday. It was a song that the girls knew that their mother loved. And you heard her read those words, “I love those dear hearts and gentle people.” And then as she continued reading the lyrics of that song, she exclaimed, “Oh, Harold”, which was her way of saying how excited she was to recall that particular story. Now, that explanation, of course, was not in the book. Then there was a third indicator that I recognized, and that was liturgical reading. One day in church we were reading a call to worship displayed on the screen. We were reading responsibly with the leader reading the first line and the congregation reading the second line. I glanced to my side and was surprised to see Rosella reading with the congregation. Maybe it was only the first three or four words of the line, but she read these words accurately. A light went on in my mind. Might this be a hint of how to help Rosella participate in oral reading? Short sentences read with a co-reader who read every other line and written in an easy to follow format? And so I adapted various psalms into very short lines formatted for us to read responsively. I read the first line, she read the second. The result was amazing success. Let me just illustrate by us reading just a very short psalm for you. This is Psalm 150 that Rosella and I will read together. H: Praise the Lord! R: Praise God in his sanctuary. H: Praise God in his mighty firmament. R: Praise Him for his mighty deeds. H: Praise the Lord for his greatness. R: Praise him with the trumpet. H: Praise him with the lute and harp. R: Praise him with the dance. My thought then was, could we try to write other stories and read them in what I began to call Aphasia-Friendly Reading format and style? And so, I began in earnest to try to write other stories. Short sentences, familiar words, larger font. Each line considered a sentence, even if it was only one word. Label the first line H for Harold and the second indented line R for Rosella. As I started reading and continued to read every other line, this could set the tone, the rhythm, and the pattern for saying every word clearly. I thought it was time to try. And then I began to wonder, is there a setting that we could read stories to others? Could we create an audience in some way? When COVID hit, of course, I could not see Rosella in person anymore, for an entire year we were separated. And the only contact we had was FaceTime telephone calls. And those were really a disaster because we found it very difficult to communicate with each other when Roselle was not able to understand me and I wasn't able to understand her, except when we read Aphasia-Friendly stories. And so, I wrote many stories during that year. And we read those stories then as our connection during our FaceTime calls. And somehow we were able to survive COVID. But it was after COVID then that we were able to again get back together occasionally. And I would bring her back to my apartment. And there I would invite friends, usually a couple or two individuals to come over and I would serve waffles. I'm not a kitchen person, but I could make waffles. So, we'd have a simple meal, a simple supper that we could visit with each other and talk about anything that we would like. And Rosella almost always simply said, “I remember exactly”. Because as others told stories that she was familiar with, she could comment that way. Otherwise, her conversation skills were not there. So that was our first hour that we would spend together simply informally visiting with each other. And the second hour that we spent together, we would go to what I would call “my theater,” our living room with a 50-inch television. And there we could read Aphasia-Friendly stories. I would stream the story to the television set. I would have them formatted so that there would be an H for Harold, an R for Rosella, and we would read the story so that the folks who were listening and watching could see the story as well as hear the story. And if we made any mistakes, they could make the corrections in their own mind. There was a way that she was able to, again, participate. It's worth telling. But there was one waffle evening when she turned to me, and said, “China”. I knew she had a story in mind, but her look said, “you tell it. I can't do it.” And so, I did. It was a story about a cracked tea cup And so I decided certainly next Waffle Night we need to let her help tell that story of the cracked tea cup. Here is that story. Cracked Tea Cup. H: This is as story of a cracked tea cup. R: Harold and I were youth sponsors. H: Rose was one of the youth. R: Winifred was her mother. H: She invited me to her home. R: “Thank you,” she said. H: “Thank you for being Rose's sponsor.” R: We visited. H: Before leaving, she said R: “Let me pray for you.” H: It was a pray of blessing… R: …for our work in Mississippi. H: Then she added, R: “Wait!” H: “I have something for you.” R: She got a tea cup. H: Erland brought it to me from China. R: It's cracked. H: Put it in your china cupboard. R: You'll never use it. H: “But you'll remember be when you see it.” R: Sixty years are gone. H: This tea cup is still in my china cupboard. R: And I remember Winifred. H: It reminds me R: Of the grace, H: Of the affirmation, R: Of blessing, H: Of the seminary president's wife.   And so those Waffle Nights became the favorite parts of our week when we could spend time with friends and Rosella could be part of the conversation by reading stories together with me. Katie Strong: So beautiful! This is really just a fabulous way of having such a natural thing, a shared meal, a celebration to share stories. And it sounds like everybody enjoyed Waffle Nights. So, thank you for sharing, Harold. Erin, I was wondering if come into the conversation a bit more and tell us how you got involved with Harold and the Aphasia-Friendly Reading Approach? Erin O'Bryan: Thank you, Katie. Even though I've heard Harold's story so many times, I still get teary every time I hear him talk about their year of not being able to see each other during COVID and the Waffle Nights that were just so wonderful. So, I met Harold in 2019 when I first became an Assistant Professor after 10 years of working as an SLP in healthcare. And Wichita State already had a weekly aphasia group, and I couldn't wait to meet the members. So, I went to aphasia group and there I met all of the care partners in the observation room and Harold showed me a video of him and Rosella reading a story together. I had been watching Rosella in the aphasia group and I'd seen that most of her utterances were short one- to two-word phrases and that much of her communication was nonverbal. But then in the video, she was reading full sentences aloud, taking turns with Harold. And what really struck me was that she was so motivated and happy to read the story. I was so impressed. Harold asked me, “Do you think that other people with aphasia could benefit from doing this?” So many thoughts were running through my mind as we were having this conversation. Earlier in 2019, I had visited Audrey Holland, who was one of my mentors when I was in grad school at University of Arizona. And we'd actually set up this meeting through an online Scrabble chat. She invited me to her home. Katie Strong: How very ‘Audrey'. Erin O'Bryan: Yes, it was lovely. And I got to visit her with all her kitty cats. So, I asked her advice because I was applying for an Assistant Professor position after 10 years of working in health care. And I remember that she was so excited about her speechpathology.com video series and the related book that she was working on with Roberta Elman that she liked to call the Social Imperative of the LPAA, which I believe is the subtitle of that book. And Katie, I think you were a part of both the video series and the book. Katie Strong: I was, yes. Erin O'Bryan:  Well, Audrey just loved that. She was so excited about that, and she told me to learn everything I could about the LPAA. And she said, “I must join Aphasia Access.” She said, “that's where all the important work is happening.” So that year I listened to loads of Aphasia Access podcasts, and I got very familiar with the Chapey and Colleagues LPAA Values chapter. So then as I'm sitting there talking to Harold, I'm thinking about the LPAA value, everyone affected by aphasia is entitled to service. So, I mean, who is affected more than a spouse? So definitely I was thinking about having the care partner being involved seemed like a wonderful thing. And I was also thinking that Harold and Rosella's approach shared so many similarities with Script Training, which I have loved and have been using in healthcare care since grad school. And there also are similarities with ORLA and Multiple Oral Rereading. And all of these are evidence-based treatment approaches. So, I felt pretty confident that Aphasia-Friendly Reading could be a very valuable intervention. So, I said to Harold, “I'd like to try using your approach with other people with aphasia and their care partners in our clinic”. And Harold was happy for us to try it. Katie Strong: I love that. I love that. And just for our listeners, we'll put some links and references in the show notes for some of the approaches like ORLA and Script Training that Erin has mentioned in addition to Harold's book and some other some other resources too. Erin O'Bryan: Yes, thank you, Katie. Those are all wonderful resources for people to be looking at. So, my grad students and I started a pilot study with a woman with aphasia and her husband. And they were actually friends of Harold and Rosella's from their aphasia group. We use the pseudonyms Cora and Dave when we describe them in our papers. It became clear that we needed to make a few adaptations to Harold's approach for use in the clinic. For one thing, I wanted the person with aphasia to have the largest role in selecting the story topic and deciding what she wanted to say. For our first session, we asked Cora and Dave to bring ideas for a story that Cora wanted to tell. And we also suggested they consider bringing some related photos. In our first session, Cora, Dave, my grad student, Addison, and I all sat around the table and together we brainstormed about the story. Cora wanted it to be about a Caribbean cruise that she and Dave had gone on. She brought photos from that trip. Dave helped with supplying names and information about places that Cora wanted to talk about. Places from their shore excursions, such as having their picture taken with a donkey in St. Thomas and visiting the Bomba Shack on the island of Tortola. We got Cora's feedback on every line that was proposed, fine-tuning the story until Cora liked every line. And we also adjusted some of the lines to make them easier for her to say. So once Cora and Dave were happy with the story, we helped them practice during our sessions, one hour per week with my grad student, Addison and I at the clinic. And we gave a printout of the story and a practice log to record notes about their home practice. In this first pilot project, Cora and Dave practiced their story for eight sessions until Cora said she was ready to plan their story sharing celebration. Then they shared their story with their friends in aphasia group. And the clinicians and the other people with aphasia in the room were just amazed. And other people in the aphasia group said, “I want to do that!” So, after two people with aphasia and their care partners did Aphasia-Friendly Reading projects, I wrote a manuscript reporting the pilot results. And Katie, I had seen online that you were an editor of Perspectives at the time. So, I emailed you my manuscript and asked if it was appropriate for Perspectives. And you emailed me back and said, “let's meet online and talk about it.” I was so delighted that you were interested in my project. You suggested that I consider exploring the value of the intervention by interviewing the participants. And I didn't know anything about qualitative research. But, Katie, you helped me write great interview questions for the care partners. And you helped me learn thematic analysis so we could find the themes in the care partner's quotes. And so, after learning from you, I have come to love the thematic analysis process. I really think it leads to deep listening. What we learned from the interviews is that the care partners felt empowered by being included in the intervention and the care partners really valued the collaborative nature of the storytelling project and especially that the intervention was so different than the previous therapy experiences that they had had because it was person-centered, it was fun, and they got to share their story with other people in their lives. So, then the three of us, Harold, Katie, and I wrote our first article about Aphasia-Friendly Reading and it's published in Aphasiology and the title is, “I wasn't just sitting there”: Empowering care partners through the Aphasia-Friendly Reading Approach. And then in 2023, the three of us went to Boston and presented it at ASHA. Katie Strong: Thanks for sharing that, Erin. You know, I think the experience of the care partners saying that therapy was fun important to note. And Harold has mentioned that Rosella thought it was fun, and the other participants thought it was fun. And I guess I just want to bring home that hard work can, can still be fun or therapy can be fun. And especially when it comes from the person with aphasia and their care partners. The topics are generated by the client and care partner. They're sharing things that are really important to them that have happened in their past. I love it. Erin O'Bryan: And one of the care partners even said that they learned better when it was fun. Katie Strong: I love it. Fantastic. Erin, I was wondering if you could share some tips for clinicians who might be listening that are thinking about how they might be able to incorporate this Aphasia-Friendly Reading Approach into their practice. Erin O'Bryan: Thank you for asking, Katie. So, in the past year, you and I have been talking about how we want to make it as easy as possible for clinicians to use our storytelling approaches in regular clinical settings, outside of research. And we really want clinicians to realize that it takes almost no time to prep for a person-centered storytelling session. You just have to go into the session ready to actively listen to what the person with aphasia wants to say. I love the acronym PULSE that you and Barbara Shadden wrote about in your paper, The Power of Story and Identity Renegotiation. And then in our paper, we reviewed PULSE again. So just for our listeners, I'm going to go through it real quickly because I think these are great things for clinicians to keep in mind. The P in pulse is for partnerships, partnering with the person with aphasia. And in the case of Aphasia-Friendly Reading, the clinician partnering with the care partner also. The U in pulse is for uniqueness. So, the clinician should be prepared to help the person with aphasia tell their unique story. The L is for listening. The clinician needs to learn how to really listen. And S is for supporting the person with aphasia in telling their stories. For example, using communication ramps in Supported Conversation for Adults with Aphasia strategies to support communication. And then finally, the E impulse is for explore. So as a clinician, be ready to go off-road with your client to explore the story that they want to share. And as a clinician, know that it's okay, even it's great for you to do that. Katie Strong: I love that. I love that. Erin, I guess that leads us into sharing that we do have a paper that came out in 2024 called Person Centered Stories on the Main Stage in Intervention, which highlights examples from three different story projects, including Aphasia-Friendly Reading. So, we'll link that to the show notes as well. Erin O'Bryan: Yes, and this year at ASHA 2024, Katie, you and I are going to be also giving a talk about this work called Elevating Person-Centered Stories to the Main Stage in Aphasia Intervention. And we are looking forward to presenting this work hopefully to an audience of clinicians. Katie Strong: Yes, yes, we hope to see folks in Seattle for sure. Well, I want to bring back both Harold and Erin into this conversation. And I think one of the things that I've recognized through this collaboration that you and Harold and Rosella and later on I got to be a part of is that we really are all better together. And I was hoping each of you could take a moment to share how this work has changed your thinking or maybe some ideas about sharing with others about what you've learned from this collaboration. Harold Regier: Well, for me, one of the things that I think I really learned from this is that we care partners need the therapist and the therapist needs us care partners. And there are more ways in which we can work together than perhaps sometimes we have done it when we have just been sitting there. And so, I really, I'm so pleased to be able to feel that that we care partners are more involved or can be more involved in the whole therapy process than what so often we have been. But I think that one of the things that the therapist needs to help us understand is when is it appropriate for us to be part of the process and when it is not appropriate for us to be part of the part process. It's not a matter of us being there all the time and sometimes being in the way. So, I think that kind of very frank candid conversation with us would help us understand that. And I certainly understood better that that the role of the care partner in terms of helping the person with aphasia be able to communicate better is very different from the role of the therapist. I never tried to be the person who was the teacher, trying to let Rosella know how she should do better and how we might be able to improve our reading. We just did it and it came out the way it came out. But then when I see how Erin was working with other clients and the persons with aphasia and the family members together identified the stories that they were interested in putting together, and the therapist helped put that together into words that they then could repeat or share together and in a storyline, that that is the place where I think we can be so much more collaborative with the therapist in a process like that. So I just always was telling myself, “Don't be a therapist. Don't be a teacher. Don't try to say, well, you can do better than that. Just simply do what is natural.” And then I wish that the therapist would take the other role and really work hard to help the person with aphasia do better with their reading and their performance. We didn't do our reading for production. We did it for fun, as you were saying earlier. And then we did it because we wanted to share that fun and that experience with others. And that was so very, very satisfying for us. Those are some of the thoughts that have come to me in terms of the relationship between therapist and care partner. Katie Strong: Thanks Harold. Yeah, Erin, any thoughts? Erin O'Bryan: I've learned so much from this collaboration. From Harold, I learned what a difference it makes when a care partner puts so much time and thought into supporting their partner with aphasia's communication and her quality of life. Also I've seen how much Harold has done and I hope that me you know as a busy professor stopping and taking the time to tell him that I saw so much value in what he was doing at home with Rosella reading those videos together. I hope that this helped him realize that it was valuable to share. And I'm thrilled to say that Harold has been going around the state of Kansas giving talks about aphasia at colleges and senior living facilities. He's doing so much and I love to see that. And from collaborating with you, Katie, I've learned the importance of making the story sharing a really beautiful celebration honoring the person with aphasia and you know bringing special things like favorite food treats, beverages, flowers, and especially inviting the people that are important to the person with aphasia. We've now had five or six story sharing celebrations. It seems like everyone is more beautiful than the last. I've learned so much about that. And I've also learned that qualitative research helps me capture the meaningfulness of these projects and the meaningfulness as we're working with people with aphasia and that this research can be so fun and rewarding. Katie Strong: I love that. I love that. As I was listening to you, Erin, respond to Harold, it just sounds like together we can validate one another. The work that you're doing, you were doing with Rosella, Harold is very validating and then Erin bringing it into the lab to test it out and it's all beautiful. It's, it really is. And I guess as I reflect on this thought about what I've learned is to reiterate, Erin, something you said, that listening to family members or care partners and the ideas that they have to engage their loved ones in communication activities are so powerful and taking that time even if you are busy to listen and think and validate and see how that connects to the existing evidence-based literature. I think is really powerful. But I also think that there's this collaboration and the combination of care partners and clinicians and researchers. And of course, the person with aphasia at the center of all of that, making a powerful team to develop innovative methods of storytelling is really one of my big takeaways from all of this. Erin O'Bryan: Yes, that's wonderful. Harold Regier: I would like to give kudos to the therapists who worked with Rosella over the many, many years. Ten years of aphasia therapy, four of which were one-on-one, six of which were part of a support therapy group. Those therapists were such relational people, such encouraging people, and also knew the techniques that work in therapy. So, I wanted to say that those years were very, very meaningful, very, very helpful, and helped us with the day-to-day kind of living with hope, with the expectations that things can continue to get better. Katie Strong: Thank you, Harold. Yeah. Erin, any other thoughts as we wrap this up today? Erin O'Bryan: Well, I just wanted to say that I would never recommend that all intervention involve the care partner because I understand that it's good for the person with aphasia to get one-on-one time with the clinician. But don't forget that that care partner is often with the person with aphasia almost 24/7 and we may only see them one or two hours a week. So, it's so important that we do more to really educate the care partner about how to acknowledge the competence of the person with aphasia and really how to support their communication. So that's why I really want us to do more with in involving the care partner and in intervention. So, I'll get off my soapbox. Thank you, Katie, for letting us share about this project that I love. Katie Strong: I'm so delighted that we could have this time together today. Harold, thank you for your generosity and sharing your ideas and Rosella's stories with us and this beautiful work of Aphasia-Friendly Reading and Erin for your work in the lab and bringing it to the clinic. On behalf of Aphasia Access, thank you for listening. For references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. There you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. For Aphasia Access Conversations, I'm Katie Strong. Thanks again for your ongoing support of Aphasia Access. Contact information for Guests – Harold Regier hrregier@cox.net  Erin O'Bryan, PhD., CCC-SLP erin.obryan@wichita.edu  Resources Aphasia Institute's Introduction to Supported Conversation for Adults with Aphasia (SCA™) eLearning. https://www.aphasia.ca/health-care-providers/education-training/online-options/ Chapey, R., Duchan, J. F., Elman, R. J., Garcia, L. J., Kagan, A., Lyon, J. G., & Simmons-Mackie, N. (2000).Life Participation Approach to Aphasia: A statement of values for the future. The ASHA Leader, 5(3). https://doi.org/10.1044/leader.FTR.05032000.4 Cherney, L. R. (2010). Oral reading for language in aphasia: Impact of aphasia severity oncross-modal outcomes in chronic nonfluent aphasia. Seminars in Speech and Language, 31, 42–51. https://doi.org/10.1055/s-0029-1244952 Cherney, L. Babbitt, E., Oldani, J., & Semik, P. (2005). Efficacy of repeated choral reading for individuals with chronic nonfluent aphasia. [Clinical Aphasiology Paper]  http://aphasiology.pitt.edu/1548/  Kaye, R., & Cherney, L. R. (2016). Script templates: A practical approach to script training in aphasia. Topics in Language Disorders, 36(2), 136–153. https://doi.org/10.1097/2FTLD.0000000000000086 O'Bryan, E. L., Regier, H. R., & Strong, K. A. (2023). “I wasn't just sitting there”: Empowering care partners through the Aphasia-Friendly Reading approach. Aphasiology. https://doi.org/10.1080/02687038.2023.2272956 O'Bryan, E. L., & Strong, K. A. (2024). Person-centered stories on the main stage in intervention: Case examples from the My Story Project, Aphasia! This Is Our World, and Aphasia-Friendly Reading. Perspectives of the ASHA Special Interest Groups. https://pubs.asha.org/doi/10.1044/2024_PERSP-23-00272 Regier, H. (2021). A Decade of Aphasia Therapy: Aphasia-Friendly Reading: A Technique for Oral Communication. Independently published Available on Amazon Strong, K. A. & Shadden, B. B. (2020). Stories at the Heart of Life Participation: Both the Telling and Listening Matter. Chapter 5. In A. L. Holland & R. J. Elman (Eds.) Neurogenic communication disorders and the Life Participation Approach: The social imperative in supporting individuals and families (pp. 105-130) Plural Publishing. Strong, K. A & Shadden, B. B. (2020). The power of story in identity renegotiation: Clinical approaches to supporting persons living with aphasia. ASHA Perspectives, SIG 2, 5, 371-383. https://pubs.asha.org/doi/pdf/10.1044/2019_PERSP-19-00145 Youmans, G., Holland, A., Munoz, M. L., & Bourgeois, M. (2005). Script training and automaticity in two individuals with aphasia. Aphasiology, 19(3/4/5), 435–450. https://doi.org/10.1080/02687030444000877

Interviewer info Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic conditions. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer. In this episode, Lyssa Rome interviews Elissa Larkin about her work to increase communication access within her hospital system via communication partner training programs and her dual role as a speech-language pathologist and bioethicist. Guest info Elissa Larkin, M.S., CCC-SLP, HEC-C is a Bioethicist and Research Speech-Language Pathologist at the Center for Aphasia Research and Treatment at Shirley Ryan AbilityLab. Elissa earned her Master of Science in Communication Disorders with bilingual certification (Spanish) at Arizona State University and completed advanced training in bioethics at Northwestern Medicine Center for Bioethics and Medical Humanities, subsequently earning national certification as a Healthcare Ethics Consultant. Elissa's areas of professional focus include applications of ethical frameworks to promote patient rights and shared-decision making in rehabilitation practice, Life Participation Approach to Aphasia-centered research and treatment, and interprofessional education models to increase communication access and equity for all patients. Elissa received the 2023 American Speech-Language-Hearing Association Louis M. DiCarlo Award for Recent Clinical Achievement for her work in communication access education and advocacy.   Listener Take-aways In today's episode you will: Understand the theory behind implementing communication access strategies at the institutional level in a variety of practice settings. Learn about some techniques to effectively teach supported communication to colleagues from different disciplines. Describe the impact on patients and rehab professionals of communication access.   Edited Transcript   Lyssa Rome   Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech-language pathologist on staff at the Aphasia Center of California, and I see clients with aphasia and other neurogenic communication disorders in my LPAA-focused private practice. I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Elissa Larkin.   Elissa is a bioethicist, certified healthcare bioethics consultant, and research speech language pathologist at the Center for Aphasia Research and Treatment at Shirley Ryan AbilityLab. She's also certified as a bilingual English/Spanish SLP. Her areas of professional focus include applications of ethical frameworks to promote patient rights and shared decision-making in rehabilitation practice, Life Participation Approach to Aphasia-centered research and treatment, and interprofessional education models to increase communication access and equity for all patients. Elissa received the 2023 American Speech Language Hearing Association Louis M. DeCarlo award for recent clinical achievement for her work in communication access education and advocacy.   Elissa, I am so glad to be talking to you today. I'm really excited for this conversation.   Elissa Larkin Thank you so much. Lyssa, I'm very excited too.   Lyssa Rome  I thought we could start by having you introduce yourself a little bit more.   Elissa Larkin Okay, sure, as you said, my name is Elissa Larkin. My pronouns are she/her/hers. In terms of positionality, I am a white, cisgender, middle aged woman, and before we really jump in, I also want to acknowledge and describe the context I work in—as a very resourced research and rehabilitation hospital. I want to explicitly recognize that because a number of things I'll share were made possible by very generous mentors and institutional resources that I know are unique and not necessarily available everywhere. I'll try to offer examples from my experiences, and really hope there will be things people can pick and choose pieces from that may fit where they practice.   Lyssa Rome   Yeah, and having spoken with you about this, I think that there are things that clinicians in a variety of contexts will be able to take away. So you have this really interesting background in bioethics. It's unusual for people in our field, and I'm curious, how did you get there? Why did you decide to do that bioethics training, and how has that informed your practice?   Elissa Larkin    Thank you. What a wonderful question to start with, and I'm grateful for the way that path unfolded. In my clinical practice, as an SLP, I think it was often issues of justice that motivated me the most, alongside my patients and families. We have a very active and engaged ethics department within our hospital, and so I got to partner with the ethicists at times on cases where there were issues that arose for some of my patients with communication disabilities. I was fascinated by how the process worked and how much patient rights and preferences were really centered very genuinely.   At some point, I had the opportunity to do more training in a program that was designed for practicing clinicians—it was like, part time, over two years—arose, and I jumped at it. It was a wonderful grounding, kind of a broad overview and foundation of bioethics, principles and philosophies, theories, frameworks. And I felt like with each reading and class, honestly, Lyssa, I just there would be aha moments where it was like, ”Oh, there's a name for that thing that I've been experiencing.” Or, “Oh, this method of approaching a really complex, gray situation really helps make sense of it and gives you more of a place to start.” I think sometimes in clinical practice, we can feel really swept up in all of these complex things happening. And we want to do something, but it's hard to know where to start or how to even make sense of everything that's going on. I just felt like the clinically oriented ethics training program really helped me with that. And then the more I studied it, the more I wanted to do something with it.   It happened that when I finished the program, the ethics department within my hospital had someone retire from a part-time position, and so I threw my hat in the ring for that, and they hired me for the part time role. They took me on, basically, and provided me kind with an on-the-job fellowship for more of the clinical bioethics practice. And it's just been a really meaningful learning process.   Another piece I think that is important for me is that the program, the Donnelly ethics program here, was founded in 1995 by a physical medicine and rehab physician who's also a disability rights advocate. That very much informed the shape of the program and just how it was embedded in our hospital system, how it operates, and certainly how I was then trained. And so it just really aligned with my own philosophy as an SLP, and there's just been a lot of dovetailing.   As I said, the bioethicists on the team before I joined, none of them were speech pathologists. One has a legal background. There was a neuropsychologist, and then a PhD bioethicist, more academically trained. But they would partner with primary SLPs when the patient needed communication accommodations. Once I came onto the team, there was also a lot of openness. They really embraced my expertise, and I've gotten to work on most of the cases where a patient needs communication accommodations. And they've also really embraced learning these strategies themselves, implementing them. None of my colleagues go to consults now without a clipboard and a Sharpie.   Lyssa Rome Wow, which is just living the dream.   Elissa Larkin  Yeah, they're doing it. You know, they're really embracing it.   Lyssa Rome    You've talked just now about how communication access is a part of the ethics work that you do, right? And it's part of what you think about as a bioethicist. And so I'm wondering how that ties into the work that you've done in trying to broaden access within your hospital system, and maybe you could talk a little bit about what you have done to broaden that access?   Elissa Larkin     Sure. Yeah, so communication partner training has become really central to my practice, and this is a place where I think mentorship is a really important part of my story. I work in the Center for Aphasia Research and Treatment. Leora Cherney is the director of the center, and she has been a mentor to me since before I joined the center, when I was a full-time clinician on the floor. She's someone who makes herself very available to SLPs throughout the organization, and so she provided guidance and support when I was learning about communication partner training and wanting to figure out a way to address things more broadly, as you said.   I think for a long time we have been giving our colleagues fish. You know, it's like we share a patient who has communication needs, and they ask us for advice and modeling to accommodate that one patient's needs. And we do that, and it helps that one patient.   And at some point I realized I wanted to teach people to fish. And so I started thinking about how to do that, and I sort of had this incremental from sort of like mini shoestring projects with a colleague on the floor. We both went to a Supported Communication for Adults with Aphasia, presentation that our colleague, Edie Babbitt, also a generous mentor, gave for our institution as a course. She had gone to the Aphasia Institute and done the Train the Trainer certification. And my colleague and I walked out of there and said, we have to do something like this on the floor. We have to do it more than how we're just doing it in a mini way, within the one hour we get for family education before someone discharges. We need to do something more dedicated.   So my colleague Julie Carpenter and I developed this one-hour training for patients and their care partners, family, friends, whoever could come. We offered a full hour just focused on that, and that sort of began my process. Once we had success with that. We could, I mean, you could see the care partners learning to fish. I wanted to learn more. I wanted to learn how to do it better. I wanted to learn what was behind these trainings in theory. And so I asked for support from the hospital to also go and do the Train the Trainer certification at the Aphasia Institute. And they said, “Yes, as long as in return, we'll ask you to also do a webinar for us.”   My grandmother was a career middle school teacher for over 30 years. She always said, “The best way to learn something is to teach someone else.” So I think the combination of preparing and delivering that webinar and going to the Aphasia Institute and learning just what I was looking for: the theory that was behind things, what they've learned over time, really from experts, and learning their system, helped really grow my knowledge and skills and sort of overall mindset of how to tackle this problem, this big problem, and maybe a bigger way take a little bigger chip out of it.   One of the things that in that Train the Trainer experience that really struck me was they challenged all of us to think about the communication environments where we practice and the systems they're in, and look for opportunities to embed communication partner training. And for me, when I did that, I thought about our clinical ladders program, or professional development structure. You know that clinicians kind of enroll in and take these different electives to grow their skills, but it's in this sort of structured, supported way within the hospital.   We already had a champion model, which is an implementation science model, a way of spreading knowledge and skills more broadly, sort of clinician-to-clinician. And I thought, what if we could have a champion program for communication strategies or communication accommodations? And I started working on that. And again, I went to Leora, who was very supportive and helped me think through how to structure it, and we pitched it as a pilot. In 2017 Edie Babbitt also mentored me in that program. We sort of thought through a curriculum of, how could I try to take what I learned from the smaller communication trainings I'd done and do it in a broader way and over more time.   So it's a year-long program for rehabilitation clinicians, and it started with four clinicians, a small group, but we had all allied health disciplines, represented SLPs, OT, PT, and all levels of care within our organization. We had two inpatient clinicians, an outpatient clinician, and someone from our day rehab program.   Throughout the pilot, the things that I really tried to center in the curriculum were practice—hands-on practice—opportunities to reflect: How did that go? What might you do differently? You know, we video record it, watched video recordings, discussed. And then also, opportunities for clinicians to apply it in their own practice and reflect on that too.   So, you know, the idea was kind of, I did the initial Supported Conversation for Adults with Aphasia training in the beginning, and that was sort of foundational. And then each time there were two months or so in between meetings, and their job was to take what they learned in the meeting and go put it in a practice with their patients. And they kept a log of just like once every couple of weeks, one example where they used communication accommodations with patients. And how did it go? What was the clinical context? What did you do? How'd it go? And that was the fuel for the discussion to start the next meeting off, we'd all come back and share. I borrowed a phrase from a community member with aphasia who runs his own community group. He always starts with thorns and roses. And so that's what we would do in Communication Champions. You know, “What's been challenging and what's going well?” And then also we would problem solve together. If someone brought a challenge and said, “I could really use help,” we would talk about it.   For me, something that was really rich about the experience was I learned a lot too, of course, especially from hearing how clinicians in other disciplines would tackle the problem. Once they have foundational knowledge, sometimes they approach something differently than I would as an SLP, in a way that I thought, “Oh, yeah, I think that'll work better. That totally makes sense.”   We all learned a lot through that part of the process. So I think the program gives that foundational knowledge. They put it into practice. Halfway through, their job changes to focus on mentoring others. So they do a case study presentation to all their teammates, and kind of launch themselves as a Communication Champion. So they're presenting about a patient, hopefully the whole team kind of knows, so it's really relevant and engaging, is the idea. And they emphasize the communication accommodations they used in clinical practice and the impact that it had. And then they tell their teammates, “I'm in this program, I'm learning these skills, and I can be a resource for you.”   And then the program really ends in helping the trainees get to a point where they're then thinking more broadly. We go from the examples of communication accommodations for patients with aphasia to other diagnoses, because people are in the program from all over the organization, we're working with very different patient populations, sometimes so accommodations for a person with locked in syndrome, accommodations for someone on a vent, all the different varieties, cognitive-communication accommodations, and then they think about the communication environment where they practice.   There's a wonderful article by Robin O'Halloran and colleagues from 2012. It's a metasynthesis of surveys done of various stakeholders, including patients with aphasia in an acute care setting and providers, as well as family members I believe, and collecting their input on communication facilitators and barriers. And then, you know, they came up with these six different categories. And so we read the article, and then the champions look at the environment where they work, because we know it can vary a lot across just one organization, which says a lot about how varied our patients' experiences can be, as well. And they break it down, what are the facilitators in my environment? What are barriers? And then we talk about it—is there any low hanging fruit? Are there any barriers that you could address that would be pretty easy to remedy, and are there any that would be really impactful to address?   And some of those trainees actually have gone on to do a project to address some of those barriers. We added a Communication Champions level two, where once you complete the program, if somebody wants to do basically an independent project, they can request support. And, you know, I provide mentorship if needed, I just support them however I can. And there have been some really neat things that have come out of that, too.   Lyssa Rome It's amazing. It sounds like you've developed a really rich program, and I'm curious about how it's been received, what kind of feedback you've gotten from the people that you've trained in the hospital.   Elissa Larkin Thank you. Yeah, every cohort I end with direct feedback from the trainees about the program, all aspects: “What went well? What could be better? Anything else we should add?” And one thing that consistently people have said is that the practice is really valuable. We have actually partnered with community members with aphasia. I've neglected to mention this is all over Zoom at this point, which makes it accessible for people from all parts of the hospital and for our community members.   So the practice, rather than role plays with each other, our community members with aphasia, Zoom in and have conversations and give direct feedback. “You did a good job speaking slowly.” “Could you write more for me?” Things like that. And the clinicians have said that is not only really helpful, it helps them build confidence, and it feels really meaningful. And the community members have been so generous with their time, and they have also said they feel like not only is it fun for them, they also find it meaningful to feel like they're training clinicians who are going to work with other people with communication disabilities and maybe make things more accessible for them. So that's been, I think, a really important part of the program, and I'm so thankful that our community members are always up for being a part of it and giving their time that way and expertise for that matter.   Lyssa Rome    What about other examples of how this has played out for the people who you've trained?   Elissa Larkin  Yeah, I have to say, clinicians have shared some really powerful examples of what this has changed in their practice, and some of them might seem kind of simple like I had an occupational therapist inpatient who worked on a primarily neuro rehab unit, mainly with stroke survivors. She told me about this bathing session that she had with a patient with aphasia, and she was so excited to show me all the communication supports that she had created ahead of time, to walk the patient through what to expect, what the steps were, what her expectations were, to leave room for questions, all ahead of time. And then she said they had this extremely successful session.   I said, “What made it so successful? What did that look like for you?” And she said, “Well, the patient did what I knew she could do. The communication didn't get in the way. It felt really accurate. And it was an important piece of her getting ready to go home, which was also really important to this individual. And so that, to me, was really meaningful.”   I've actually had some prosthetist orthotists join the program as well. So, you know, they're making braces for patients and other kinds of things, and they have had some great stories about just really getting it right. One clinician said that he was working with this patient with aphasia, and he was writing all these options down, and he brought all these examples to show her, and he said she was really particular. She was a very put-together person, and she ended up choosing this, like, hot pink brace. And when he confirmed, like, “This is what you want?” She was just all lit up like, “Yes, this is exactly what I want!” You know, that is meaningful in his practice. He was so proud and excited to tell me that.   And actually, a couple of other people from the P&O department did the program last year, and this year, they're working on making the documents that they use in their department more accessible. So they've taken this on. Their manager totally is supporting it, and I'm kind of just supporting them. So to me, those are the signs that make me feel really hopeful, that the champion part of it is working. You know, I wouldn't even know that those barriers are there. That's not my field of practice, and for them to not only identify these issues, but start to feel like they can address them and improve things for their patients, and then have examples where it works. It's just been really exciting and rewarding.   Lyssa Rome It's amazing to think about, sort of the ripples out from the work that you're doing within the hospital, and then also, ultimately, to patients and people who are in very vulnerable… I mean, you give the OT example choosing a brace, those experiences are so central for patients, and to be able to have such a broad impact by training people from so many different departments is really amazing.   Elissa Larkin    Thank you. And you know, just listening to how you put that, it made me think about again, some of the ethics terms that now bubble up for me are dignity. There was so much dignity preserved there and even uplifted for that patient during her bathing session. The personhood.  The autonomy. And getting your brace exactly how you want it—if you're going to wear this every day, that's a big deal. I think, to be seen, to feel like you can advocate for yourself and your own care, because you're working with a provider who knows how to accommodate your needs.   I think in our field, there have been leaders who have planted these seeds of talking about communication ramps, really looking at the parallels between physical accommodations and communication accommodations. That's another thing in the Communication Champions program: Clinicians have said, “That really makes sense.”   A PT shared—she practiced in day rehab—and she said, “One day, it just dawned on me that the paper and the marker that is my patient's least restrictive device for communication, right? I would never ask them to walk without their walker. Why am I asking them to have a conversation with me without their tools?” And those are the times where it feels like, “Okay!”   I love that word ripples. I feel like there's a lot of empowerment happening in all directions. That's my hope, that the clinicians feel empowered, that when patients are interacting with providers who have this knowledge and these skills, and it's that the patients feel empowered too. And we know that it's complex. It requires ongoing adaptation. And so I hope that in talking about communication partnership, when clinicians are using the knowledge they have and they're trying, patients can partner with them. That's what we want. That's how we want it to be. You know, we're working for them. And we're working together, hopefully.   Lyssa Rome  Well, as you're describing that, it becomes so clear to me how ethics, how justice, and how access, are so deeply intertwined. So it's really clear that in both the ethics programs, and your work as a bioethicist in your hospital system, and the Communication Champions program, you're implementing those ideas, those sort of foundational values that I also hope are central to my practice. I mean, I think it's definitely something that I aspire to. And it's really impressive to me how you've put them into practice.   Elissa Larkin     Oh, thank you. I aspire to them too. Every day. All of this is nothing if not humbling, which is where we want to operate from anyway. Yeah, I'm thinking of one more little story. It might make me emotional to talk about it.   Lyssa Rome Take your time.   Elissa Larkin Yeah, thank you. It's a happy story. It's just… We have a program in our hospital for patients with locked-in syndrome, who've had brain stem strokes and the majority of whom are totally dependent communicators, mainly communicating with their eye movements, right? And I got to meet a patient with locked-in syndrome somewhat recently, who had a complex situation where he hadn't appointed a power of attorney for finances, and at that point he really needed someone to be able to help with those things.   We were asked to do a capacity assessment to see if he could appoint someone. Normally, we don't actually do financial power of attorney, but this was a disability rights issue. It was like, if we can't do it here, then he's not going to probably have another opportunity where the resources are there to complete it. So I partnered with a neuropsychologist who hadn't worked with people with locked-in syndrome before, but she was very familiar with the assessment process, and we were really careful about how we planned the questions and the structure and the flow to give this person his best shot at demonstrating capacity.   In the beginning, I was doing all of the communication with him and the spelling and the choices. But the neuropsychologist—we met with him three times—and by the third time, she held the board and was asking questions directly and helping spell things out. She actually, at times, I think, had a better angle for his eye movements. And it was just, he was just right on. They were in sync, and he totally demonstrated capacity. He indicated who he wanted, and had very clear rationale.   And so when we told him it was clear and he was going to be able to complete this and our team would help him do this and put it in place, he just let out the biggest sigh. And you know, in terms of communication that said so much. You can imagine all the other ways that could have gone, and what an impact that would have on that individual's life, who absolutely deserves to be able to choose who they want to help was such an important thing. And you know, we thanked him for working so hard to communicate with us and being so patient as we learned his communication system. And then he also had a smile, like he was able to just do this spontaneous smile.   You know, those two pieces of communication were just really meaningful. And after a debriefing with my colleague, she said she felt like she learned so much. She feels empowered to use communication accommodations, to reach out if she's working with someone who has different needs and she isn't sure. And that's how I want it to be. That's what I hope for. I hope everybody in the hospital, at some point, has access to training like this. Our security guards, they totally want to be able to do the same thing, right? Admissions folks. Everybody, wants to get to know our patients, to communicate with them in an equitable way. And I do think that having access to training is the answer, and having it tailored.   Lyssa Rome    What a moving story and how fulfilling that must be—both for the clinicians in other disciplines and SLPs too, I guess, who have learned how to provide access. It makes me wonder, as you think about what you've learned from having done this work, what would you like listeners to take away from having heard about the work that you've been doing?   Elissa Larkin    Well, my first thought is you're probably already doing more than you are giving yourself credit for. I think advocacy is kind of built into our practice in some beautiful ways. And I also think everyone should maybe do that same exercise that the Aphasia Institute folks suggested: thinking about the communication environment where we work, and thinking about the systems that are in place, and where there might be opportunities to offer our expertise.   I think that there have been a number of times where colleagues of mine have been so receptive. And, you know, I think there's a lot of trust already between us, the folks that we work with. And so I think if we can find opportunities to offer communication, accommodation, mentorship.   I also think the other piece that I've learned that is so important is—and this is in literature, too, I just have found it to be very true in practice—is tailoring. I have done communication partner training for our campus security, campus safety team. And I used very different examples for them. I talked to them first about when this comes up, what it looks like. It's got to be relatable. And I think that part of the brilliance of the SCA model and other models too, that include role play, is giving people a chance to put ourselves in the shoes of someone who has a communication disability makes all the difference. Then you get it, “Oh, that was really hard. And if I can make that easier for someone, I want to.” And then you got them. Then they're listening. Then they want those strategies. They want to learn the accommodations.   So I think offering our expertise, tailoring, and I think also, thinking about what scope feels reasonable. I talked about teaching people to fish. I also think giving people fish is really important—don't get me wrong.   I worked with a chaplain team also, and one of the chaplains said to me… I asked him, “Do you have any advice if colleagues of mine want to provide communication training to their spiritual care colleagues?” And he said, “You know, I would start with a shared patient and one chaplain, and then get that person to convince their colleagues to listen. And, you know, maybe you can give them some certain tools, or you could just even meet with them.” But I think all those small steps of bridge-building can be really impactful.   I've been thinking a lot about just disability rights history, and I think communication access is at a certain point in its evolution in terms of awareness. And I think all of us can contribute to raising that. It's going to take time and just a whole lot of us chipping away as we can, growing, learning, along with people with lived experiences, and advocating together.   Lyssa Rome    Well I hate to stop the conversation, but that's a really great note to end on. I just really appreciate your sharing these really powerful stories with us, knowing that, I think clinicians in a really broad variety of clinical settings can take some of this and put it into practice so that we can also bring justice and access to the people that we're working with.   Elissa Larkin    Thank you. I agree.   Lyssa Rome Elissa Larkin, it has been so great to talk with you. Thank you so much for sharing all of this with us.   Elissa Larkin     It's been a pleasure to talk with you, Lyssa. Thank you for the opportunity.   Lyssa Rome  And thanks also to our listeners. For the references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access. For Aphasia Access Conversations. I'm Lyssa Rome.   SRAlab Center for Aphasia Research and Treatment link: https://www.sralab.org/research/labs/center-aphasia-research-treatment SRAlab Donnelley Ethics Program link: https://www.sralab.org/services/donnelley-ethics-program Leora Cherney was awarded the 2023 Aphasia Access (inaugural) Sandra O. Glista Mentorship Award (alongside the amazing Robin Pollens) Aphasia Institute Supported Conversation for Adults with Aphasia (SCA) training Dr. O'Halloran's article: O'Halloran, R., Grohn, B., & Worrall, L. (2012). Environmental factors that influence communication for patients with a communication disability in acute hospital stroke units: a qualitative metasynthesis. Archives of physical medicine and rehabilitation, 93(1), S77-S85. Dr. O'Halloran's related tool: https://www.pluralpublishing.com/publications/inpatient-functional-communication-interview-screening-assessment-and-intervention The Communication Environment Survey Tool (CEST) The CEST is Copyrighted. You are welcome to use, copy and distribute the CEST for clinical and/or academic purposes, with the following restrictions: You may not retitle the tool or remove or obscure the SRAlab name or logo, copyright notation or the reference information. You may not state or imply ownership or authorship of the CEST, apply your organization's name or logo to the tool, or charge fees for access to the tool. You may not modify, enhance or otherwise create derivative works of the CEST without the written permission of SRAlab. If you wish to post the CEST on a clinic or academic intranet, please contact our legal counsel at econway@sralab.org for permission to do so.

Welcome to the Aphasia Access, Aphasia Conversations Podcast. I'm Ellen Bernstein Ellis, Director Emeritus of the Aphasia Treatment Program at Cal State East Bay in the Department of Speech, Language and Hearing Sciences, and a member of the Aphasia Access Podcast Working Group.  Aphasia Access strives to provide members with information, inspiration and ideas that support their aphasia care through a variety of educational materials and resources. Brief topic intro I'm today's host for an episode that will feature Dr Felicity Bright. We'll discuss her research looking at factors impacting wellbeing,  engagement and hope. Guest bio   Felicity Bright is a registered speech language therapist and associate professor in rehabilitation at Auckland University of Technology in Aotearoa, New Zealand. Her research examines cultures of care, and in particular, how the cultures and practices in rehabilitation respond to the needs and priorities of patients and those who support them. She has a particular interest in stroke and in the needs and experiences of those with communication impairment through her work, Felicity seeks to support practitioners services and rehabilitation organizations and to provide better person centered care. Listener Take-aways In today's episode you will: Explore how qualitative research promotes the nuanced study of meaningful clinical practice Consider cultural differences in well-being and what this might mean for how we work with people with aphasia and their support networks Reflect on the importance of having discussions with patients about hope and well-being Discuss how culture and organizations impact healthcare practice for individuals with aphasia Show notes edited for conciseness Ellen Bernstein-Ellis Felicity, welcome to our show. Thank you for agreeing to be our guest today. Felicity Bright  Thank you for having me. It's great to be here. Ellen Bernstein-Ellis  Welcome Felicity. We're going to start today with  an icebreaker question. The one you selected for today is, “Do you have  a favorite book or movie about aphasia? Felicity Bright  It was hard to choose one. Actually, I was just looking at my bookshelf and I went back to myself as a fairly new speech and language therapist quite a few years ago now. One that was really transformative for my practice was Talking about Aphasia by Suzie Parr and Sally Bing.  It's a classic, but it was a beautifully written book that really opened my eyes to the experiences of people with aphasia beyond all the technical work that we'd learned in university and so on, but it brought to life the humanity of the people who have aphasia, and really helped me rethink why I do what I do, and what the real impacts of aphasia can be for people. Ellen Bernstein-Ellis  Yes, that's a beautiful book that brings that all to the forefront. And I want you to say the title and author again, in case I spoke over you a moment ago, Felicity Bright The book is Talking about Aphasia and the authors are Susie Parr, Sally Bing and Sue Gilpin with Chris Ireland, Ellen Bernstein-Ellis We'll put that (i.e. citation)  into the reference list on our speaker notes. So thank you. And as we start today's interview, I was wondering if you'd like to share your path from clinician to researcher, because we've had several guests who have started in clinical work and then came to their doctoral work and research a little bit later. So,  I'd love it if you could share that with our listeners. Felicity Bright Sure. So I worked as a speech and language therapist in New Zealand. We are speech language therapists. I worked in a range of neurological settings, from acute stroke neurosurgery, did a little bit of ICU, did some rehab in inpatient services and in community, and really enjoyed that work, but I'd always had a long standing interest in research. I was a bit of a geek, you know, When I was in training, that was, that was me,  I was the geek. And so I'd always kind of expected at some point I would go down the research track. It was prompted after I had my first baby, and my work required me to either go back full time or to not work. And so at that point, I chose to not go back to work full time, and a research job came up at Auckland University of Technology, and I'd followed their work for a while. We don't do speech therapy here, it was rehabilitation research, and I was offered an opportunity to be a research officer doing interventions as part of a randomized control trial with people with traumatic brain injury. And so that kind of gave me the space to bring together some clinical work, but also some research work. It gave me the opportunity to do my Masters alongside this with my fees paid. So that was fantastic. And it really solidified for me that I was quite happy and enjoyed being in that kind of clinical research space. And so I've been in the university now for 15, nearly 16 years Ellen Bernstein-Ellis  Wow, that's a great story. So now you have a 15 year old, right? Felicity Bright I have a 16 year old who is now taller than I am. Ellen Bernstein-Ellis Well, thank you for sharing that.  I'm just really looking forward to a discussion around some, what I consider critical but hard to define and challenging to research topics. like engagement, wellbeing and hope.  I want to start by asking, how did you end up researching a topic like engagement or hope? You did say during our planning meeting that you research things that you're bad at, which made me laugh. So that sounds like some courageous and reflective exploration. So maybe talk a little more about that. Felicity Bright Yeah, I am a bit of a selfish researcher. I research the things that I find tricky and a little bit hard, because for me, I want to learn how can I do better at this? How can I help my students learn how to be better in these areas? How can I help clinicians not make the mistakes that  I've made. I guess trying to be a better clinician has been at the heart of a lot of the work that I do. And you know, when I was working full time in clinical practice, I had patients who would stick with me where I just felt I let them down. They had such a short window of rehabilitation access. They were living with stroke for the rest of their lives. They maybe had eight or 12 weeks of speech therapy. There were just times when I really felt I missed the mark for them, when they didn't get the best rehab they could have had. And it was when I was working in the university in this randomized control trial of goal setting interventions after traumatic brain injury that it started to help me reflect on some of the why I was maybe having some of the challenges I was having. So in this trial, which was quite prescribed because it's a randomized control trial, I was noticing that patients seem to be engaging with these interventions a lot more than the people who I worked with in clinical practice, and that kind of surprised me a little bit. I also noticed that-- we were using Mark Ylvisaker's approach to goal setting around what  is meaningful identity based goal setting--and people were identifying hopes and goals and dreams that would have left me panicking as a speech and language therapist. What do I do about this? But it made me realize, actually, I didn't need to panic about that, and there were ways to engage with people about their hopes and dreams that honored those hopes and dreams, that kept them alive. But also, I could see ways that  I could work with this. I could bring my speech therapy hat and help people. And so it highlighted to me that maybe the things that I had perceived to be difficult or issues, didn't need to be and there were ways to think about these things differently and ways to work differently to better support people. So working on this trial, and I did some quite structured reflection around that with some of my colleagues, writing in auto ethnography around this, gave me the opportunity to reflect on these areas, but also highlighted that there was the real opportunity to do more nuanced and more detailed research that would bring to life different ways that we could support people to hold hope, to engage in rehabilitation that is meaningful and that might be able to produce some quite tangible suggestions to support clinicians and to support the people with stroke who we work with. Ellen Bernstein-Ellis  I just want to say that these intangible, some what we call intangible topics that you've tackled, you always seem to end with tangible suggestions, and that's what I have found so inspiring. And we're going to circle back to hope in a few more questions. But, I just want to say, not only has my clinical thinking been informed and inspired by your research topics, but I've also just learned so much from the variety of qualitative methodologies that you've used in your work. I was wondering if you could share how you developed your expertise in qualitative research, maybe even offer some tips to people wanting to develop their own skill set. And okay, maybe I'm being a little selfish interviewer. You just said selfish researcher, but I found this challenging, and I've been trying to dip my toe, or I've fallen in head first,  trying to develop my skill set around qualitative research. What's your advice?  Felicity Bright  I was really fortunate. I came into research, into a team that had qualitative expertise and that used a variety, but not a wide variety, of different qualitative approaches. And it was a team, and still is a team, that has really high standards for methodological rigor. So to us, it's really important to do research that is robust and rigorous and that anchors back to the underpinning theory and philosophy that underlies each of the approaches that we use. But I was also really lucky in my research that I had supervisors and bosses who really supported innovation, who didn't tell me, no, this is how we do things, who didn't expect me to come into a study and do it just as they had told me to do. But they created the space for me to explore when I was working as a clinical researcher, but also as a master's and as a PhD student. Really had no issues when I said I'm going to go to the library, and I would just sit in the library and read qualitative textbooks and come back with a completely hair brained idea, but that actually turned into something that was really interesting and meaningful. So the Voice Centered Relational Approach that I've used a number of times came from sitting in the library one afternoon and just reading Feminist Research Methodology books. And I think one of my tips would be read outside speech and language therapy. There's amazing work that is happening, not just in the health disciplines or education spaces, but I love reading health sociology journals. I get notifications of a number of different journal types that alert me to different work. One of my recent projects I used Applied Tensions Analysis, which I'd never heard of, but I had a notification come across for a paper about domestic violence settings and kind of how services work. That's not in my area of research or clinical expertise, but there was something within that abstract that made me go, oh, there's an idea there that is similar to the ideas that I'm trying to get at in my stroke research. And so reading widely, I use Twitter a lot as a way of, kind of coming up to date with different research. I use trial and error. I've tried things and got them terribly wrong. I tried Grounded Theory  for about a year for my Masters, and it was atrocious. But also I found that doing research with people with aphasia pushes you to be innovative. A lot of the methodologies as they are published don't necessarily quite fit with the types of interviews or the types of data that we have, and so for me, that's provided an opportunity to test and do things differently. Ellen Bernstein-Ellis I mean, that's an inspiring response and encouraging support. So thank you. During our planning discussion, you also referred me to the Life Thread model and the 2008 article by Ellis Hill, Payne and Ward. What a wonderful article. So thank you for that. I was particularly taken with its implications for clinical practice and how it might guide us in asking questions in a better way to help us understand the social realities of our clients, to prioritize that. To understand how important the social reality is for our clients. Could you please share with our listeners some of the core concepts of the Life Thread model and how it's informed your work? Because I do see the connection there. Felicity Bright  Yeah, I came across this, Carolyn Alice Hill, who developed it, I think, as part of her PhD, was a collaborator of one of my PhD supervisors, and so Cath put me onto it. But the Life Threads model is about identity. And Carolyn's work was in stroke, and she was kind of talking to how identity changes and develops over time. And the Life Threads model talks to how our lives and our identities are made up of many threads, and those threads, they can change over time. But when there's a traumatic event like a stroke, it can cause some threads to break or be frayed, and that can be really challenging. We know there's a lot of work around aphasia and identity construction and identity loss, that's come around. But also what we know is that stroke can also prompt people to think about what are the threads that they want to continue post stroke.  Maybe there are some threads, I found in my hope research, where people are saying,”I don't want to be that person anymore. That's not something that I value”, and for them, sometimes the stroke could be an opportunity to rethink what are the threads that I now want to bring into my life as I weave this new identity of somebody post stroke, but still continues threads that have come through from before the stroke. We know from the hope research that I was doing that it was often really hard for people to see these threads.  It kind of felt like there was a pre-stroke life and a post-stroke life, and that there was quite a disruption. Those threads were cut. And so for me, it prompted questions about how do our conversations as clinicians help people identify the threads that are important for them to thread through their life. What are the new threads that they want to pick up on? You know, some of the work I've done, and we will talk about this a bit later on, around life after stroke, has highlighted how actually a lot of the conversations that happen between clinicians focus around things like tasks and activities and doing things, but there isn't necessarily a lot of conversation about identity or about what is meaningful and what do people want to carry through, and how can clinicians support that? And I would say that if we can kind of tune into the threads that matter to people or that people want to matter in their lives, it gives us a chance to tailor therapy to be much more personalized, more meaningful and more engaging, and I would suggest, probably leads to better outcomes for people. What we know from quite a bit of the research, not just my research, but other work, is that people are often doing this identity work on their own, without support. And we know that it's really hard, because our identities are social and they're relational, and they occur through connection and through communication, all of these things that are disrupted by aphasia, often. And so I think the Life Threads model really prompts us to think how can we as clinicians, support people to engage in conversations about identity, and how can we overtly, really attend to supporting identity within the work that we do. Ellen Bernstein-Ellis  Wow, that's beautiful. And yes, I think there's been, fortunately, a growing understanding of the importance of looking at the lack of support for this identity work with us with our clients, and I can really see how the Life Threads model has played an important role in your thinking and research. I recommend our readers to the article because it has some great examples of how to maybe flex the way you ask questions to help understand the narrative better. So I think it's, a marvelous article, I just want to take a moment and let our listeners know about the fabulous interview that you did with Michael Biel on the ANCDS podcast where you discussed engagement and ways you might incorporate Goal Attainment Scaling to help our clients establish meaningful goals.  I'll put the link to that, along with the citations to all of the work we're discussing today in our show notes. That also gives me a chance to say I don't have to cover everything today, because he did a really good job on those topics. But at the end of that podcast with Michael, you highlighted what was coming next, and that was your work on wellbeing. You've been exploring, and this is a quote by you, “what does it look like to explicitly attend to holistic, long term wellbeing?” Can you discuss some of the takeaways from your 2024 article, Psychosocial Well being After Stroke in Aotearoa, New Zealand, a Qualitative Meta-synthesis with your co authors, Ibell-Roberts and Wilson. Maybe we can just start by talking about the term psychosocial wellbeing. That's an important one to understand, but it can vary depending on one's cultural context.  Just to start with that, so yeah, good luck with all of that! Felicity Bright  It's a massive question, and it's funny, I started with the term psychosocial wellbeing, and I really intentionally used the language of psychosocial to kind of move away from thinking about just psychological wellbeing, which tended to be framed more from a mood perspective. And so I really wanted to be attending to some of the emotional, and the social, and the relational elements of wellbeing. But actually, I've now dropped the psychosocial because what we found is, when we talk to our people with stroke in the community, as part of our research, that term is completely meaningless to them, but the term wellbeing is something that resonates. Wellbeing is a really, firstly, a really nebulous term, but it's also really multifaceted. And I guess the place we've come to is, we view wellbeing as kind of quite unique to an individual, but it's deeply relational, and it's influenced through connection with people, with their cultures and with their communities, and all of those areas need attention. Now, in this piece of work that you referred to, Qualitative Metasynthesis, we were looking across the literature in Aotearoa, New Zealand, when we look at all the work that's been done, looking at life after stroke, and living life after stroke, what do people say about wellbeing and that highlighted that there were a number of features. Now, one thing I want to flag is that within New Zealand, we have an indigenous population, the  Māori population of New Zealand, who have been here for centuries before Pakeha came and colonized New Zealand. And one of the things that's been really important in our work is to really make sure that we are upholding the voices of Māori, who are often either not included in research, or are involved in research that is not particularly culturally safe, or where their perspectives are kind of subsumed within the wider perspectives of the dominant Pakeha, or European culture. And so one of the things we've been really lucky to do with this is to have my colleague BJ Wilson, who was leading the Māori stream, so she engaged with our  Māori data and literature uniquely. So we upheld that in its own right. That's context, because I'm going to talk to two different ways of thinking about wellbeing, one that was general from all of the literature and one that was specific to Māori . So when we look across all of the New Zealand literature, including the  Māori literature, we kind of saw there were probably four key areas that seemed to matter for wellbeing. Having strong connections with family, with old, pre stroke friends, but also with new friends, people who had also been through stroke and had some similar experiences. The sense of self that was connected, where people had a sense of being connected to who they were before the stroke, who they are now, and have an idea of who do I want to be in the future? And there was a sense of coherence, sense of thread that went between those identities. There was, when they experienced wellbeing,  a general sense of stability in the present. So things were okay now. It didn't mean that things were perfect. Some of the literature has suggested that people have to have positive emotions if they're going to have a sense of wellbeing. But actually, this qualitative meta synthesis, and the following qualitative work we've done has suggested, no, life is never 100% positive for any of us, but it's about having a balance of, yes, maybe there are some hard times, but also there are some good times as well.  That overall, there's an equilibrium of emotions, Ellen Bernstein-Ellis  Right the duality, like be able to hold the duality Felicity Bright  Absolutely and kind of be okay with it, recognize that each of them has a time and a place. People also, when there was a sense of wellbeing, had a vision for the future, kind of a sense of moving towards that. So, yes,  they were okay in the present, but they also had a sense that the present is not my future for the rest of my life. I can see a life that is meaningful and enjoyable, and I'm taking steps towards it. But when we looked at the literature from Māori, and this was the analysis led by my colleague, Bobby-Jo, it also came through ideas like whanaungatanga and ngā hono. So whanaungatanga talks to the notion of connections, and ngā hono talks to connections and kind of belonging as well. And that was a sense of connection to whānau. So that is to people's wider kinship networks, not just blood relations like a family would be, but to kinship networks who are meaningful to the person. Having a sense of connection and belonging in their community, but also to places of meaning. So not just people, but to places. We also notice an idea around ko ahau, so being connected to their identity as Māori, to their cultural identity, in a sense that their cultural identity was recognized and was valued and supported by those around them, including healthcare professionals. Ideas of mana and wairua. So mana talks to the inherent standing and value that an individual has. And we all know that in a healthcare context, actually, that can be diminished because you become a patient in the healthcare context. But actually, for wellbeing, having that mana recognized and valued and upheld was really critical. And when one's personhood is understood and respected, that also helped with the sense of wairua, I guess, the spiritual essence of the person. And finally, was the notion of rangatiratanga, which is about autonomy and control and the ability to make decisions for oneself.  We can see that while there were similarities between our  Māori and our non-Māori groups, there were also cultural differences. So for wellbeing, for Māori, had wider integrations with their sense of whānau, their family and kinship networks, and for their culture and wellbeing was unique for each whānau within the research. Ellen Bernstein-Ellis  I'd like to take a moment and have you elaborate a little bit more on that concept of the relationship of whānau to wellbeing, and how the whānau may be impacted by the stroke and subsequent aphasia. So often our family and support network does not receive direct attention. And here, you're elevating it quite a bit, so maybe you could speak to that a bit more. This is really top of mind for me, because I just went to a think tank meeting and hearing the stories of the care providers saying, I'm not sure I mattered in this equation of my spouse's health care rehabilitation.It just really struck me to hear that. So please, let's talk a little bit more about those values. Felicity Bright  Yeah, absolutely, for all of the people in our wellbeing research and in the previous hope research and so on that I've done, kind of people's whānau, their family and their social connections were absolutely critical to their recovery. And what came through, when we were looking at Māori experiences, was particularly also the intergenerational aspect, like sometimes within stroke services, we might think about the partner a little bit, not always particularly well. And I'll talk to that in a minute. But actually, we could also hear within our  Māori whānau, kind of the impacts for generations above and generations below, like the disruption to relationships between grandparents and grandchildren, and how the grandparent who may have aphasia, would usually have a really critical role in passing on family knowledge, or passing on Matauranga, kind of Māori cultural knowledge. But actually, because of the way the stroke affected them, they couldn't do that and take that role on, and so that impacted not just on the relationship, but also kind of on the identity and how Māori culture could be passed on through a whānau unit. But we've also heard exactly what you talk about. Our services are focused around the person with stroke rather than their whānau, but our services are also really short term. And so what  we can see from the research is that the family and the whānau become the connectors and the supporters. They are the consistent people. They hold, usually, deep knowledge of the person that often the healthcare professional doesn't hold. And we're doing some work at the moment around communication access in stroke units.  And even in the context of really significant aphasia, we're hearing about how whānau, even though they don't know about aphasia, they don't know about communication strategies.  But because they know how to read the person, they know their non verbal communication, they are actually really powerful translators, and hold the expertise that, actually, we don't hold as Speech and Language Therapists.  But we also know that the whānau are key in helping people access supports outside the healthcare system, and they do a lot of that navigation work that they are left to do because the healthcare system doesn't do it very well. And like you say, that's really challenging when the whānau's well-being is impacted themselves, you know, but that isn't seen consistently, and it isn't acknowledged. They very quickly become the carer, rather than, this is this person's wife and they've been married for 45 years. Or this is this person's husband, and they've got three young children at home. What is this going to mean for their relationship as a couple, for their relationship as parents? And so the families are talking to us about the exhaustion and the grief and the shock and the loss.  The relief that the person is alive, but again, the duality, there is relief, but there is also distress from the way that the stroke is impacting. And so we would really be calling for much more focus on everybody's wellbeing in this context, because if the wellbeing of whānau is not there, that impacts also on the wellbeing of the person. And I think we need to be shifting how we think about who is our client, whose needs do we serve, and what is our role in supporting the social and relational context around the person Ellen Bernstein-Ellis  That's beautiful. You really highlighted that role, the role of the whānau. And you also identify, Felicity, some other key contributors to wellbeing, and then how those might really impact our clinical goal setting, and I know that's always such an important aspect of how we think as clinicians. You have to document because we're in a system, which we'll talk about. Maybe you can share some other factors that you identified. Felicity Bright  Yeah, so I would be encouraging people to think about what are all the things that seem to support people's long term wellbeing? And those are things, like the relationships they hold within their family, but also within their social networks and within their work networks and so on, Thinking about the different emotions that people might be experiencing. Thinking about hope and what supports people to hold hope, and what do people hope for. Think about the connections that matter to people, the connections to people.  The cultural things that matter for people's wellbeing.  The connections to community activities and roles and so on. And think about the things that matter and are meaningful for individuals that usually fall outside our traditional SMART goals that we use in New Zealand, you know? Is it smart, specific, measurable, achievable, realistic, time bound? What is it? I would be saying our goal should be focusing on what makes a good life for this person. And I would be encouraging you, if you're a clinician, looking at the goals that you're setting for the person.  Where is the good life in those goals? Is that up front and center and documented on the page that everyone can see it? That's something I learned through my goal setting research. That was my first research job, the importance of taking people's words, putting their words on a page, and keeping the words where everybody could see it. So where are the things that support wellbeing and that constitute a good life in our goal setting? Where are they in the interventions that we're doing? And I would be really encouraging people to reflect on how they are making the links explicit between the therapeutic tasks and the things that really matter to people. Because we know from the engagement work that when people can see the link between what they're doing in therapy and what matters to them in life, it is much more likely to be engaging and is much more likely to support them to persist, even when it's difficult, because they can understand this is why I'm doing this thing. Ellen Bernstein-Ellis  Right? Oh, that's beautiful. That really leads nicely into another 2024 article that you've put out focused on wellbeing.  And that's The physical wellbeing is our top priority: Healthcare professionals' challenges in supporting psychosocial wellbeing and stroke services. That article examines what seems to be a mismatch between knowing as clinicians that wellbeing is important, right, and being able to specifically address it within our clinical context. So, we say that we want to, and we know it's important, but the ability to get there, it's quite challenging. I was wondering if you could highlight some of your findings and key recommendations. And I think one of those actually addresses the graduate curriculum. I think that is really going back to the beginning, right? So, please share some of the wonderful work from that article. Felicity Bright So the context for this work is, this is part of a bigger program of research I'm doing around wellbeing after stroke. And this isn't specific to people with aphasia, but we do have people with aphasia in the research.  This research came from this issue-- we've got decades of literature that says that wellbeing is important. We've got a body of literature that says clinicians know wellbeing is important, but we are persistently not addressing wellbeing, and we've got decades of patient experience data that says this is an unmet need. So I was really interested in understanding, why have we got this persistent mismatch between what is known what matters and what is done, and so using an approach called institutional ethnography to try and get into the cultures and the structures that contribute to this, the rationale behind that is I didn't want to be creating solutions that were going to be completely unattainable in the healthcare context. And so I wanted to understand what's going on in the structure of the healthcare system, and how might we be able to work with that or push against that, to create different ways of thinking about how we work to deal with this persistent issue. So this project, this part of the research, we were looking at, why are clinicians not seeming to address wellbeing? And so we interviewed over 30 clinicians, I think, within this research for a whole range of healthcare disciplines. What came through really consistently was everybody wanted to support wellbeing. Everybody thought it was important, but there were a number of factors that made it difficult, and we traced as to why that was so. Firstly, we can look back to when the person first comes into the service. They come into the emergency department. There's often a code stroke that's called. It's a time of really busy early biomedical focus around investigating the stroke, doing assessments. The first couple of days are about intervening to prevent another stroke or to prevent complications. And dysphagia assessment is a classic in New Zealand. Dysphagia assessment is usually prioritized over communication assessment because it is seen to have particular risks and contribute to particular complications. And so we've got this really early biomedical focus as people come through the first few days. Then the focus shifts a little bit to assessments and treating impairment in function. And when we were interviewing clinicians, they were talking about wanting to give people the best chance of recovery, and that linked to ideas around neuroplasticity and the importance of early intervention for maximizing neuroplasticity and brain remodeling. There was a real focus on addressing the practicalities like toileting and dressing and what was needed to get people home. And there was a view often that emotions could wait. We need to do the practicalities first. We can do the other stuff later. This was a time of focusing on helping people survive, get through and get home, and it was in the context of really busy wards.  You know, sitting and watching nurses work, they are flat out. They are understaffed, and they have very limited time to be doing these aspects of work. But all of this contributes in this wider healthcare system that in New Zealand, and I suspect internationally, is short staffed, underfunded. We've got more demand than we've got beds. There is a really strong focus on getting people home. Now that's not inherently bad. A lot of our people that we speak to want to be home. Home is a more healing environment for many people than being in hospital. But when the focus is on getting people home, and that is usually about, is the person physically safe to be home, what can happen is other forms of work and other impacts of stroke can be devalued or be forgotten. And what we could see is people were doing work to support wellbeing within this, but it was kind of a particular form of wellbeing work. They would acknowledge a person's emotions, if they came up through interactions.  They would be responding to the emotional cues that people gave off that they were maybe feeling a bit uncertain or a bit upset. They talked about the importance of listening to the person, but that was often couched in a ‘I can listen for so long, but then I need to get on with my session', because the assessment, the treatment, the moving people forward wasn't important, and they would look to others to help. But the problem is, I would say this, this did a really good job of dealing with the tip of the iceberg, the emotions that were on the surface. But if we think back to what I've just said about what matters for wellbeing,  relationships, connection, sense of self, hope, those things are not addressed. What we saw was that wellbeing was other to the core work of any individual discipline. That didn't work for anybody. Didn't work for our patients that we spoke to. It didn't work for our clinicians as well, because we could also see the moral injury and the burnout that comes when you can't offer the services that you know people are wanting and needing. And when we think about what do we do about that? Well, yeah, it's tricky, and I don't have any great answers, but training and education is one thing. So when we think about wellbeing as seen as other to the core business of the disciplines, we need to look at, what is it that we're teaching our students? What are we saying is core work of speech therapy or of physiotherapy or of nursing. I've got the privilege of chairing the accreditation body for speech therapy in New Zealand, and we are rewriting our accreditation framework at the moment that essentially dictates what programs need to teach. We now have a requirement that programs are teaching about psychosocial wellbeing, and that programs are assessing students on how they're addressing psychosocial wellbeing. We need to look at how pathways for care develop, and where is wellbeing within policies, processes, structures, documentation, Basically, it's nowhere. But we also need to look structurally, and we can talk a little bit more about structures and organizations and cultures, because I think what this work reflects is a wider issue around the cultures and the organization of care that can make it really challenging for clinicians to work in the ways that they do. Ellen Bernstein-Ellis  Oh my gosh, it's a beautiful, beautiful response. I think my favorite quote, and there were many in that article, but the one that said “people with stroke live with the impacts of a stroke system that is designed around biomedical short term care for a lifelong condition and deserve services that support them to thrive, not just survive.” I think it's what we need to bring back into the curriculum for our students to understand. And all of this ties into the importance of understanding how cultures and organizations, like you just said, of care, might impact the therapy we provide to our clients. Why do cultures and organizations of care matter? You're alluding to that. I think we've just started to reflect on that. Felicity Bright  Yeah, I've often felt there's a real risk with the research that I do that we could end up pointing the finger at clinicians of not doing things as well as they could or as well as they should. But actually, we need to understand why is this? Why does it make sense for clinicians to prioritize dysphagia over communication? Why does it make sense to prioritize getting people home, over spending the time on addressing their wider wellbeing? And I've been really lucky to work with Deb Hersh and Stacey Attrill, we did a piece of work that looked at this in the context of how speech therapists enacted therapeutic relationships. And we started by delving into why do people work in the way that they do? We started to see the cultural elements. So the needs, for instance,  your allegiances to colleagues, to be a good team player, to maintain your legitimacy. And particularly for speech therapists, who often have a slightly tenuous role in stroke teams. Physios and OTs are important, but speech therapists often have to kind of fight to kind of have their voices heard, and so that can lead to speechies behaving in particular ways. We can also see how cultures of safety impact on what people prioritize. So Abby Foster has done some beautiful work around the cultures of aphasia care and acute care, and highlighting that actually the priority for physical safety and managing dysphagia risk is privileged over the culture of or a need to think about what is the risk associated with communication and poor communication and people not having communication access. If we understand why people work as they do, and if we understand how the cultures and the structures work, then we can start to unpack them and think about what are the ways that we might be able to do things differently. You know, these cultural factors are very real, and none of them are inherently wrong, like it's not a bad thing that we're trying to prevent people getting aspiration pneumonia. That's really, really important, but we need to understand how these things shape practice and the unintended consequences that they might have for what is not valued and for what work isn't prioritized, and what outcomes don't actually seem to really matter in these contexts. And when we start to make these visible, then that opens up space to think about, how might we be able to do things differently, where we can maybe hold all of these things. And you know, in my work that I'm doing around wellbeing, that's the next phase of our work, is working with clinicians to think about, how might we be able to do things differently, so that it's not one or the other, it's not a dichotomy.  But how do we create space for all of these things to be viewed as important and to be prioritized? Ellen Bernstein-Ellis  You've started to dig into that already, because you have yet another 2024 article that you co-authored with Kayes, Soundy and Drown,  Limited conversations about constrained futures: exploring clinician conversations about life after stroke in inpatient settings. And that examines how clinicians talk about the future with their clients. It analyzes 300 hours of observation of clinical interactions, along with 76 interviews with people with aphasia and 37 clinicians. I just want to say that's an astounding undertaking. So, as I read it, it felt like almost an extension of your 2013 and  2020 articles looking at hope, because you connected how what we say can impact how our clients see their future possibilities. Can you share some of the themes you constructed from all of that amazing data collection? I mean, I'm sorry, I thought 15 interviews were a lot, so then I saw this, and I'm like, oh my goodness, amazing. Felicity Bright  It was a pretty massive piece of work, but it was a real privilege to be able to sit and just observe interactions. And I'm so grateful to our people with stroke, many of whom were like two or three days post stroke, and they had the stranger come along and sit there and observe them for 12 hours, but also to our clinicians, who were quite vulnerable in that process of having somebody observe and analyze what they were doing. But at the same time, I think that work is really valuable for looking at what is going on. What we could see is that the conversations that were being had tended to focus on quite a short term future, and we termed this theme constrained temporal horizons. When clinicians were talking about the future, the vast majority of those conversations were about the immediate future. For doctors and nurses--for nurses, it was often what needs to happen in this shift. For allied health and for doctors, it was what needs to happen before you discharge from our service into the next service. And for some allied health, it might be the first few days at home, but there was a view that talking about the longer term future beyond that should be done by other clinicians who might have more knowledge of what life could look like at that stage. We also found that the talk about quite a constrained future was in the context of actually very limited talk, in the first place. So when we think about communication access, for instance, we think, oh, people with aphasia aren't getting very good communication. Actually, lots of people with stroke are not getting very good communication. Again, thinking about cultural factors, but actually communication is not happening well in stroke units, or, I think within the wider healthcare system.  You know, we've got a very task focused, medically focused situation. And so the conversations that were happening were on topics that were led by healthcare professionals, on the topics that they felt mattered-- the tasks they needed to do, the body structures and impairments. The goals that were set were about what needs to happen before somebody gets home. There was little talk about emotions. There was little talk about how you're feeling about what's going on, or what it might be like for you or for your family when you go home. And so this talk about the emotions and so on and future possibilities was left to patients and to families to raise. And instead, the conversations tended to focus on what the healthcare professionals saw as essential topics for the episode of care. We certainly did see some conversations about the future. So I don't want to be disparaging, and I also want to acknowledge the very partial nature of research. I did not see every single interaction. I know that a lot of these quite personal conversations often happen in things like the shower, when the nurses or the OTS are helping the person shower.  That's one of the few private spaces on the ward. And so I want to acknowledge that my analysis is based on a limited data set, and it isn't based on all the conversations that happened, but certainly there was a trend towards limited conversations. We did see that clinicians would open some doors about the future. So they would talk about possible prognosis in the context of things like upper limb prognostic testing that is offered in some hospitals in New Zealand. We would see clinicians talk about what was meaningful to people, particularly in a context where the patient was struggling to engage, but often when the clinicians were talking about this wider future in this context, it was done to try and plant seeds about what the healthcare professional thought was realistic, and it was done to try and help the person engage in rehabilitation in the context of maybe struggling to engage at the best of times. So I think what we could see was that conversations were limited. They were limited conversations about short term, constrained futures that didn't necessarily set people up with hope for the future, with a sense of possibility, with a sense of even starting that process about what matters, to thinking about what matters to me, what do I want life to look like? Ellen Bernstein-Ellis  Wow, and that really just circles us back to that concept of hope. Your work in hope has just been so meaningful to me. I've been really honored to be the guest lecturer speaking about aphasia to our counseling course that's taught by Dr Shubha Kashinath at Cal State, East Bay. And I've included, from the beginning, your work on hope. I just feel it's critical to give our students ways to understand and think about this construct and the role they can have in offering some hope building clinical interactions. I'd like to close this interview by having you discuss some of your first work that I had the honor to read, and some of the hope affirming strategies that you suggest in your 2020 article. Because I just think that's really a gift. Felicity Bright  One of the things that really fascinated me in this work was how our people with aphasia in the research talked about how they look at their clinician and they are reading them to see, are you somebody who's going to give me hope or not? And if they didn't feel their clinician was going to support their hope or was going to help give them hope, or was going to disparage their hopes, they would shut down and they wouldn't share. And so I think, one of the things is to be reflecting on yourself.  What are the messages that you are giving about how you are a safe person to talk to, about whether you are somebody that they can engage in these risky conversations about? I think there's a couple of things as well. We need to recognize that just because somebody says they hope for something doesn't mean that they expect it to happen. We all have unrealistic hopes and expectations. You know,  psychologist colleagues talk to me about how actually having unrealistic hope is part of being psychologically adjusted, and why should that be different for people with stroke? Who are we to say that we hold the expertise. Now, that's not to say that there aren't challenges. So sometimes you might need to do a bit of a balance of, oh, is this something I need to engage in a conversation about? You know, an example is, if somebody is going to invest quite a bit of money in something that actually, there's no evidence to support and could potentially be problematic. There's a really good guideline I found from Christy Simpson, who's an ethicist, who talked about what are the positive effects that this hope has for people? What would be the impacts of taking it away, both positive, but also, what are the negative things that it would do? And so actually engaging in a bit of a risk analysis to think critically about what is holding this hope doing for somebody. Linked to that in the latest paper we did around recalibrating hope, it really highlighted to me the importance of trusting people to often recalibrate their own hopes. So I went back to my original participants from my 2013 research a couple of years later, and I looked at their experiences of hope over that time. And what we found was most of them recalibrated their hopes. They hoped for different things over that time, and they had done that as they engaged in different activities, as they tried things, as they considered their progress, as they rethought what mattered to them. And so that really highlighted, to me, the need to trust people, but it also highlighted the need to think about, how do we support a context that supports people to do that recalibration. Those who were more likely to recalibrate and hold both hope and realism together were people who had social networks, who were engaging in meaningful activities, and who had a sense of purpose and possibility. One of my participants didn't have that. They had lost their social connections. They had no activities in which they were engaging in what was meaningful, and their hope had shrunk. And so it talks to me again, those earlier conversations we've had about well being, thinking about what's meaningful, what supports wellbeing, that's exactly the same thing that supports hope. How are we supporting people's social wellbeing? How are we supporting their relational wellbeing? How are we helping them connect to what is meaningful and what is possible, not just to their impairments, and maybe what is not working so well. I think it's really important to be explicitly thinking about, what is it that helps people bring joy, have joy? What brings them peace in the present? And how can we help them have that sense that things are okay, even if they're not perfect, but also help them have that sense of looking to a future that's possible. Ellen Bernstein-Ellis  Okay, we only have a minute or two left, but I'm going to throw this last question out to you. Felicity, if you had to pick only one thing that we need to achieve urgently as a community of providers, of professionals, what would that one thing be? This is almost like your elevator pitch. You got 60 seconds here. So, so Felicity Bright  So my one thing, in a long, complex sentence, is that speech and language therapists need to reprioritize communication and supporting people to live well after stroke and aphasia, and they need to consider how we model to our colleagues and to our patients and families, and how we support cultures of care that value relationships and relational work, that value and support communication, and that value and support wellbeing.    Ellen Bernstein-Ellis  Oh my goodness, well said, Felicity. Thank you so much for the honor of having this interview today. I know it's going to be impactful to our listeners, and I want to thank our listeners as well. For references and resources mentioned in today's show,  please see our show notes. They're available on our website@www.aphasiaaccess.org and there you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy, and if you have an idea for a future podcast episode, email us at info@aphasia access.org.  For Aphasia Access Conversations,  I'm Ellen Bernstein-Ellis, and thanks again for your ongoing support of Aphasia Access. Thank you, Felicity. Felicity Bright  My pleasure. Thank you for having me.   References and Resources AUT Centre for Person Centred Research: https://cpcr.aut.ac.nz/our-research Biel, M. (Host). (2016). An interview with Felicity Bright: The patient's engagement and experience with you, the speech pathologist (No. 2) [audio podcast episode). ANCDS. SoundCloud.https://soundcloud.com/ancds/ep-2-an-interview-with-felicity-bright-the-patients-engagement-and-experience?utm_source=www.ancds.org&utm_campaign=wtshare&utm_medium=widget&utm_content=https%253A%252F%252Fsoundcloud.com%252Fancds%252Fep-2-an-interview-with-felicity-bright-the-patients-engagement-and-experience  Bright, F. A., Ibell‐Roberts, C., Featherstone, K., Signal, N., Wilson, B. J., Collier, A., & Fu, V. (2024). ‘Physical well‐being is our top priority': Healthcare professionals' challenges in supporting psychosocial well‐being in stroke services. Health Expectations, 27(2), e14016. Bright, F. A., Ibell-Roberts, C., & Wilson, B. J. (2024). Psychosocial well-being after stroke in Aotearoa New Zealand: a qualitative metasynthesis. Disability and Rehabilitation, 46(10), 2000-2013. Bright, F. A., Kayes, N. M., McCann, C. M., & McPherson, K. M. (2013). Hope in people with aphasia. Aphasiology, 27(1), 41-58. Bright, F. A., McCann, C. M., & Kayes, N. M. (2020). Recalibrating hope: A longitudinal study of the experiences of people with aphasia after stroke. Scandinavian Journal of Caring Sciences, 34(2), 428-435. Bright, F. A., Kayes, N. M., Soundy, A., & Drown, J. (2024). Limited conversations about constrained futures: exploring clinicians' conversations about life after stroke in inpatient settings. Brain Impairment, 25(1). Ellis-Hill, C., Payne, S., & Ward, C. (2008). Using stroke to explore the life thread model: an alternative approach to understanding rehabilitation following an acquired disability. Disability and rehabilitation, 30(2), 150-159. Foster, A., O'Halloran, R., Rose, M., & Worrall, L. (2016). “Communication is taking a back seat”: speech pathologists' perceptions of aphasia management in acute hospital settings. Aphasiology, 30(5), 585-608. Parr, S., Byng, S., & Gilpin, S. (1997). Talking about aphasia: Living with loss of language after stroke. McGraw-Hill Education (UK). Simpson, C. (2004). When hope makes us vulnerable: A discussion of patient-healthcare provider interactions in the context of hope. Bioethics, 18(5), 428-447

  Interviewer info Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic conditions. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer. In this episode, Lyssa Rome interviews Dr. Liss Brunner about how clinicians can incorporate social media into their work with people with acquired brain injuries. Guest info Dr Melissa ‘Liss' Brunner is an early career researcher, lecturer at the University of Sydney, and a certified practicing speech pathologist with over twenty years of experience in supporting adults with swallowing and communication difficulties. Liss has clinical and research expertise in acquired neurologic disorders, particularly working with people who have experienced a stroke or traumatic brain injury (TBI). Diverse research experiences have enabled Liss to build specialist skills in qualitatively driven social media and digital health mixed methods research. Liss's doctoral research laid the necessary groundwork in understanding the complexity of the issues surrounding people with TBI using social media and how it may (or may not) be addressed during their rehabilitation. Listener Take-aways In today's episode you will: Understand how people with acquired brain injury use social media. Learn about barriers and facilitators for safe social media use after brain injury. Describe how speech-language pathologists can target social media use in rehab for people with acquired brain injury.   Edited Transcript Lyssa Rome Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California and I see clients with aphasia and other neurogenic communication disorders in my LPAA-focused private practice. I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.   I'm today's host for an episode that will feature Dr. Melissa or Liss Brunner. Liss is an early-career researcher, lecturer at the University of Sydney, and a certified practicing speech pathologist with over 20 years of experience in supporting adults with swallowing and communication difficulties. Liss has clinical and research expertise in acquired neurologic disorders, particularly working with people who have experienced a stroke or traumatic brain injury. She focuses on qualitatively driven social media and digital health mixed-methods research. Her doctoral research laid the necessary groundwork in understanding the complexity of the issues surrounding people with TBI using social media, and how it may or may not be addressed during their rehabilitation. Dr. Liss Brunner, welcome to the Aphasia Access podcast, I'm so glad to be talking with you.   Dr. Liss Brunner Thanks so much for having me. I'm really, really excited to be here and talk about one of my favorite things.   Lyssa Rome  Great. So I want to just start by asking you what made you want to study social media use among people with acquired brain injuries? And why is it important to study that?   Dr. Liss Brunner  I suppose I want to start by asking you a question, Lyssa, if that's alright. Okay. So, I mean, do you use social media?   Lyssa Rome  I do use social media.   Dr. Liss Brunner  And what are your favorite types of social media? And why do you use them? Hope you don't mind me asking.   Lyssa Rome  That's fine. So I primarily use two social media platforms. I use Facebook for professional reasons. There's a lot of networking amongst speech pathologists on Facebook. I also use it because I get some exercise classes there, so that's kind of nice. And then I also use Instagram, which I primarily go to to find out about knitting and sewing patterns, and to look for gardening ideas. So it's sort of more hobby-based for me.   Dr. Liss Brunner  Perfect. I love that. I mean, I use Facebook also, but it's mainly to stay in touch with like high school or uni friends and my family. And I also use Instagram, and like you lots of hobby-based stuff. I love watching videos around food. Always makes me hungry, but I still love it. But I also love seeing what people are reading. So I will also quite often post what I've just read and get ideas for books that I could be reading and things like that. And I use it a little bit professionally as well to share what I've been doing and what I've been working on. And I use Twitter or X, as it's now known, probably more so professionally. So I do a lot of sharing about the work that I'm doing in there. But I use a whole heap of other platforms, as well, and kind of all for different reasons.   If you think about it, over 60% of the world's population, actually, are active social media users. And we've just talked about how we use more than one platform. The average is actually seven different social media platforms for people who are active users. And so I got interested in supporting others in using social media, because I realized how integral it was starting to become, in my own life, and for the people around me.   After a brain injury, we know it happens like that in a split second. And it can happen to anyone at any age. And so after those brain injuries occur, people lose lots of their friends. And, you know, their relationships just aren't what they used to be. They're quite often strained. They're not as fun as they used to be. And it can be really hard and devastating, not just for that person, but everyone around them, as well. And so family and close friends can find it really challenging to stay connected in a really meaningful way. And you don't really realize how important that is until it changes. And so, in rehab, I really like to support people to build up their social communication skills, with different people, different places. And I really believe that these days, one of those places we need to consider is social media. It's great to stay connected, you can make new friends, you can practice your communication skills in different ways, you can just kind of be included. So you know, you can tell everyone what's going on in your life after injury, or you can ignore that and just talk about other things like gardening and food and stuff. You can use social media to be what you want it to be. So that's kind of why I got into it. And why I think it's important.   Lyssa Rome  It sounds like you've just described both how people use it before their injury, but then also some changes in use after their injury, for example, and think of in the States—I don't know if this is also true in Australia—there's Caring Bridge and Go Fund Me and other sorts of websites where people are sharing information about their rehab process and about what's going on with someone who's had a brain injury or another kind of illness. Tell us a little bit about how people with acquired brain injuries are using social media.   Dr. Liss Brunner Yeah, absolutely. I think this is one of the most interesting things to me is that I've interviewed lots of people after a brain injury about how they use social media. And just like many of us, they use a variety of platforms, they have individual preferences, they use them for different purposes. Some prefer Instagram, others prefer Facebook, others prefer online gaming with their friends. Many of them use social media for making and maintaining relationships. So that connection, others use it for altruism, so supporting others in need and sharing their experiences and strategies after a brain injury. But others also use it for advocacy, and activism. So sharing their experiences after brain injury to raise awareness, and reduce stigma that can be associated with it. Others are really active in contacting politicians and advocating for better support services and infrastructure. So they use it for a multitude of reasons. And it's quite often deeply personal, the way in which they do so.   Unfortunately, I did also find out that quite often, people kind of relearning to use social media, sort of through trial and error. So they don't necessarily get lots of support to do it. they've encountered lots of challenges in using it well, so they can have some difficulties with cognitive fatigue, or even just navigating the different social media platforms because they're quite often apt to change, so to speak.   Lyssa Rome RIght. Yeah. It sounds like they're both some real benefits to people with acquired brain injuries, but then also some risks involved. So maybe you could tell us a little bit more about some of those risks and some of the benefits for people with acquired brain injury using social media?   Dr. Liss Brunner  Yeah, absolutely. I mean, I'll start with the good stuff. So there's lots of advantages to using social media. I mean, obviously, we can use it to create connections, we can totally use it for the entertainment factor—I do all the time. But it's also a huge source of information and news can be an absolutely wonderful platform for sharing information and advocating for awareness. As I've said, I think it's a really great way to share your thoughts and connect with others if you're feeling particularly isolated. And I know that for people after brain injury, who have difficulty with their social communication, there's lots of advantages in particular.   So some people may talk a lot more after their brain injury and some people may feel that they talk a bit too much. And so, you know, platforms like Twitter, or X, that have a shorter amount of space for you to make a post, that might mean that they have an opportunity to really work on limiting how much they say. And likewise, for those who have the opposite issue, and they kind of are more likely to struggle to find things to say, the same platform could be seen as a bit of a relief, because there's less pressure to write really long posts. So, you know, I think there are functions of the different social media platforms that can be really advantageous for people who have difficulties communicating.   For people who have difficulties concentrating in fast-paced conversations in person, the asynchronous approach of social media can be again, provide less pressure, they don't have to think and respond in the moment, they can actually take their time to do that. So that can provide a bit of relief as well. And I find in general, people are way more tolerant around incorrect spelling and grammar and things like that in social media. And you can type words, you can add pictures. I love using GIFs and memes and emoticons. So, you know, all of these things can be used to make communication easier in these platforms. So lots of advantages, I think that we could kind of really draw on to support people.   But obviously, there's also that downside, that darker side of social media, there's lots of risks. And it can be a really tricky space to navigate with and without a brain injury. And there's lots of concern, particularly from clinicians and family and friends around the real and sometimes perceived risks of using social media after a brain injury. So I've spoken to lots of clinicians and family members over the years. And they often tell me about how they're really worried about people being fairly vulnerable online, that they're at risk of being exploited, that they may ruin their own reputation by some of the things that they're saying online.   And quite often, as clinicians, I suppose we can act as gatekeepers in a way. And so there's often this really big focus on our duty of care in the clinical context, because we want to prevent harm, we want people to do well and not actually be hurt more. And so we can be really risk averse, I suppose. There can be this real sense of responsibility for minimizing all of the risks. And so there's lots of issues around people getting fixated on social media, and that might lead to cognitive fatigue. It could be that they're having negative mental health or emotional effects of what they're seeing in social media. They could start withdrawing from in-person interactions because they're spending a lot of time online.   I mentioned reputation management. So potentially people would say something online that will influence how other people perceive them. So whilst people are in post traumatic amnesia after a traumatic brain injury, they may regret posting something. Others have reported that their family members tell them that they're saying inappropriate things online and that's negatively affected their relationships. And sometimes it's affected their employment opportunities down the track as well. Others have had difficulties managing their finances and security due to difficulties with disinhibition and impulsivity. And so there's lots of concerns in particular around things like cyber scams and, and things like that.   Lyssa Rome  It sounds like the risks that a lot of us are faced with when we're using social media platforms. But even more so right, because of some of the issues specific to people with brain injuries that you've just described?   Dr. Liss Brunner Absolutely.   Lyssa Rome  I'm wondering what kind of barriers and facilitators there are to successful social media use? You mentioned clinicians, reluctance, or sort of concern about the risks? What are some of the other things that we should be thinking about?   Dr. Liss Brunner  Yeah, absolutely. I mean, there's lots of barriers. But there's also lots of facilitators as well, which is good. I've spoken about some of the risks, but some of the other barriers are sometimes quite immediate. So some people might have physical barriers to using social media. So their vision might have changed, their hand mobility, and fine motor control might have changed, or they might not be able to independently go and get their device. And so they might need someone to go and get it for them. Others may not have devices, or reliable internet access, particularly if they're in a hospital, sometimes internet access is restricted. So there's those actual accessibility issues.   In terms of the changes in cognitive communication, I think, a lot of what we can see in in person interactions—so when people are having a face to face conversation—those sorts of changes we see after a brain injury can often be influencing their online interactions just as much. So for example, after a traumatic brain injury, inattention, and being easily distracted, can be quite an issue for many. And so you might see this where someone will start responding to a post, but they'll get distracted, and they'll send, you know, a message that they either didn't mean to send or it wasn't complete, or it gets misinterpreted. And it can just unravel quite quickly.   Sometimes, you know, emotional control changes quite often after an acquired brain injury. So managing your feelings can be really challenging. So some people can get really overloaded by the amount of information in their social media feeds and timelines. Or they might get really overwhelmed when they're seeing negative or sad posts. Like, obviously, we're seeing lots of sad things and disturbing things in the news, in particular, online at the moment, there's lots of conflict around the world. So being able to manage your feelings can be really challenging if you're not conscious about the influence social media posts can have on you.   Sometimes, you know, there's issues in impulse control. And so some people will get sent friend requests and they will click accept without thinking, Oh, actually, do I know this person? Or do I want to have this person as a friend or, you know, posting before you think about what you're saying and how someone's going to take that and what the potential repercussions might be? It could be that, you know, people have difficulty finding the right words and that they may put words in that they're not wanting To say, and again, that can get misinterpreted.   The other thing is that there's lots of information. And so it's quite hard to find and constantly changing. And I feel like that can increase the demands on people's memory, and how they sort through and organize information. So that can be overwhelming and challenging as well.   On the flip side, there's lots of facilitators that we can harness for good to combat some of these things. And during my PhD, I identified five factors that influence social media use after a brain injury. And sometimes these things are barriers, and sometimes they're facilitators. So I think it's really quite helpful to think about things in this way.   And so the first factor is purpose. So it's really important to think about, if someone is motivated to use social media, what's motivating for them? It could be that they are wanting to practice their communication. It could be that they are wanting to connect. They might want to find a romantic partner. They might want to figure out who they are now, after their brain injury. It could be just to fill in time, right? So purpose really influences how someone uses social media.   The second factor, I think, relates to knowledge and experience. And so it's not just that person with a brain injury, but also the people around them. So some of the barriers can be that people aren't really clear on how to support people to use social media. And that could be because of their own experience and ability, and confidence. So all of those things can really influence how you use social media.   The big one, that third factor is caution, I think, you know, it's really critical to be aware of the risks, which I've spoken about, and how to navigate them.   The fourth factor is networks. And so it's really kind of thinking about who is your online network of people? So who do you want to contact? Who do you maybe not want to stay in contact with? And increasing opportunities to have really successful interactions with those people.   And the fifth concept is really around support. So trying to find structures that influence success in social media interactions. So giving people practical supports and resources, whether that's an actual person, or whether it's a training program, or practice, with someone setting them up with a PR so they can have someone to practice with regularly.   I think they're the five different factors that really influence how someone who's going to use social media, and whether they use it well, safely. And meaningfully, I suppose, because that's what you want it to be. The other thing that I think is really important, from a clinician perspective, in terms of facilitating use is to kind of be proactive. So rather than being reactive, and just only stepping in when problems happen is actually being a person that can support people with brain injury to use social media and asking those questions. So I feel like some of the research that I've been doing is really kind of been critical to try and find guidance for clinicians on how to do that, and how to have those conversations.   So I spoke about those five different factors. I reckon if, for example, you were wanting to think about someone's purpose in social media, really, you just need to identify what platforms they want to use? Why do they want to use them? What's going to be really meaningful for them? So writing that down and thinking: Okay, who are you connecting with in that? Why do you want to use it? How can we make that better for you? So it's a really nice way to just start those conversations.   Lyssa Rome  When I think about clinically sort of getting to know someone, part of it is who are you communicating with? Like, who are you having conversations with? And if we think a little bit more broadly, you know, it's not just conversations in person or over the phone. And so to take an inventory that really reflects the person's actual communication across all different kinds of settings, is really important. I'm curious how people with acquired brain injuries are using these different social media platforms, you sort of mentioned some of them along the way, as you've been discussing the risks and the benefits, etc. But I just wonder if you could say a little bit more about that.   Dr. Liss Brunner  Yeah, I mean, we've been doing a few different little studies looking at how brain injury is spoken about, and who's using it in different platforms. So we've done a study, study looking at Twitter, it was Twitter, then it's now called X, I suppose. But back then it was Twitter. And we kind of really just explored what was being said about brain injury. And actually, I found there were actually lots of people with brain injury using the platform to connect with others to share issues around their health, life after their injury, raising awareness, and also as a source of inspiration and hope. So both giving and receiving those messages. So that was really nice.   And then we've recently actually just completed some studies where we looked similarly, at YouTube and Instagram. And in both platforms, it was really clear that this is a space where people are sharing their stories of change. And because of the inherent functions of the platforms, they can share content that they make, or reshare, and a lot of it is quite visual. It really gives that person who's sharing the content, a lot more control over how they tell their stories. And I love seeing and hearing how people use social media to tell their stories. We're all so different. And even though there are similarities amongst the stories that people are telling about their brain injury, there's so much personalization and individuality. It's fantastic to see.   In some of the interviews that I've done, you know, one person told me about how they use Instagram to share their photos of the world so that they were a photographer before their injury. And since their injury, they see the world differently. And they're taking very different photos.   So I think everyone's using different platforms the way in which they want to, yeah, it's super interesting. Others have made using social media their vocation, so as a way of connecting with others who've had a brain injury and sharing, you know, tips and ideas to support recovery. And so that's kind of their job, and it's giving them that sense of purpose. Not just in using social media, but purpose in life and giving back and being able to feel like they have a sense of belonging and contribution. So, yeah, I find it super interesting. I love it.   Lyssa Rome Well, and one of the reasons that I was really drawn to your work and wanted to talk with you on this podcast is that it seems like at its heart, what you've been studying and working on is promoting and enabling life participation for people with acquired brain injuries for whom social media is an important life activity—either was already before the injury or is now after the injury. And, to me, it's just, it's so meaningful for people and to sort of turn our attention toward social media in this way, I think is great. So it makes me wonder, to what extent are rehab professionals, speech language pathologists and others, addressing social media use with their clients or their patients?   Dr. Liss Brunner This is a really hard answer to give. Because I'm speaking generally. And I know that, you know, we are very individual as clinicians as well. But when I used to talk about this, you know, I started more than a decade ago in this space, I would ask clinicians when I was talking at presentations, who's worked with clients on using social media, and I would maybe have one person put their hand up. Now, when I ask that question, the response is actually very different, and I would say, you know, the majority of people would indicate that they've worked on using social media in some way, shape, or form.   But I feel like we don't necessarily have lots of guidance on how to do that well. And so lots of clinicians have said to me that they feel kind of lost when it comes to using social media. Not everyone uses social media and some of us have our preferred platforms that we feel comfortable with and don't know anything about some of the other platforms, right? Some of us say using social media is just a bit of fun. And it's, you know, a bit of a distraction from real life. So we have lots of attitudes and beliefs around it.   And there's lots of challenges in addressing social media, because as I said, the platforms are constantly changing. And it's really hard to stay up-to-date. And so lots of people are really uncertain about all of those factors, and then they are, we've also got all of these medical and legal responsibilities, and we don't know where our boundaries are, in terms of navigating risks— whether we should be gatekeepers, or whether we should be just supporting people with information and education and coming in and supporting them if problems happen. Lots of people just basically want guidance, was what I heard. They want to know when to introduce the use of social media. They want to know when to let go of control of how people use it, and how to encourage really positive interactions. I feel like a lot of people have told me that because they're so uncertain, they tend to be mostly restrictive, rather than proactive. And so that restrictive practice occurs in lots of different ways.   So it could be encouraging, and helping families to keep devices at home and away from people who have a brain injury. It could be that they give people the devices, but they limit the internet connectivity, so they can't use them functionally. Or it could be that they manipulate the privacy settings. So it allows people just to lurk and watch other people's posts, but doesn't let them post and interact. And so, you know, there's often issues where family members are encouraged to monitor social media posts for appropriate content and things like that. And I find that's, you know, not ideal for anyone, really, no one wants to have to do that. And no one wants that to happen to them. And it can create lots more barriers to autonomy. I'm pretty sure if my parents were telling me what to do and what not to do in social media, I'd not have a great response. And I also feel if I tried to tell my kids what to do and what not to do, they'd probably go straight out and do what I told them not to do. Because as if I would not because I'm old. Right? And not cool. There's probably another word for cool now that I don't know.   You know, I think it's, it's really personal. It's tricky to navigate. And as clinicians, we've got to be really clear about what our attitudes and beliefs are and how they influence what we perceive as appropriate or inappropriate and how we navigate those conversations. I love referring people to the Mark Ylvisaker and Tim Feenye paper that's about Dobermans and Poodles. Because it really does push people to think about how we interact and influence people in our rehabilitation practices. So I think as clinicians, we want to be proactive, but we're just not quite clear on how we should do it.   Lyssa Rome In one of your papers, you wrote about how we as speech language pathologists can move from a sort of paternalistic attitude toward supporting the autonomy of our clients with acquired brain injury. And it's something I think about a lot, not necessarily just in this context of social media, but in all other kinds of ways. And I'm wondering if you could say a little bit more about that, and about how SLPs and other rehab professionals should be thinking about including social media training and the work we do?   Dr. Liss Brunner  Yeah, it's really tricky. Because, you know, we don't want to be restrictive. We don't want to be gatekeepers, we want to be supportive. And I feel like sometimes when we don't have guidance, from our evidence in the research or practical resources, we can flounder a little bit, particularly when we know there are so many risks associated with something like using social media. I think we can probably all acknowledge that restriction isn't the answer, because it doesn't set people up for real life. It doesn't give them opportunities to learn from mistakes, which is what we would do a lot of the time in real life.   I think one of the things that we can really do is harness the knowledge and skills of the person themselves, to help us as clinicians to know more about how they want to use social media, which platforms they're interested in, particularly if we've got no clue about how to use it ourselves. And so this could be a way to really educate ourselves, and kind of have more of a collaborative approach with that person. So you can set goals together, you can identify what's going to look like successful social media is to that person. How can we use what they did before their brain injury to guide us in terms of, is this something you want to get back to? Or do you want to do something different now? Those sorts of things. We can look for ways to provide them opportunities for participation, and give them some instructions on what might work really well. Let them go and try that. Give them education and really constructive feedback, so that they're working towards those positive interactions and trying to mitigate those risks in that really proactive way. Obviously, I think we need some policy around this, and guidance so that we can actively support people.   But I think probably one of the first things that we need to do is address social media goals in rehabilitation. And these can be informed by other successful brain injury rehabilitation approaches, you know, so we've got lots of information on functional rehabilitation, we know that more meaningful rehab is motivating and more likely to have better outcomes. And we could adopt strategies that have been used in rehab that support other activities that we feel are higher risk. So always I think of return to driving. You know, we support people, occupational therapists, support people to return to drive and I think that's inherently really dangerous. But we do it because we see it as a really important goal for people to return to after injury. I kind of feel that social media is kind of in a similar vein, we know there's risks, let's put education and practice in place to support them to do well.   Lyssa Rome  Speaking of education and practice, you've created a training program for people with acquired brain injuries on how they can start to successfully use social media. So can you describe that and tell us a little bit about that program?   Dr. Liss Brunner  Yeah, I mean, I worked as a clinician for many, many years before I got suckered into research and fell in love with it. And so I always want to think about the practical implications of the research that I'm doing, I want to provide resources and guidance. And so I was very lucky to be able to work with the team at Sydney Uni, and the University of Technology in Sydney, and brain Injury Australia. We were able to source some funding through a grant, which was fabulous. And we had this larger project called the Social Brain Toolkit. And part of that was developing social-ABI-lity. And so it meant that we were able to work with people who've had a brain injury, some family members, some clinicians, and other researchers to design this social-ABI-lity program. And essentially, it's a free online training program on how to use social media after brain injury.   Very simply, it's designed so that people with a brain injury can do it themselves, or they can do it with family or a friend or a clinician to support them. It takes about two to three hours to work through everything. And there's four modules, and so the modules are: What is social media;  staying safe in social media; how do I use social media; and who can I connect with in social media. And we've really used metacognitive principles to support people to make a plan for using social media in a way that really suits them. And so we wanted to give them ideas on staying safe. When using social media and cyber safety, even those, there's one module on staying safe. Cyber safety is actually threaded through all four modules, because it was such a priority for everyone that we spoke to. And it just provides people with opportunities to learn about using social media, and really promoting the idea of finding social media buddies and building up a support network in social media. So there's written info, there's videos, there's questions to work through, there's a printable worksheet, so people can write down and keep the messages of the four modules. And things like that.   We've run a pilot study, so that people could test out the prototype. And they found it was quite valuable. They thought it was really engaging and functional. They also told us what they didn't think was working. So we tweaked it, and hopefully made it better. And then we actually piloted that again, because we knew that just the training by itself was probably not going to achieve the best outcomes possible. We wanted to know whether group intervention would help. So we kind of got people to do the social-ABI-lity program, and also a peer practice group. So we set up the social-ABI-lity plus a social media practice group kind of thing. We set up some Facebook groups, because Facebook is one of the social media platforms that lets you set up a group and have private conversations. But you also don't necessarily have to be friends with everyone. So it meant people could keep their distance if they wanted to.   In this study, we ran two groups for 12 weeks. And we basically just gave them stuff to talk about and connect with in this Facebook group. We also added in occasional meetups on Zoom so that people could meet each other face-to-face, even though it was online. So, you know, at the same time, they could have conversations and get to know each other in that way and see each other's faces. And the two groups found that this was really beneficial. So they had more confidence in using social media and they were just thinking about using it in a very different way.   The other thing that we thought about though was we know that there's just this connection between people who've actually lived the path, rather than, you know, being directed by someone like me who hasn't raised this difference in connection. And so we wanted to know whether having a peer moderated group would actually change things. And so we've recently just run a peer-moderated group. And so we kind of sweet-talked two of our previous participants who were quite active in the groups and said, “Do you want to be part of our research team? Would you like to moderate a group? And we'll see what happens.” And so we negotiated with these two awesome people. And they ran the group for eight weeks. So we shortened it a little bit just to make it more feasible and test it out. And before we started the group, we met with our two peer moderators, and said, “What do you feel comfortable doing? What don't you feel comfortable doing?” And we negotiated our roles before we even started, and even though they weren't significant changes in confidence, or any of the quantitative data that we collected in terms of quality of life and things like that, the conversations that people had, were just, I'm going to use one of the moderators words “profound.” They were so different, they were more poignant, and deeper, the conversations that they had in these peer-moderated group, and the reflections that all of the participants had really showed that they connected on a really different level, which was quite lovely. Again, they found it was all feasible and engaging. But there was something about that added element of the peer moderators that made it extra awesome for the people involved, as well as for the peer moderators themselves, they just found that they had improved confidence and improved sense of self for being involved in it. So it was that sense of giving back that really made that group scene, which was really lovely.   Lyssa Rome  I think that that's so exciting. And it makes me wonder what else you're working on? And what's coming next.   Dr. Liss Brunner Yeah, I mean, there's so many ideas, and it's just a matter of actually making them happen. Lyssa, at the moment, were actually designing a social media communication assessment tool that we hope will really help not just clinicians, but also people with brain injury, to start this process of figuring out their purpose in using social media and what their goals might be. And so we're designing it with people with brain injury and clinicians around the world. So that hopefully, it will be really relevant to everyone to just start those conversations. So we hope to have the first version of this available to share freely, hopefully, by the end of the year—next year, definitely. But I'm really excited to see how that pans out. That's the first next step.   Lyssa Rome    Yeah. I think that that is really exciting. And it it, it reminds me of something else that you've written about, which is how SLPs can almost assess their own social media use or think about it, and step back and think about it in order to better help their clients in their social media goals. And I'm wondering if you could explain a little bit about that for our listeners.   Dr. Liss Brunner    This is some work that I actually really loved doing. I think one of the things that can really support how we're able to assist others in using social media is to be really aware of our own use of social media. And I think in this particular paper that you're referring to, it's like we use the metaphor of a garden. And we kind of encouraged people to think about their own use and purpose of using social media. And we used this very arty based approach to thinking about our professional social media identity. And so we kind of describe this process of visualizing your own social media garden. And so it's a metaphor you can use to think about your purpose and build a strategy around how you're going to achieve that. And I think it can be used to get kind of like this real understanding of what social media really means to you, and identify aspects of your own professional identity that are important and could be enriched through using social media. So I think, you know, if you're interested in not just how you use social media professionally, but also how you can help people clinically, in this paper, we really tried to provide another resource to outline strategies for using different techniques to build up your professional and clinical practice.   Lyssa Rome For me, as a clinician, I think one of the takeaways from this conversation and from reading your articles, which we will link to in the show notes, is this idea that we should be reflecting on our own social media use, and our own assumptions about social media use and its risks and its benefits. What other takeaways should listeners be thinking about—things that they can implement in their own clinical practice?   Dr. Liss Brunner    I couldn't agree more, Lyssa. I think reflecting on your own social media use is really powerful. I think it's a really good place to start. And I think then you can just start by having the conversation with people asking about why they use social media. Which platforms are you interested in? What do you want to get out of using social media? Who do you want to connect with? Just having those conversations, I think will give you very rich data to start making some decisions, having ideas around what goals could be targeted. I think, as you said, we'll put the link to some of my papers. But certainly the facilitators that I've mentioned in the AJSLP paper, can be kind of those five factors that can really guide you in thinking about the different aspects to consider around social media use. So you can kind of use that as a bit of a guide, until we're able to create and trial new resources to support that further.   I think there's probably three key resources that I typically recommend that people check out if they want to support people to use social media. I think the obvious one that I'll point out is the social-ABI-ity program. And we'll pop the link in there. I think the other thing that I'd like to mention is another free online training program called Cyberability. And this has actually been designed by some colleagues here in Australia at Monash University, led by Dr. Kate Gould. But it's been built in collaboration, again, with people with brain injury, but who have also been scammed online. So they've got that lived experience. And they contribute their strategies and tips and what they've learned from going through that experience in this training. So I'll make sure that we get the Cyberability training link for you as well. The other resource that I find really useful here in Australia, is that we've got the Australian eSafety Commissioner website. And it's actually been supported by our government to provide lots of advice and resources on staying safe online. And I think, for kids in particular, I can be really handy. So I don't particularly work with kids. But I find that some of the resources there are really good if you do work with children. And there's actually an eSafety guide. And so it actually lists all of the different social media platforms and talks about how to protect your information and report harmful content on those particular platforms. So I think that's a really handy tool for people to know about as well.   Lyssa Rome Those seem very useful. Thank you for bringing those to us. And again, we'll link to those resources. I am so glad to have had this chance to talk with you and I'm really looking forward to all of the exciting things that you're working on now. Dr. Liss Brunner, thanks so much for being a guest on this podcast.   Dr. Liss Brunner  Thank you so much for having me, Lyssa. It's been wonderful. I could talk about this stuff forever and a day. So I'm really pleased that we've had this opportunity. Thank you.   Lyssa Rome  And thanks also to our listeners. For the references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access. For Aphasia Access Conversations, I'm Lyssa Rome.   Additional Resources Contact Liss: melissa.brunner@sydney.edu.au eSafety Commissioner: www.esafety.gov.au/ eSafety Guide to Staying Safe Online: www.esafety.gov.au/kids/I-want-hel…ing-safe-online Cyberability - free training on how to stay scam safe after brain injury: www.cyberability.org.au/ social-ABI-lity - free training on how to use social media after brain injury: abi-communication-lab.sydney.edu.au/courses…I-lity/ Brunner, M., Hemsley, B., Togher, L., Dann, S., & Palmer, S. (2021). Social media and people with traumatic brain injury: a metasynthesis of research informing a framework for rehabilitation clinical practice, policy, and training. American journal of speech-language pathology, 30(1), 19-33. https://doi.org/10.1044/2020_AJSLP-20-00211 *Email Liss for a copy* Brunner M, Rietdijk R, Summers K, Southwell K, Avramovic P, Power E, Rushworth N, Togher L (2024) ‘It gives you encouragement because you're not alone': A pilot study of a multi-component social media skills intervention for people with acquired brain injury. (Invited paper for a Special Issue on SLT/P clinical management of traumatic brain injury across the lifespan), 59, 543–558. https://doi.org/10.1111/1460-6984.12806 Brunner M, Rietdijk R, Avramovic P, Power E, Miao M, Rushworth N, MacLean L, Brookes AM, Togher L (2023). Developing social-ABI-lity: an online course to support safe use of social media for connection after acquired brain injury. AJSLP (Invited paper for a Special Issue of Select Papers from the International Cognitive-Communication Disorders Conference), 32(2S), 924-940. https://doi.org/10.1044/2022_AJSLP-22-00099 Brunner M, Rietdijk R, Togher L (2022). Training resources targeting social media skills: A scoping review to inform rehabilitation for people who have an acquired brain injury. JMIR, 24(4), e35595. https://www.jmir.org/2022/4/e35595/ Brunner M, Bryant L, Turnbull H, Hemsley B (2022). Developing and sustaining a social media ecosystem in speech-language pathology: Using innovative qualitative methods to visualise and cultivate a social media garden. IJSLP (Special Issue on New perspectives, insights, and practices: Qualitative research innovations in Speech-Language Pathology), 24 (5), 558-569. https://doi.org/10.1080/17549507.2022.2069860 *Email Liss for a copy* Ylvisaker, M., & Feeney, T. (2000). Reflections on Dobermanns, poodles, and social rehabilitation for difficult-to-serve individuals with traumatic brain injury. Aphasiology, 14(4), 407–431. https://doi.org/10.1080/026870300401432   University of Sydney profile Acquired Brain Injury Communication Lab website Twitter/X @LissBEE_CPSP Mastodon @LissBEE LinkedIn Instagram Facebook

Welcome to this Aphasia Access Aphasia Conversations Podcast, a series of conversations about aphasia, the LPAA model, and aphasia programs that follow this model. My name is Janet Patterson. I am a Research Speech-Language Pathologist at the VA Northern California Healthcare System in Martinez, California, and a member of the Aphasia Access Conversations Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their efforts in engaging with persons with aphasia and their families through a variety of educational materials and resources. I am the host for our episode that will feature Lauren Bislick, in which you will hear about friendship, yoga, mental imagery and aphasia. These Show Notes accompany the conversation with Lauren but are not a verbatim transcript.   In today's episode you will hear about: the value of friendship in our lives and Mission SPEAK, ideas for creating an accessible yoga program for person with aphasia, and the value of mental imagery.  Dr. Janet Patterson: Welcome to this edition of Aphasia Access Conversations, a series of conversations about the LPAA model and aphasia programs that follow this model. My name is Janet Patterson, and I'm a research speech language pathologist at the VA Northern California Healthcare System in Martinez, California. Today I am delighted to be speaking with Dr. Lauren Bislick, a newly minted Associate Professor at the University of Central Florida, in the School of Communication Sciences and Disorders. Lauren is also the director of the UCF Aphasia House, and the director of the Aphasia and Related Conditions Research Lab. Across her work efforts, Lauren investigates the diagnosis and treatment of acquired apraxia of speech and aphasia, the value of mindful body practices such as yoga, friendship development, and interprofessional education and practice.    In 2023, Lauren was named a Distinguished Scholar USA by the Tavistock Trust for Aphasia UK. The Tavistock Trust aims to help improve the quality of life for those with aphasia, their families and care partners by addressing research capacity related to quality-of-life issues in aphasia. Congratulations on receiving this honor, Lauren. Aphasia Access collaborates with the Tavistock Trust for Aphasia in selecting the awardees and is pleased to have the opportunity to discuss their work and the influence of the Tavistock award.    Welcome Lauren, to Aphasia Access Conversations.   Dr. Lauren Bislick: Thank you, Janet, and thank you Aphasia Access for having me. Also thank you to the Tavistock Trust for the review team for nominating me and for selecting me. I'm truly very honored to be a recipient of this award.   Janet: It's a well-deserved award. Lauren, as we said, you were named a Tavistock Trust, Distinguished Scholar USA for 2023. You join a talented and dedicated group of individuals in this award. How does receiving the Tavistock award influence your clinical and research efforts in aphasia?    Lauren: First, I'll say again, I was truly honored to receive this award and was definitely surprised. The nomination announcement occurred at the Clinical Aphasiology Conference, and they didn't give us a heads up that the announcement was coming through, so I was very surprised. I think in terms of how this has influenced my clinical and research efforts as an academic, and as a clinician. I think a lot of people can relate to that feeling of imposter syndrome, and so receiving this award has helped me push that feeling to the side a little bit in some aspects of my work and of what I do. It's also allowed me to feel very proud about what I've been able to do. but more so through my collaborations and my students and the community that we have at UCF. It's allowed me to grow connection. Since receiving this award, people have reached out to me to talk about collaboration or wanting my help in terms of more of a consultant role. It's allowed myself and my lab to reach a larger group of people and has definitely supported that emphasis on quality-of-life work, which is not necessarily the training that I focused on when I was in my doctoral program. That's been something that I've come into in my time as an assistant faculty member or a junior researcher. It feels very good to be acknowledged for that and for these lines of work being supported.   Janet: And well deserved, for certain. Lauren, I would like to begin by asking you about your recent work investigating the role of friendship for persons with aphasia. I believe in the power of friendship and community during joyful times, and also during sad times in one's life. One of the unfortunate consequences of aphasia can be the loss or diminishing of friendships, or the communication skills important to developing and sustaining friendship and community. How did you become interested in this aspect of aphasia? And what conclusions have you drawn from your research?   Lauren: Thank you for this question. One of the things that I talk about frequently in both my aphasia course and the motor speech disorders for our graduate students, is how individuals with acquired communication disorders, whether it be linguistic, or motor based, is that their social circles get smaller, and we know that's a problem in life. Friendship is an essential component of quality of life, and as you said, whether celebrating the good things or you're going through a hard time you need those friends. This is an important area that I believe gets overlooked although now we have a couple of different groups looking at friendship and aphasia, which is wonderful. I actually have to thank Dr. Elizabeth Brookshire Madden for pulling me into this work. She is at Florida State University, and I like to call us aphasia sisters. We went through the same doctoral program, and she was one year behind me. We became very close during that time, both as friends, but also in the work that we do. [Aphasia Access note: Elizabeth Madden was selected as a Tavistock Distinguished Scholar USA in 2024.]   One of the other faculty members at Florida State University, Michelle Therrien, does work on friendship, but in the pediatric world. This grew out of conversations between Liz and Michelle, where they started talking about how we can look at friendship and aphasia. Clearly, we all believe it's an issue, but it hasn't been well investigated. That was shortly before the team Project Bridge Conference, which is really what helped initiate this kind of area of research for our group. Liz and I met at the 2018 Project Bridge conference and started facilitating a friendship group; she took the lead in this area. I got pulled to the yoga group, which we'll talk about later. Liz talked with a number of care partners of individuals with aphasia, and started discussing their social groups, and then friendship. Leaving that conference, she had some really great ideas about where to go next and what was needed in the area of friendship. From there grew her team of myself, Michelle Therrien, Sarah Wallace, at the University of Pittsburgh and Rachel Albritton, who's also at FSU.    In our first study, we did a survey with SLPs trying to ask if SLPs see friendship as being an issue? You know, is this us projecting, or is this something that clinical speech-language pathologists are seeing as an issue? If so, are we addressing it in the field? What that initial study showed us was that, yes, SLPs report that their clients are experiencing loss or difficulty with friendships. They also reported that there are barriers, there aren't assessments that ask about friendships, and there aren't interventions. So, while they see this as an important thing, and something that SLPs believe that this was within our scope of practice, they need a little more guidance as to how to support people with aphasia in terms of maintaining friendships, and then also developing friendships.    Following that study, we then spoke to people with aphasia and also spoke to caregivers of people with aphasia to get their perspectives and their lived experiences. What happens to friendship, immediately after a stroke? In that acute phase? What happens to friendship during that chronic phase? And then where are they now? What we found through these conversations is that many individuals reported that their friendships had changed after they acquired aphasia, both in the acute phase and the chronic stages. The same could be said for caregivers as they are navigating this world as caregivers. They are experiencing changes in their friendships. With aphasia being a chronic condition, this is something that people are living with for the rest of their lives. Friends can kind of be there in the beginning, and that acute care phase where they send messages or come by to say hello and show their support. As they realize that the communication impairment isn't going away, they don't know what to do and may get a little uncomfortable, feeling bad that they don't understand their friend with aphasia, or they don't know how to support them in their communication, or this problem isn't disappearing. This is me projecting, but I believe that's what's happening and what we're seeing is that people with aphasia, and their caregivers are reporting this loss. They also are reporting gaining new friends as they become ingrained in social groups. They meet other people with aphasia or care partners of other individuals with aphasia and develop friendships that way. They are also reporting smaller social groups, smaller groups of friends from their pre-aphasia life, dwindling for a lot of people. We think from our research what we're finding is that we really need interventions that target friendship maintenance and development. Some of that may be as simple as providing education, inviting friends into the therapy room. We do this with care partners, we can also offer this to friends to see how we are interacting with your loved one with aphasia. We can provide key tools to support communication; I really think a big piece of it is education. We've got to find the best way to navigate this in the clinical world. I think that's the next step not only for our group, but for the other groups that are looking at Friendship.    Janet: Lauren, you make some very good points in those comments. I wonder, do you have some brief thoughts or very specific ideas about how as clinicians, we can act in ways to optimize the friendship activities of our clients, or their care partners, recognizing though, that everyone has different styles and needs for friendship? It's like you say, we should not be projecting our desires and our styles and our needs onto our patients, but rather listen to them and figure out what their needs and desires are?   Lauren: Number one, right there, is listening to our clients, listening to their loved ones, what do they need? As I mentioned before, I think education is a really big piece of this. That may mean just having some materials as a speech-language pathologist that you can send home with family members that they can give to friends, right, so not just materials for that care partner, or the person with aphasia, but materials for friends. Here's something that will educate you a little bit on what aphasia is, there are some ways that you can successfully communicate with your friend with aphasia, here's what to expect. I think some of it is people just don't understand. They don't live in our world clinically, working with people with aphasia, working with people with communication disorders. For some, it's that they've never been exposed to, and so there's a discomfort with the unknown. I think education is huge. Also inviting friends. If you're going to have a counseling session with a care partner, and a person with aphasia, and their loved one, would they like friends to be at that table? Ask them. They may not, they may want it just for them and to be quiet and personal, but they may have some really close friends that they know they're going to lean on and want to be there. Opening the opportunity to invite other individuals and also inviting friends to support groups. Bringing friends to support groups, I think, would also be a space where friends then can observe interactions among people with aphasia, as well as their loved ones, and can have an opportunity to interact with other people with aphasia. So those are a few things that I think we can do right now. There are through many of the different resources like ARC [Aphasia Recovery Connection], for example, there are opportunities for education, communication partner training, and those are things that we can also plug friends into   Janet: Those are some very good ideas, Lauren, very good ideas. You have also worked to address the isolation felt by people with aphasia, and severe acquired communication impairment through your lab's Mission SPEAK program. Can you tell us more about this program, please?   Lauren: Absolutely. Mission SPEAK stands for Mission to Promote Socialization, Participation, Engagement, Advocacy and Kindness, for people with severe acquired communication disorders. This grew out of a lack of participation among some of our community members who had more severe communication impairments. They felt that they were just unable to be successful in a group setting, and tried some of the aphasia support groups, but didn't feel like they were being heard, or that they had equal opportunity, or were just frustrated by it. It didn't feel right for them. And so, I started thinking about, well, how can we provide an opportunity for individuals who feel this way, or maybe they're just more introverted which could be another piece to why they don't want that large group. How can we provide opportunities where they're still getting to practice communication in a safe space, develop friendships, and just be able to interact to combat those feelings of isolation that people with aphasia and other acquired communication disorders report. Mission SPEAK is a program where the students in my lab, both undergraduate and graduate students, some are CSD, some pre-med, some in their med programs, where they have the opportunity to meet with an individual with aphasia or another acquired communication disorder on a weekly basis to have a conversation. It's all via Zoom. These meetings can take any shape that the person with aphasia or the communication impairment and the student want to go with it. We have some individuals that meet to actually practice what they're learning in therapy and so the clinician has connected with my students to say ‘Hey, can you go over this homework with them or allow them opportunities to practice' and sometimes the clinician will hop on to Zoom as well. We also have opportunities such as one of my students and one of our friends with aphasia are reading a book together and so they do shared reading. In another pair we have a young man who really just needs interaction, so he meets with two different students, and they just have conversations over shared interests. Sometimes his mom is there to help support communication. We see as time goes on that as the individuals are getting more comfortable with each other, and the students are getting more comfortable, there are emerging areas where there are overlapping interests, or maybe the student is learning from the person with aphasia say, about sports, for example. We have one group where our friend with aphasia is a huge sports fanatic. He was meeting with two young women in our undergraduate program who knew very little about some of these sports and so he's taught them. It's really fun. Again, they meet at least once a week. We have one individual that at one point was meeting with three separate students three times a week. The friendships that form from these smaller groups are something special. For some of these folks it's intergenerational, for others they are peers. What you see is that the students don't want to give up this opportunity. I have some students who have been meeting with their friend with aphasia for over two years now. They've gone from their undergraduate programs through their graduate programs, and they've just developed a friendship and don't want to let go of it, which I think is phenomenal. This is something that I would like to see open up as chapters across different universities. Students want these interactions so badly and there are so many people with acquired communication disorders that need an outlet, and that would benefit from this safe space to work on their skills to just have fun. It really can be whatever they want it to be.   Janet: What a great idea. You've got my brain spinning. And I've been making notes about some clients I've been thinking about who would benefit from exactly what you're saying, just the opportunity to have an interaction and conversation. Wonderful.    Lauren, another avenue that you've been interested in is the practice of mindfulness, especially yoga practice. How do you see yoga practice supporting the LPAA philosophy of living well, with aphasia?   Lauren: Love this question. I have to backpedal just a little bit to answer it to say, I was never a yogi until I started my doctoral program. If you know me, I'm 5'11”. I'm tall and I grew up playing all the tall-person sports and pretty much was of the mindset that if you're not huffing and puffing and soaked in sweat, then it wasn't exercise or it wasn't beneficial. Well, I was wrong. In my doctoral program, I was dealing with imposter syndrome. I'm also a first-generation college student. Being at that level, and with all the different hurdles that a doctoral program offers, I was really feeling that imposter syndrome and anxiety that surrounds it. Somebody suggested starting yoga, and it's what got me out of bed in the morning, and really grounded me to face my day and feel as confident as I could in my skin during that time. After doing it for a few years, I just had this aha moment of, wow, I would love to bring this to the aphasia community. It's helped me with my anxieties and my areas of self-doubt and has just allowed me to also be present. I can only imagine for some folks with aphasia the anxiety that they may have surrounding communication, or just feeling okay with where they are in this part of their journey and that acceptance piece. Then I pushed it off. I said, well, I can't do that now I have to wait until I get tenure, I've got to focus on this very systematic treatment development program. I can't do more things.    Then in 2019 when I was an assistant professor, just my first year at UCF, I went to Project Bridge again thank you, Jackie Hinkley. While I was there, there was a small group that consisted of Dr. Amy Dietz and her friend with aphasia, Terry, who were at a table, and they were promoting yoga for aphasia. I was walking around, and I saw that table and I thought it was amazing. I went over there to have a conversation with them. Amy Dietz had just finished a small pilot project looking at methodology of how we make yoga accessible. And so I talked with Amy and I talked with her friend with aphasia, Terry, about their experience, and then more people started coming to that table; Susan Duncan, who is aphasiologist and a speech-language pathologist and a yoga practitioner, and then also a person with aphasia, Chase Rushlow and his mom, Deanna Rushlow. All the whole rest of that conference, we hung together, and started planning out the trajectory of how to bring accessible yoga to people with aphasia and to the aphasia community. Chase had experienced yoga, post stroke, and as a person living with aphasia with his mom, they shared their story about how it brought them together, and how it grounded him, how he found Zen. It was so fruitful being able to have these conversations with people with aphasia, and also their care partners, and them telling us what yoga has done for them. Not only did we all have our own experiences with yoga from myself, Amy and Susan, but then we also were getting this feedback from the rights holders, right from our patient stakeholders. And so this group moved forward.    Sorry, I had to backpedal there a little bit. Since that time, I'm so proud of what we have done as a team and what has unfolded. I was very fortunate to meet a yoga therapist named Karen Cornelius here in the Orlando area and together, we've been able to build an accessible adapted virtual yoga program for people with aphasia. It started as kind of this feasibility study with our own aphasia community group here in Orlando, getting feedback from them, figuring out how to make the language accessible, what visuals are helpful? What do people with aphasia want from a yoga practice, were there things that they liked, or things that they didn't like. We've had this really long but very informative process of delivering yoga from a yoga therapy perspective, caring experience, and then figuring out what to spend more time on and how to present things verbally and visually. Now I feel like we have this ongoing, strong, adapted yoga community that we're able to offer. We offer it every Friday at 11am. And we have participants from all over the US. We still have a strong group from Florida, from the Orlando area, but we've got people that participate from California, we've got folks from in the middle of the state, we've got people from Kentucky, we've got people from Pittsburgh, we have people from up north. And we also have a participant from Bermuda. It's amazing to see all of these individuals who would have never met each other otherwise come together so that they can have a yoga practice. For some of these folks, they participated in yoga before their stroke, and then had a really hard time getting back into it afterwards because of the language impairment, the language barrier really. Yoga is a very language heavy practice. The modifications that we've made have been really helpful in making it accessible. But then we've also brought in others that never looked at yoga before and experienced it for the first time and have heard their report that they reap the benefits of it. What we're seeing in both our qualitative research, and also in our quantitative research is that people are reporting reduced stress after participating in at least eight weeks of yoga, better sleep quality, and increased resilience. Some have discussed better pain management, so they feel like their pain, although it's not gone away, that they are able to go about their daily life without pain taking as much in terms of resources from them as it did prior. The biggest thing to I mean that sticks out is people are talking about self-acceptance. Yoga has helped them accept where they are right now in their journey. The last thing I'll say along these lines is there is something so powerful about having individuals come together in this group and there's conversation that happens at the beginning and at the end, just like you would if you walked into a yoga studio. I think it's that they're all working on a common goal, in this hour, and very little of what's being done is focused on communication, the effort is taken away. They're really just sharing a space with each other, enjoying that space, doing something that's making them feel good. And they're not having to think about their impairment. There's something really special with this group.    This work has now been funded by Orlando Health, which is our one of our big hospitals in the area. We're working with an interprofessional team and actually bringing yoga therapy into the inpatient rehabilitation program. This has been really neat, because Karen, the yoga therapist, and I are working with an interdisciplinary team of speech-language pathologists, physical therapists, occupational therapists, and recreational therapists. We'll have a group of individuals and all of these different professionals in the same room, and we're getting feedback from the professionals about what they like, what's facilitating this program for them, and what are the barriers. At the end, they will be the ones running this program, and they are very committed to keeping it up and running. We're also of course, getting the feedback from the people with aphasia and other brain injury survivors in this group, as well as their caregivers that are coming in and participating. I think now I can say I've done a good chunk of research in my life, and this area is the most fun and the least amount of work. Everything has happened organically. There has not been a moment where it feels like this really is work, or I don't want to do this. It's all just unfolded so beautifully. I feel so fortunate to be a part of this, I'm so thankful that Project Bridge pushed me into this, in a sense, when I thought I had to put it off for years and years to come. It's been a lot of fun. For our listeners, we have an ongoing yoga program on Friday mornings at 11 am EST, that is run by a yoga therapist who is amazing, and well versed in aphasia. I welcome people to join us.   Janet: I am moved by your story, Lauren, both your individual journey through your doctoral program and finding yoga to help your own self, and then taking that into the aphasia community. Several times you've used the phrase, ‘your journey through life' or ‘your journey of life'. And isn't that true? We're all on a journey, and it changes year to year, or decade to decade, if you will. It's exciting to know that you're finding a way to connect people with aphasia to a larger community that focuses on yoga, for example, rather than focusing on the impairment that they have living with their aphasia. Thank you for that. It sounds like it's a great success, and I hope it will continue to be so good for you.   Lauren: Thank you.   Janet: Lauren, another area of investigation, you're examining the benefit of motor imagery and home practice, for enhancing treatment outcomes in persons with apraxia of speech. This is a little bit different from yoga and mindfulness. But yet at the same time, it's about what people can do in their own selves, I think to improve their communications and improve their interactions with others. Will you describe this work and your current findings, please?    Lauren: Absolutely. And you really did hit the nail on the head because it does overlap a lot. It's different in that we are working on the impairment here, but the motor imagery piece grew out of what I was seeing with yoga. Many of our participants have hemiparesis, for example, or they might have apraxia of speech or more severe aphasia. When they are unable to produce a certain movement, or unable to say a certain mantra, we tell them just to visualize. If you can't move that arm that is fine, or if you can't move it to the extent that you want to that is okay, just imagine that arm moving. Just imagine or hear yourself saying this affirmation.    Based on what we were doing with the yoga I started digging a little deeper into the research on motor imagery and mental imagery, and that's where this idea arose. Surprisingly, there hasn't been a whole lot of work using motor imagery for rehabilitation of apraxia of speech. There's been a little bit of work in the area of stuttering, and motor imagery is used significantly in sports medicine, athletic training for professional sports, and musical training, and also rehabilitation of limb and gait, but really very little about speech. And so, I found a hole. My thought was maybe this motor imagery piece is a start, it's something that people can do at home without much support, and maybe it will impact their performance, either that day or in a therapy session a few days later. I wrote a grant and it was funded through the National Institutes of Health. The grant focused on looking at the impact that motor imagery has when combined with behavioral speech treatment. My thought moving forward was that I got my Ph.D. not only because I wanted to know more and wanted to create treatment programs, but I wanted to prove to insurance that healing the brain post stroke, or rehabilitation of speech and language post stroke, is not the same as healing a broken bone. It takes a lot more time. It's ongoing. In my time, I have not seen a change in insurance. In fact, I think it's gotten worse. So my thought into this is we've got to give clinicians and people with communication impairments the opportunity to work more from home. What can they do on their own to bolster the impact of those few treatment settings that they actually are getting, if they are treatment seeking individuals. The idea is, the hope is, that through motor imagery, what we're doing is priming the neural network. Patients can go home with targeted stimuli that they're working on, for example, and just imagine themselves saying it accurately, thinking about how the articulators are moving, visualizing themselves being successful. Hopefully, we're priming those networks. Then when they go into that treatment session, those networks are primed and perhaps we see a boost in performance. The hope, the long-term goal, of this is to build a home practice program that can be accessible to people in the comfort of their homes, easily and free of charge. The speech-language pathologist can also interface with the program to put stimuli into it, for example, so that it can support what they're working on in therapy. We're still in the early phases, but we just completed our first qualitative interview after somebody has completed the whole program, and they really liked it. I thought people were going to be bored with motor imagery because we're not yet allowing them to say anything. In the motor imagery piece, we really want to focus on what does imagery add, but they really enjoyed it. Our first participant, what he said was that at first he didn't like it, he thought it was weird. After we went through practice for a few weeks, he would come into the therapy session and we would do a probe and afterwards if I commented that he did really well on that today, or in the treatment session itself, or if I was seeing a lot of success with certain targets, he would say ‘the homework, the homework'. My thought was that he felt like the homework is helping. He was encouraging and felt like it was helping. We've only run a few people through, so right now, it's preliminary findings, but what I'm seeing is a benefit when they are going home and having this opportunity to practice. Even though it's not verbal practice, it's motor imagery, I'm seeing a change when they come into the session. The study itself is funded for three years, and we have the opportunity to provide free therapy for 18 individuals with co-occurring apraxia of speech and aphasia. I'm excited to see what that group data look like, but right now, and with just the conversations that we're having with the folks that are coming through, I feel very optimistic about this program. It will definitely need to grow, I don't want it to be only motor imagery forever. It's a good first step.   Janet: That is very exciting to hear. I look forward to reading the results as you have more and more individuals with apraxia of speech move through your program.   Lauren, as we draw this interview to a close, I wonder if you have some lessons learned that you would share with our listeners, as well as some Monday morning practices, that is actions that we can take on Monday morning to improve our interactions with persons with the aphasia or apraxia of speech.    Lauren: So I think first, and this is reflecting on what I do, I know many individuals out there, whether you are clinically working with the population, or you're doing research, you're in an area where you are giving. We are giving to support a community. The same thing that I tell our caregivers is to do something for you first, that will allow you to continue to give to others. What is something can you identify, something every day. When there's a little bit of something that you can do for yourself that just fuels you to be the best clinician, the best researcher, the best partner, parent, the many hats that people wear, to your community. That may look different for everyone. For some people, maybe it is meditation, for others maybe it's yoga, maybe it's running, maybe it's baking, everybody has their thing, but identify that certain something that gives you the energy and maybe the groundedness to serve your community.    One thing we've touched on, and if you're listening to this podcast, you know this, but listen to our friends with aphasia. Their perspectives give us so much more than we could ever pretend to know. I've learned so much from my friends with aphasia, even moving forward and in my research - thinking that I know what people want, talk to them, and then the realization this actually isn't an issue, this other thing is. Seek better understanding, otherwise, we're going up the wrong ladder and putting our efforts in the wrong area.    Building community through shared interests, that's what I'm trying to do a bit, and also incorporate student involvement; use your resources. With Mission SPEAK we really are trying to build community through shared interests. It's really neat to see how this unfolds. Even when you have a person with a communication impairment or a person with aphasia, who is maybe 30 years older than the student that they're meeting with, there are shared interests. And it's so neat, what they learn from each other and how this partnership grows, and this friendship grows. Then you also have peers, folks who have acquired communication impairments that are close in age with our students, and that takes on a life of its own as well. Try to match people up based on shared interests, or at least having someone that is really eager to learn. Also being open. Building community through shared interests supports what we've done with yoga. Here are folks that are finding peace and community and enjoying this activity together. It could be anything doesn't have to be yoga.   One other is interdisciplinary practices. When we're thinking about our friends with aphasia, not just thinking about the aphasia or stroke, when we're working with our more acute care friends, or those that are still on that rehabilitation trajectory. Stroke Survivors are dealing with more than aphasia, and I think sometimes we can lose sight of that. Making sure that there is an interdisciplinary team or you're offering interdisciplinary supports, asking what else do they need. I find that I've learned so much from my colleagues in physical therapy and occupational therapy. I work closely with an assistive technology professional who has just unlocked for me the world of supports that are out there that help people live well with aphasia, and also with hemiparesis. Supports such as for cooking with hemiparesis, supports for a computer adapted need, supports many things, such as positioning, seating, getting out there and playing sports, again, in an adaptive community. There are so many things that have happened, I think, over the last decade to make things more accessible for people post stroke. Educate yourself on what's out there.   Janet: Those are great ideas. Thank you so very much. And thank you, Lauren, again for taking the time to speak with me today about the Tavistock Distinguished Scholar Award, and about your work in aphasia.   Lauren: Thank you very much for having me.   Janet: You are so welcome.    I would also like to thank our listeners for supporting Aphasia Access Conversations by listening to our podcasts. For references and resources mentioned in today's show, please see our show notes. They are available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, please email us at info@aphasiaaccess.org. For Aphasia Access Conversations, I am Janet Patterson, and thank you again for your ongoing support of Aphasia Access.   Lauren, thank you for being with me today and congratulations on being named a Tavistock Distinguished Scholar on behalf of Aphasia Access and the Tavistock Trust. I look forward to learning about your future accomplishments, and seeing how you help people with aphasia and apraxia of speech on their journey of life. References   Madden, E. B., Therrien, M., Bislick, L., Wallace, S. E., Goff-Albritton, R., Vilfort-Garces, A., Constantino, C. & Graven, L. (2023). Caregiving and friendship: Perspectives from care partners of people with aphasia. Topics in Language Disorders, 43(1), 57-75. https://doi.org/10.1097/TLD.0000000000000301    Therrien, M.C., Madden, E.B., Bislick, L. & Wallace, S.E. (2021). Aphasia and friendship: The role and perspectives of Speech-Language Pathologists. American Journal of Speech-Language Pathology, 30(5), 2228-2240. https://doi.org/10.1044/2021_AJSLP-20-00370  Resources   Aphasia Recovery Connection (ARC)        https://aphasiarecoveryconnection.org  Aphasia and Related Conditions Research Lab and Mission SPEAK https://healthprofessions.ucf.edu/communication-sciences-disorders/aphasia-and-related-conditions-research-lab/  Project Bridge     Project Bridge - Research Community in Communication Disorders

Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, and Thursday Night Poets.  I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature three voices, one of a partner of an individual with primary progressive aphasia, CeCelia Zorn, who also happens to be a former professor in the department of nursing at the University of Wisconsin – Eau Claire; along with Tania Riske, an SLP at the Mayo Clinic Health Systems Eau Claire, and Nancy Petersen, a social worker with expertise in grief and bereavement from Ability KC in Kansas City. Each of them have both professional and personal experience and expertise with grief and loss. June is aphasia awareness month, so we wanted to take this opportunity to share the lived experience directly. Today's episode will address grief, death, and loss: leaning into a much-needed discussion. Biosketch: Our first guest, CeCelia Zorn, Ph.D., met her husband Wayne in high school in rural northeastern Wisconsin. Wayne died from the consequences of primary progressive aphasia last August, 2023. Since that time, CeCelia has continued her work as an advocate for families living with primary progressive aphasia and more recently about grief, death, and loss as a care partner. Cecelia brings multiple perspectives to our conversation about grief, death, and loss. She is a registered nurse and a lifelong writer. She has been an award-winning university professor for 32 years. CeCelia reads voraciously, plays pickleball, and is relearning how to play the flute – taking individual lessons, playing in community bands and auditing university music history class. She volunteers at the local free clinic and is an active member of the Board of Directors for Wayne's former memory choir. On a daily basis, CeCelia strives for a life enriched by kindness, joy, perseverance, curiosity, patience, and collaboration. But she will be the first to tell you, “some days are easy but some days you just crash. Yet everyday it counts because I remind myself, life isn't waiting for the storm to pass it's about learning to dance in the rain.”   Tania Riske, MS, CCC-SLP is a speech-language pathologist at Mayo Health Systems – Eau Claire. She initially entered the speech language pathology field through her volunteer work with the Chippewa Valley Aphasia Group and graduated from the University of Wisconsin – Eau Claire Communication Sciences and Disorders program. Currently, she serves as an adjunct faculty member at UW Eau Claire, teaching undergraduate courses such as anatomy and physiology of the speech and hearing mechanism. Tania continues to enjoy treating patients with aphasia and their families within the LPAA Paradigm. Developing plans of care, counseling individuals' unique lifestyles, goals, interests, and priorities. Tania is an avid trail runner and equestrian. CeCelia, Wayne, and Tania were my guests for Episode 49 – Primary Progressive Aphasia: A conversation with Wayne Zorn, CeCelia Zorn, and Tania Riske. Nancy Petersen, MSW. Nancy grew up just outside Tulsa, OK and has an undergraduate degree in Speech Language Pathology from Oklahoma State University. She received a Master of Social Work from Jane Addams School of Social Work at the University of Illinois at Chicago, where she worked in urban hospitals and neighborhoods. Nancy is currently a Community Liaison for Ability KC, assisting patients as they transition from acute care to an intensive outpatient complex neuro-trauma rehab program. Her job also involves providing conferences and education to the medical and general Kansas City community. In her 30 years in the helping professions, she has learned much working in a variety of areas including nursing homes, hospice care, a suicide hotline, senior home care and case coordination. She has served on both the local and national Board of the Funeral Consumers Alliance providing education and advocacy relating to consumer protections in the funeral industry. Nancy is also involved with the Children's Mercy Hospital Rare Disease Patient Family Advisory Council, as well as the Ethical, Legal, and Social Integration (ELSI) Committee for the CMH Genome Project. Nancy has been married to Jimmy for 24 years and has an 18-year-old son with a rare disease, 21-year-old daughter, a cat, a dog and many wonderful friends. Take aways: Avoidance. We avoid difficult conversations and miss opportunities to engage our clients and their families in important discussions about loss and grief. Culture. There is a culture in the US of avoiding or sugar coating conversations about grief, death, and loss; using euphemisms to describe death. Prolonging. We (as a society) are often guilty of prolonging life at any consequence and failing to consider quality of life. Loss. Loss and grief do not exclusively apply to death and bereavement. They apply, as we know, to identity and loss of a whole host of pieces of our lives and identity, particularly following stroke and aphasia. PPA and degenerative loss. This loss is something we know is going to happen and open conversations about loss may help to open the door to bigger conversations about death and dying.   Interview Transcript: Jerry Hoepner: let's just kind of settle into a conversation. I really appreciate having the 3 of you here together. I know you all fairly well, but having the lens of a speech language pathologist, the lens of a social worker, and the lens of someone with the lived experience themselves is just a great way to have a conversation about a complicated and challenging conversation sometimes one that maybe people want to avoid. So, I'm just excited to talk to all of you. I'm going to open it up on the front end with a really broad question. I want to be careful, you know. I don't want to make you relive moments and things like that, but I also know that you are here because you want to be advocates for teaching and conversations about death and dying and grieving, and all of those processes. So, wondering if the 3 of you are willing to share a little bit about your personal background and experiences with grief. CeCelia, go ahead. CeCelia: Yup, yeah, I happy to start. Thanks, Jerry, for kind of pulling us all together. I really appreciate the opportunity to be part of the conversation. The thing that comes to mind when you pose that question is my family history around dying and grief and death and I'm so fortunate to have had that family experience. I think it was sort of a balance between the emotional side of dying and death, and the practical side of dying and death, and our family held both of those at the same time. It wasn't just the emotion, and it wasn't just the practical aspects, but it was sort of, I don't know, running down a river of white water with one foot in each canoe, and I remember specifically, at my dad's death bed. There were 7 of us kids, and we of course, mourned his passing and were extremely emotional about that, and stayed with him 24, 7 for 3 weeks, etc. Etc. And but at the same time we were talking about. Should we have spaghetti or ham at his funeral luncheon? So, sort of the practical aspects of how is this all gonna come together in a few weeks when we knew the funeral was coming? So, for me, that's a strength that has carried throughout my life. And I I just am so appreciative of that. And I can only speak to my experience. Perhaps other families have had similar experiences, or one versus the other, or neither. But I just wanted to sort of throw that out there. That sort of ability to handle both things sort of in the same at the same time, has been a source of strength for me. Jerry Hoepner: Wow! Thanks for sharing that, CeCelia. And I'm not sure that that is the experience of a lot of people that ability to do that. I want to take a step back, and mention something I should have mentioned. CeCelia. You kind of wear a couple of different hats, so you were a nursing faculty member for many, many years you have that holistic care, nursing perspective on grief and death as well, and then you also wear that lived experience hat as well. If I can use that metaphor in dealing with your husband. Wayne's death related to primary progressive aphasia. So just so. Our audience is understanding those perspectives. I think that's important. And to go back to what you just said, everyone has a different experience, and I'm not sure that everyone does process those things in parallel. Jerry Hoepner: Nancy, I'll invite you to share a little bit next. Nancy Petersen: Well, I'd be happy to. So, background is I have a master's in social work from Jane Adams at University of Illinois, at Chicago my experiences over the time figuring out what I wanted to be when I grew up, and what I ended up doing where I worked at a suicide hotline. For 3 years. I then worked in hospice for a number of years, including pediatric hospice while kind of in my life. At the same time my father died when I was 20, very unexpectedly at 52. I have worked in kind of every different version of the helping profession and nursing homes and pediatric settings and am currently working in complex neuro trauma rehab I was on the National Board for the funeral Consumers alliance when all of a sudden, my son was diagnosed with a rare progressive, neurodegenerative disease, 6 years ago and we're dealing with what that means and what that looks like. What that does to a 13-year-old when they get diagnosed with something that will limit his life. And so have kind of truly become aware of the difference between someone who talks about life and things that people need to know and what how things should be in an academic way, and truly have learned what it feels like to live that you know, your parents are important, but kids are different. They hit different. And when you kind of start living that deeply, what I have learned becomes a lot closer to home, it just hits really close to home. So that's kind of my background. I did a lot of I wrote a section for Jerry's book about you know, one of the textbooks about death and dying, and what I believe about it. I'm kind of curious having not read it for a while. How my! Just how the changes in what has happened in my life. And Clark was sick then. So, it's not brand new, but even then kind of the differences of what happens over time when you're living kind of a situation like that. And I just looked at something. I wrote a while back a presentation called Death as a 5-letter word and it has some interesting things in it as well. So, I think the topic of death has no answers. And the talk of bereavement has no answers, and very often people who are bereave, who are bereaved, or who are getting ready to, who are bereaving before the death, want there to be. And I think that's one of the biggest, although obvious. When you stop and think about it, that's one of the biggest issues that you're going to run into families is they want an answer to make it better. And it's very hard to explain to people they have to live it. That's part of the problem, and the issue with grief is that you can't step around it. If you do, you'll find yourself in far worse situation than if you live through it. So, I think for caregivers or those around you. There's a lot more to say about what to do for someone or with someone who's experiencing it. So, I try to look at it from all the different perspectives to see what sometimes nonsense I can spout. That sounds intelligent, because truly it is such an individual, it is so utterly individual. And there aren't right ways and wrong ways. People think there's a good way or a bad way, or they think there's a right way. And what happens is what happens. And the biggest problem is making sure that you know when it's kind of out of hand or when you need external kick assistance. You need to understand how long it lasts. You need to understand what happens in that and that it's okay. So much of what's going to happen that feels difficult or feels odd or feels out of place is normal. And maybe that's our goal is to normalize people's reaction to it is to normalize their own personal journey as not being something. Then you have to compare to anyone else's. Jerry Hoepner: Yeah, that's such an important point. And again, really emphasizes the fact that all 3 of you are experts with multiple lenses. And I guess everyone is at some point in their life. You know you. You bring your personal background to it, your professional background to it, and then your experiences with life and death and grieving, and all of those things. So, really, I mean, I think we're really fortunate to have this conversation with 3 individuals who have such a broad lens, and are able to view death and grieving from multiple lenses like you all are. Yeah, thank you for sharing that. Tania. I'll let you jump in next. If that's okay. Tania Riske: Yeah, that'd be great. Well, as a clinician, I think I really first sort of became interested in and in investing in conversations about grief because I saw a lot of patients who were facing terrible diagnoses and care partners who are trying to figure out how to sort that out and not having the opportunity to do that. Your neurologist was maybe going to be interested in providing analysis and checking in with you every few months, and maybe adjusting your medications. Your primary care provider was keeping an eye on your blood pressure and your cholesterol. And there just really wasn't a person or a provider who was acknowledging that there was going to be partings happening, that this you know, that this might be a diagnosis that was going to lead. Brief or certainly significant life changes. So it wasn't being talked about. It wasn't being supported, and that really started to make me feel like there was a that was a gap that needed to be filled, the conversations that needed to be opened and had and continued, it wasn't just a one and done kind of conversation, using it to be ongoing conversations and support. And as things change, the conversation maybe changes a little bit, and the resources change. So, I became really interested in the role of speech, language, pathologists, and other providers also in supporting brief and just. Incidentally, as this became a bigger part of what I was thinking about and taking up more headspace for me and making me really think about how I was practicing and how it's impacting patients and families. Incidentally, I lost an adult child. So, I have some of my own grief that I'm dealing with as well, and you can hear that coming up me a little bit right now. But it really shapes how I think about grief and how it's impacting families, and what they might need, or what they might want. And when I was hearing Nancy talk about there being no real answers, and gosh! Families want answers so badly and helping them explore through their grief. And what's right for them and supporting that. And when CeCelia talks about that practical versus the emotional standpoint having one foot in each canoe. I don't think that's an experience that a lot of families have. I think that that's such a lovely perspective and strength that you have, CeCelia but I don't think a lot of other families have that. So as a clinician, investing in families and helping them to have those conversations and recognize that there's not right or wrong answers. But the questions are very fair and very valid, and just be able to support that in a way that feels authentic and feels genuine and caring, and not filled with trite comments and superficial responses. And let's move on from this because we've got other things to talk about, I think, is really important. Jerry Hoepner: Yeah, thanks for sharing those perspectives. Tania. And one thing that I want to highlight for this particular podcast is, we're working with individuals with communication impairments who have maybe additional barriers to talking about death and dying. So, I mean beyond the challenges that we have with what that all of us have in everyday conversations about death and dying. That's just an additional layer. From the standpoint of sharing education with them, but also decision making and planning that becomes so much more challenging in that context. Nancy Petersen: Well, and more importantly, it may isolate them even further from those around them who could support them, who were having enough trouble, just having regular conversations with them. And now we need to have a conversation that's frightens them, that they don't know how to do and I will never forget one of my that I just read said that people who are trying to support people need to remember they're not expected to be Yoda like you. You aren't. You don't have to have the answers, and we for some reason think that is such an important thing that if you talk to someone about something difficult. I said. If you know suddenly, if you someone you know, has cancer, you're supposed to be able to talk to them about cancer treatment. I mean, I don't. The people that helped me the most in the most difficult situations in my life have been the ones who said the least and I don't know why that is hard for people to grasp or be okay with. Hmm. I think part of it is that we are really bad at silence in general and we feel like everything has to be filled. And I am one of those people who, when I get anxious, I just talk more so when I'm being silent is a learned skill, and that is something that many of us is skilled. Many of us don't have. Tania Riske: I think you're right on with that, Nancy. It's so hard to be quiet and listen and I think especially many of us who are in clinical or provider fields tend to feel like it is my job and my responsibility to try to fix this or make it better. But that's not true. But, boy, it's that's what we want to do. Nancy Petersen: Right. Even I have put in that situation, and knowing, you know, it's kind of the same thing about having a sick child, I know the right thing to do but I don't. My emotions. I'm not always. I don't always react with my brain. So, you have to have a lot of self-talk to say. Now, remember, you don't have to know everything, and quiet is good, and they know their own answers, and even with a degree in speech, I mean my undergrad in speech, pathology, so I only know enough to be dangerous. But my I mean social work teaches you to let people find their own answers, and it's still so difficult to do in a really serious situation to not want to fix and to not want to help and it's hard to believe that help is less in situations such as serious grief. CeCelia: And maybe it's not necessarily just sort of pure silence, but it might be reframing. Nancy Petersen: Reflection. Yeah, I agree. CeCelia: You know. Help me understand what you're thinking, or help me understand what you're feeling, rather than sort of tolerating the silencing. When this person is done talking. Then I can go on to some real things, but sort of reframing that silence in a new way might be helpful in some situations. Nancy Petersen: Certainly, active listening is/can be good. I mean, it can be very helpful in many situations. What I kept getting was, what can I do? when I was in that situation, all I wanted to say was, if you can't make my dad well, there's nothing you can do, and it almost angered me that people would ask, What can I do? Because there was only one thing I needed done, and nobody could do it. So, you kinda I would much have preferred, and I did prefer my friends, who were very active listeners, or who sat and padded in my leg or my arm, you know, and you also have to kind of figure out. Are they in the middle of the death, like are they? Is the death actively occurring right then, in which case silence might be helpful. But then, when they want to talk about it. When someone wants to really talk which happens inner, you know, it's interspersed in all of that that reflection and active listening and reframing and making sure you understand what they're saying can be, I think, most helpful. Tania Riske: Oftentimes I've really seen my role as inviting the conversation, opening the door and making it a safe space for that conversation. Even if a patient or family isn't ready to have a conversation about grief that either they're experiencing or they're anticipating they may be or they're going to experience in the future. To know that first of all, I'm acknowledging that, and then also really trying to create that safe space with an open door that we can go to that conversation and that this is this is an okay place to start thinking about what might be coming, what we're afraid of. So, I think starting the conversation early is also important. Nancy Petersen: Well, and here's one of the we. I'm sorry, CeCelia, do you wanna. CeCelia: I was just gonna sort of concur with you, Tania, in terms of, in addition to that sort of the idea of repetition and patience that it's not just a one-time shot. Okay, this happened on Tuesday, 3 weeks ago, and now I don't have the space to do that. But sort of the need to repeat that open door, and maybe I wasn't ready 3 weeks ago. But by God, I really need to do this again. So please be patient with me, and please repeat this opportunity. So, the idea of repetition and patience seems important. Nancy Petersen: And one of the differences is, a lot of people don't always have a Tania that they see regularly in life to do this and what the thing that I have seen happen so many times is that the person who so …, we get a lot of rehab and we do what we do. But sometimes we'll get people who have glioblastomas, and they want rehab and I'm not sure the patient wants rehab and that yes, getting stronger is helpful. And yes, that gives them more energy. And maybe they just had a reception, and maybe they really can build up a little bit, but it's so much the families who are in denial that want them to get better, and they'll grasp. But any straw to try to make their need to understand and accept what's happening to put it off just a hair longer. And when I worked in hospice specifically we would walk in. They actually even took the word Hospice off our name tags because families were insistent that we not tell the patient they were dying. What was always most amusing was that the patient always knew they were dying and would ask me not to tell their family they were dying. So, the conversations that weren't getting put off were grief related, and fear of death related so intensely. Both desperate to protect the other member of their family, the other group and we did a lot of trying to get to the elephant in the room trying to get to the thing that everyone knew was happening. But people get there so differently that it's very difficult, as the social worker put in the middle of that pers that situation, to figure out who's ready or what their reactions gonna be. If we decide to talk about this and how to handle that reaction because we would get I mean, we changed our name tags. We got so many families angry that we were supposedly letting their dying loved one in on the little secret they were dying and instead of us saying, It's not a secret. The word. Hospice is not going to come as a great surprise to them. We just took it off. Tania Riske: Wow! That's really interesting. I do see on a routine basis what you're talking about, where families do not want death dying hospice any of those words uttered around their loved ones, and sometimes vice versa, too, but almost always it's families protecting their loved one who is dying. But to take it to that extreme of. We can't even have this on a name Tag, because it's just saying too much angering. Too many people is really fascinating, and I think very telling about just our whole thought process around death dying and grief. Nancy Petersen: Our death, denying culture. What do you possibly mean? Having worked in it, I literally would sit at a table at an exposition. You know, when we're trying to talk to people about Hospice, and people would literally go away from our table and around like Hospice was somehow catching. Tania Riske: Wow. Nancy Petersen: And say, I'm not dying. I don't. Don't talk to me about it, and like literally avoid and it would catch me. So I mean I just I was always amazed at the number of ways people would avoid talking about something. That's one of the very few things you must never. You can't avoid. No matter how far away you walk them from my table. What it does instead is make you ill prepared for when it does come. Hmm, okay. CeCelia: Wonder if we need to reframe the language that we use to describe people's reaction. You know, thinking about the negativity associated with some of the labels. I'm just. I'm just thinking about the word denial and avoidance aren't very positive words in my book. And yet we continue to label people in denial and avoidance. And I wonder if we could think about the meaning of the language, and how that might help people I don't know. Just raising the question. I don't have any answers, but. Nancy Petersen: Well, I think there's a part of me that says, if you soft pedal it, you're not doing them any favors now, that's my belief, and I have been in working with death and dying my whole life. So, I know that I'm not your average person, but I blame society. I blame the way we talk about things in advertisements, the way we talk about things on the news. We don't even use the word die. We don't use the word death. We don't use the word, you know. We come up with all these euphemisms of passed on or lost. I think personally, they are not benefiting us. I don't think so personally softening the language. Now, if I'm dealing with a family that can't handle what I'm not trying to force this sudden societal change down everyone's individual throat. But what I am saying is that in general we probably need to. You know, when you talk in different cultures about death. It's something they talk about constantly. When you look at, look at the native Americans. Death is part of the circle of life. It's what there is. And we talk about. You know, vitamin water like it's gonna be the Fountain of Youth, and we're never gonna have to die if we take enough pills that are vitamins, and we drink this magic water, and we Yoga or Pilates that we suddenly have this option and America is known for I mean, I went and studied Hospice in England, and they were vastly different in how they approach death and how they handled pediatric deaths. Jerry knows not to get me started about that. We literally act in this country. We do not let children die, we will not, no matter how much we know. That's we can't stop it, we will not people die. I saw a 95-year-old woman with advanced Alzheimer's getting a feeding tube put in and I, who did not know where she was in the hospital. She was terrified. She didn't know what was happening. It was a horrible situation, and I thought, well, probably the best thing we need to do is put a lot of food in her that sounds like the best ending for this and it just the whole thing sums up our inability to understand that if we talked about it more we might have a better reaction to it when it was time because when I've been around hundreds of people who were actively dying. They're very comfortable talking about it and they're very. They're anxious to talk about what they want and what's meant things to them and what they want to hear, and I would have family. Say, mama, don't talk like that. I don't need to hear that. I can't hear you talk about you dying right now. Don't talk to me about things like that. We're going to go make dinner, and we're just going to have a great dinner together, and push back on the dying person's desire to speak their truth and their what they wanted to talk about at the end of their life. And that doesn't. That didn't work either. Tania Riske: I agree with that, Nancy, that we are really a society, that life at all costs prolong life at all costs, and I hadn't thought about that before in light of the fact that maybe that is tied into sort of our belief system in our conversations or the conversations and the beliefs that we don't have about death dying and grief. That because we don't talk about it, it's not Ok to talk about it that facilitates that we must prolong life no matter the costs. Not thinking about quality of life but instead, thinking about prolongation of life, and those are 2 very different things. Nancy Petersen: And I see it all the time I was with the family, Father had a massive stroke. Daughters adored him, wanted him at no matter what Dad needed to get better. And so, they were pushing it better, and the dad looked at me with aphasia after a massive stroke. And I'm doing all this talking about our program, and they're so excited. And he looked at me and said, Why. yeah. Tania Riske: There it is! Nancy Petersen: Wasn't long before they let him die. They stopped coming and pushing for all of this, because he knew that the kind of stroke he had had was not going to work well with Rehab, that he had had a massive stroke and did not want to live like that, but his family was absolutely unable to manage that until he finally, after months of coming here and pretending to get better and stronger for them. And that's the other thing is, you're trying not to be mean to the family that loves you so much. They don't want you to die. But you know, let's not even get into the amount of money we're spending in Medicare, keeping people alive who have no, who, if given the choice, would never choose to live like they were living. I guarantee you they would not. And we can get into the ethics of that. When I was in Hospice we had a 36 year old man who had a ventilator and we had a 92 year old woman who was unable to explain on a ventilator who didn't, couldn't talk. The 36-year-old, said, I want to die. I am of... I have no psychiatric illness. I am not. I cannot live on a ventilator. The rest of my life. I do not want this. I've done it for 2 years. I am not living this way. and people were horrified, would have nothing to do with taking this man off of ventilator, but had no issues, taking a woman who couldn't speak off of ventilator because of her age. Now she couldn't tell you if she wanted to die or not. But that was comfortable. But taking a 36-year-old, who could talk and make a conscious choice, was horrifying and I think that for me just summed up the way that we go, that we look at death and handle death, and think we somehow have some obligation to keep people alive or never, or the pain of discussing it needs to be prolonged. I don't know if it's life that needs to be prolonged. I don't. I don't know what that is, but it may be death in this culture is a failure. And it's framed that way in some of the words like lost the battle. Yep, yep, for sure. So, it's we do it like it's war. Jerry Hoepner: How do we open that dialogue, Tania? I know you and I talked about the PLISIT model, and that as an opening for conversations. But what do you think all of you, in terms of how do we open that dialogue? Nancy Petersen: I always. I'll open it with funerals. I don't know why it works sometimes, but funerals are a practical money situation. So, if you talk about funerals in a joking way, or in a kind of a, you know. By the way, we're all here at Thanksgiving. We've never talked about this. What do you want or not want? And if you can start a conversation with something that is less than so, you're going to die sometime. Why don't we talk about that instead, it's when you die. What do you want it to look like? And it feels less threatening. I think in many cases and it can start a conversation in a non, and I know it sounds weird to say funnels are non-threatening, but sort of a practical situation that people are always told to take care of their business before they need it. So, I don't know. I think sometimes jokes or humor, or practicality sometimes are less off putting. Tania Riske: Well, and for me as a clinician. I have to be in a certain place of having built a certain amount of report before we can jump into that, you know. I don't have the sort of built in, automatic family dynamics that you might when you sit down at that Thanksgiving dinner. So, having some rapport, and really knowing a little bit more about the patient or and or their family and the relationships. But for me, I it really requires me to consciously be bold and not use the euphemisms, not just avoid and skirt around, but to really be bold and open. That conversation of first of all, acknowledging that in the case of a degenerative condition, that that is where we are heading, we are ultimately heading toward death and opening that door for conversation, about losses that are anticipated. And whether it's changes in what a person can and can't do physically, cognition, health, opening the door to those conversations and re, and making sure that I revisit that and going back to that PLISIT model where really sort of the first step in that is granting that permission to have the conversations. Maybe it's not today. Maybe it's not in a month. And frankly, with some families and patients, maybe it's never but always being intentional about opening the door and keeping the door open. How does that resonate, CeCelia? When you hear these sides of the conversations where we're thinking about it from that provider standpoint. And you are. You've had the lived experience. How does what we're saying resonate with you. CeCelia: Right. I wonder if the idea of loss isn't just dying in death. In my experience, it was a lot of different loss for 9 years. So maybe framing the conversation around loss for Wayne's loss of speech and loss of cognition and loss of toiling abilities and loss of hygiene skills and how that evolved it's not just dying as loss, but it's a loss of everything over 10 years, and maybe I don't know. Maybe reframing that loss and not in not in terms of denial or avoidance. I still have issue with labeling people in that way. I don't think that fosters an acceptance. So, in addition to that, maybe reframing loss might be I think, was important to me. Nancy Petersen: And I absolutely please don't think that I was speaking to you. I was speaking in general about the denial I, or avoidance of death, as a rule, to someone who is not in a situation of actively managing that or even thinking about it. I was talking in general to people that are out getting freebies off my table at an exhibit hall who don't even wanna start the conversation because it's something that isn't happening to them. The other thing I want to say to you is, there are other losses that you're experiencing, that I talk. I've always talked about the loss of the husband that you had until he got sick, the loss of the ability to travel with him, the loss of conversations that you would have. So it's not just the losses of him, which, of course, you worried for him and those losses, but also to understand what you were losing, what everyone was losing. And I say this to people sometimes when I say grief can happen any time and grief is something that we should look at. We're going through all the time. If you lose a job if you lose, you know your home, you know. I just moved from my big house to this small house that my son could navigate, and there was loss involved in that. Not being a choice I wanted to make, and that being forced upon us, and that being the house, we hope to be in forever. So, people experience losses constantly and I don't think we give that enough thought. We're in America. We just seem to go and go and go. We're on the move forward wherever that is, and we don't. Maybe part of this is that we don't. We're not introspective all the time about loss and about, you know, when I talk to family sometimes, it's they haven't even sort of. They haven't put towards the losses that they've experienced. And those are losses, you know. That's not. Did you lose him when they died? But those are true losses. I once had to do a thing. I was gonna volunteer with Aids patients, and they gave us all these slips of paper with, we had to write down the 5 most important, you know who's the most important person in your life. What's your favorite hobby? And then they would make us take these pieces of paper and choose which piece of paper to remove from our pile, and that was gut wrenching, and all I was doing was wading up a piece of paper, so that just that activity was very hard, and made it so clear what losing parts of your life to a disease or to a situation could cause so please don't believe that I believe people that are in that situation are in denial in that respect, or that we should use that as a negative talk just that I think we live in death denial as a culture with the way we kind of act like. It's not a part of you know. We can show all kinds of medicine on TV. But if you put anything on there about a funeral or someone dying, people push back hard. We just have a problem with it. Jerry Hoepner: Yeah, so kind of related to your example of people walking around your booth to not get to not catch Hospice. Yeah. But the other thing I'm thinking about. Nancy, as you were describing. Some of those losses. I don't think people always recognize them as losses. Just to have a conversation about changes. That you've experienced like. For example, when you said the loss of you know your larger home for a smaller home that your son could navigate. I think some people would recognize that as a change until they really think about. I loved that old house I mean, I loved it, and just opening up that dialogue might be an important piece of that conversation, too. Tania Riske: A conversation that I'm having more often is conversations with patients and families, too, about loss of identity. And I think that ties into the same idea where, if your identity was, you know, I'm gonna I'm gonna live in this house with my healthy family. And you know, we're gonna do these activities. And we're gonna take these trips and and we're going to. And this is who I am and the vision that I have when that vision changes. I think there's a real loss of who am I? What does my future look like? What does this mean? And that I think that loss of identity is a really big, a really big deal, too, that we really need to support. Nancy Petersen: And we see a lot of men. And it's not only men, but we see a lot of men who, if they can't go back to their job. They've identified themselves as the breadwinner, or the a lawyer, or whatever it might be, and just that loss is almost. I mean, they think about it as a kind of death that they suddenly, you know nobody wants to be a burden, so everyone thinks of themselves as that. But when they lose their ability to do the thing that that made them who they were in their mind. We don't talk a lot about that we talk about. Well wouldn't get you. So, security disability. And, you know, like, money's gonna solve that problem. And now you can stay at home and watch TV. You don't like and not go golf anymore with your friends, and probably not be a part of those conversations that all your guys are having at poker, because you're not going anymore. Because you have. You know, you have aphasia. So you are absolutely right. And that's why I think that and why I was big about everybody who has a part of their life, who has a piece of that person, whether it's in rehab. And they're doing speech, pathology, or PT, and they're talking about it should be comfortable with having those harder discussions than you know. How about them chiefs, or whatever it is that you can have. Once well, here, you can have it a lot we win, but you know. But you know what I mean. Like you can. You need to have a conversation that gets a little deeper. Maybe you should feel comfortable having that come. Maybe you could do somebody more good if you were comfortable with that. Jerry Hoepner: Yeah. And I'm still glad you broaden the conversation to thinking about loss, not just as death and bereavement, but thinking about the application to everyone that we're working with in terms of, you know, people living with aphasia regardless of whether that's a degenerative aphasia or whether that is a stroke-based aphasia. There's a tremendous amount of loss and change, and even being able to have a conversation about that change, to be able to say those changes sound a lot like loss. I think that's an important piece of this conversation, too. Tania Riske: Over the years that I knew Wayne and CeCelia. I really had this, I think it was a very unique and awesome experience of seeing a partnership that works so well together to support identity. Even as Wayne went through changes with his primary, progressive aphasia. How they worked together and brought me into those conversations about, how do we continue to support Wayne, but also to support CeCelia as a partner and caregiver? And I think that's a part of a conversation that very often is overlooked by providers kind of circling back to when we first started this conversation. But about how do we support people as they're going through losses that affect their identity, that affect their physical health, their emotional health, their cognitive health? How do we support families, patients, loved ones. And I had the pleasure of just really seeing a phenomenal example of that. And that's not a support system that everyone has. How do we facilitate that. Jerry Hoepner: To me it feels like. It's not a support system until you open that door. Go ahead, CeCelia. CeCelia: I was just listening. Thank you, Tania. Jerry Hoepner: Gotcha, I mean, I feel like in this situation. Tania. You made it possible for some of those conversations to be initiated. I'd be interested in CeCelia's perspective about what it took, what kinds of doors were open for that conversation? Was that something that was initiated from only Tania? Or was it initiated in both directions? What are your thoughts on that. CeCelia: It certainly was Tania and per the other speech therapy colleagues, and the aphasia community and some friends and some family. I think one question that I heard that was or comment, and I heard it several times over the course of the years was being asked like, what are you experiencing, or what are you hearing other people say? That's painful for you and sort of letting that guide the conversation when people said such and such that was really painful. But when people said other things that you might think would be horrible, it wasn't horrible at all. So maybe kind of looking at, or listening, or asking for, What are people telling you? That's painful? I don't know if that sort of addresses your question, Jerry. Jerry Hoepner: Yeah, I think so in terms of initiating those conversations about. you know what's happening in your world. And how are you responding to that it actually made me wonder to what extent was Wayne a part of those conversations. To what extent was he involved in that process, especially early on. CeCelia: Well, Wayne wasn't a real chatty guy, but of course, in my heart of hearts I I you know, being married, and so on for decades. I knew what was painful for him, even though he wasn't able to say it, and I knew what was supportive to him. So, from Wayne's perspective, he would never have. It just wasn't part of him to say, well, this is really a crack of crap sort of a thing, you know. He just wouldn't say that so it hang out. Jerry Hoepner: Was it helpful for him to be there when you were having these conversations with Tania. CeCelia: Oh, absolutely just because of the inclusion of the 3 of us you know, and Tania was so skilled in in pulling out a picture off his iPad or whatever, and it wasn't just a picture of him golfing, but it was digging deeper around his golfing, for example. So, it was a springboard for conversation. That Tania would just do over and over and over again, and of course Wayne saw it as golfing, and the fact that oh, he wasn't really golfing 18 holes anymore. And he wasn't, you know, golfing a 92 or an 88, or whatever. And Tania's questions about so what's a birdie, and what's a bogey? And you know Wayne wanted to be helpful at all that. But of course it opened up a whole door of conversation from Tania's professional position in what was happening with his identity. It ends, it. Jerry Hoepner: Go ahead, Tania. Tania Riske: I was gonna say, thank you for really highlighting that, CeCelia, because that was. I guess how I learned so much about Wayne. So, I felt like I could help to better support his identity. So when I, when we were talking about pictures, that was my favorite, because I could see such a peek into what? Who he was? Which was so much better than if I would have brought in, you know, some pre created or commercial therapy products that told me really nothing about Wayne. So that was really something that was just such a great tool. But tool is such an inadequate word for that. It was just. It worked so well for me to learn about Wayne and for Wayne to be able to school me a little bit, too. Sometimes. CeCelia: And it's just an example, I think, of starting where the person in the family are at in in the pictures. Of course, that was, as you said, tool, or whatever it's called. It was like this is who Wayne is, and this is his life. It's like what's painful for him and for me and for us together. So, it was. It was the foundation that guided the discussion, and not something you know, sort of external, that that was sort of put upon us. If you will. Jerry Hoepner: Maybe this is a good time. I jotted a question down as we were talking from a life participation approach to aphasia. Why is it so important that people have this conversation, or that this is a part of our conversations about loss and grief and death and dying? Why is that such an important piece of the life participation approach. CeCelia: I don't know 1 one aspect that I thought about when you asked that, Jerry. It's of course going through the process, and the process never ends of dying and death. It never ends but it's so. It's sort of the day to day, but it's also sort of the memory of that. Now, when I look back 8 months later, I I those are the good things that I have. Those are the times in the bottle that I will keep forever and ever and ever. So, it's not just. Oh! Wayne was discharged. Wayne died on August 20, fifth, etc., etc. It's like, Oh, that that's been my life. So, it's that time in a bottle idea of, you know, one can go with Jim Croce idea. Jerry Hoepner: Yeah. And I think that alone is powerful, that I think some clinicians might feel like, Oh, don't even touch that time in a bottle, because that's sad when you really frame that time in a bottle as something really positive and meaningful for you. And I think that's a really good reframe on the entire lens, of talking about loss and death, and dying. Tania Riske: I feel like so much of that life participation model is also about honoring identity, honoring wishes. Honoring people as individuals, not as impaired patients who we must fix. But instead, as people with lives and dreams, and some of those dreams have just been shattered or maybe they were shattered years ago. But yet they are. These are people with identities who matter as individuals and really honoring that. And I think that's another reason these conversations are important to honor the fact that yes, there will be death, and we want to do kind of right by you and by your family and loved ones with how we approach that and also recognizing these losses that we've been talking about, now honoring those and not just throwing them away, but doing our best to continue to really celebrate honor, embrace individuals and grief anticipating grief. Bosses is all part of that. Nancy Petersen: So, I just have a question because you're typically talking about people who have a progressive situation so that it. Tania Riske: That's true. That's where my lens is a little bit focused right now. But yeah. Nancy Petersen: And so that would be an I don't want to say obvious, but a wise choice to add to those conversations. I wonder if it, I think it needs to be a conversation that's in any in any sort of situation where there has been loss. Even if it's someone who's trying to rehabilitate from a stroke like we talked about, or someone who doesn't have the path of degenerative situations. But maybe that whole thing about how we have a difficult time with loss or recognizing loss would be beneficial, because we would be in a better position when other losses occurred. In other words, that it would make believing, understanding, discussing, recognizing loss in many situations would help us. What happened with what happens when those final losses start to occur. Because I just don't think we look at Change. We try to put a positive spin on change, and there's nothing wrong with coming up with the good reasons for that change, but that we don't recognize the loss that comes with those changes, you know. Yay, Daddy got a new job in a new city, and we're leaving. And then you hear we're having trouble with the teenager, because you know, I know it's hard for her, and we're changing schools and all of this. But if you don't then recognize per loss, even if to you it seems like a lesser concern than the other things that are going on that you're telling people that those losses don't count, or that that emotion isn't important and I'm just thinking about our speech pathologists and the opportunities that they have, or that opportunities any speech pathologist would have after an event or a health event to make to make it more than just, you know. Let's talk about Bill, and how you know our story today, or whatever it is that they're doing. That's sort of the more traditional speech pathology like you mentioned Tania, the typical structured speech pathology session that they would have. Tania Riske: Nancy, that makes me so happy that you kind of bring that up, because that's something. CeCelia and I have had extensive conversations about and that I get really all worked up and excited about is really the role of speech pathologists in counseling in general, you know. Yeah, maybe it is more at times focused on grief. Maybe it's identity other times. But just that whole idea of there is lots and I think speech pathologists have a huge role in acknowledging that supporting that you know, there's lots of conversation going on right now about what kind of education do we need to provide for a speech pathologist to better enable them to counsel and counsel well, and still staying within our scope of practice. Of course, our very respectful boundaries. Nancy Petersen: Absolutely. I can tell you, I can tell you there's very little even in doctor schooling. Oh, I believe they don't get any. They just nobody gets this. So, I love Jerry's been doing and what you're doing. It's just if you have an hour with a person who's coming out of some sort of crisis or medical situation. Why not use it in a way that's beneficial in a larger scope than just working on your t's, or whatever it might be. Jerry Hoepner: Yeah. And this has just been such a fantastic conversation. And I think you've done a really nice job of tying things together in terms of the life participation approach. I mean, if I just take a step back and kind of summarize our conversation, part of what makes an effective interaction is not avoiding those difficult conversations, but leaning into them, asking the questions, creating that safe space, as Tania said, for the conversation, giving permission to discuss those tricky topics. And then just actively listening, beginning where the family and that that individual are at. So, I hopefully, I've some summarized those things. Well, any missing elements that we should discuss before we bring this great conversation to a close. Nancy Petersen: I just appreciate you guys, I don't know the 3 of you that well, and I'm trying not to. I get very excited. And on my soapbox about things that I've witnessed, and things I think we could do better. So, I just want to apologize if I don't know the kind of the framework. But I certainly learned a lot and appreciate very much what you all shared today. So, thank you for that. Tania Riske: I really enjoyed having conversation about things that are so often really kind of dismissed, or nobody wants to talk about that, Nancy. I really appreciated your frankness. I you know your honesty, and just putting out there the things that we tend to be so uncomfortable about. And I think you're so right that these conversations need to happen. And they need to happen outside of the traditional of this context that we're talking about where people are looking down the barrel at loss but also they need to happen at the Thanksgiving table. And now those they just those conversations are so valuable. But yet we do such a stellar job at not having them. So. Thanks for talking about that. Nancy Petersen: No problem. Thank you. Tania Riske: And, CeCelia, I'm always so appreciative and grateful for your willingness to be so vulnerable and to really put so much out there about your lived experience. CeCelia: Thank you. Jerry Hoepner: Well, I want to thank you all for having this conversation. It feels like we could talk for another day, but we'll bring it to a close, for now. Thank you all, and I look forward to more conversations in the future. Tania Riske: Thanks. Jerry. Nancy Petersen: Bye, Jerry. Jerry Hoepner: On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.

Dr. Janet Patterson: Welcome to this Aphasia Access Aphasia Conversations Podcast, a series of conversations about aphasia, the LPAA model, and aphasia programs that follow this model. My name is Janet Patterson. I am a Research Speech-Language Pathologist at the VA Northern California Healthcare System in Martinez, California, and a member of the Aphasia Access Conversations Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their efforts in engaging with persons with aphasia and their families through a variety of educational materials and resources. I am the host for our episode that will feature Robin Pollens, in which you will hear about the transformative power of mentoring. These Show Notes accompany the conversation with Robin but are not a verbatim transcript.   In this episode you will hear about: 1. the presentation of the Aphasia Access, Sandra O. Glista Excellence in Mentoring award to Robin Pollens, 2. stories about mentoring from Robin's career as a speech-language pathologist, and 3. the power of a mentoring relationship to affect the relationship with people whom you mentor, from whom you receive mentoring, and with whom you share mentoring opportunities.   I am delighted to be speaking with my dear friend and longtime LPAA colleague, Robin Pollens. Robin is an ASHA certified speech language pathologist and held the positions of adjunct assistant professor in the Department of Speech, Language and Hearing Sciences at Western Michigan University, and clinical supervisor and coordinator in the Aphasia Communication Enhancement program. She also provided clinical speech-language pathology services through home health, and skilled nursing outpatient clinics.   In addition to her focus on LPAA, Robin is passionate about graduate education in speech-language pathology, palliative care, interprofessional collaboration and ethics, and has written and lectured nationally and internationally on these topics.  In 2023 Robin was awarded the Sandra O. Glista Excellence in Mentoring award from Aphasia Access. 2023 marks the inaugural award given to both Robin and Leora Cherney from the Shirley Ryan Ability Lab in Chicago. The “Sandy” is awarded by Aphasia Access and recognizes an exceptional mentor who has demonstrated unwavering commitment, unparalleled guidance, and profound impact on the professional and personal development of others working in the aphasia community. The award is named in honor of Sandy Glista, one of the founders of Aphasia Access, and is a testament to her enduring legacy, and a reminder of the transformative power of mentorship.   Welcome Robin, to this edition of Aphasia Access conversations. Ms. Robin Pollens: Janet, thank you. Thank you so much for all that intro, and it's nice to be here to talk with you today. I want to also right now, thank Aphasia Access for this honor. It was especially meaningful, towards the end of my career, to receive a mentorship award and to hope there's something that I did, or I said, or I wrote over the years that was meaningful to somebody else. I also appreciate that I'm sharing this inaugural award with a wonderful friend, Leora Cherney, and that this award is named for my close friend and collaborative partner, Sandra Glista. It's a real honor to have received it and an honor to talk with you today, Janet. Janet: The feeling is mutual about talking with you, Robin, and the honor is certainly well deserved. Robin, as I mentioned earlier, you were honored with the Sandra O. Glista Excellence in Mentoring award. This award recognizes your commitment to mentoring individuals who are part of the aphasia community, including clinicians, researchers, persons with aphasia, and their care partners, students and others. Through Sandy Glista and this award, we are reminded of the transformative power of mentoring. Robin, how do you envision the value of mentoring to individuals and to the Aphasia community?  Robin: When I received this award, it set me on the road to reminiscence. I remember being in, I think, undergrad, studying Speech and Hearing Sciences and I had not yet done any clinical work. I had the opportunity to sit and observe a grad student doing an aphasia assessment with a patient. I was sitting behind this two-way mirror and I'm watching, and my mind is going, “okay, she holds up this card; and then she writes something down; and then she has someone point.” That's what my mind was doing. Sitting behind the two-way mirror with me happened to be a visiting professor from Australia named Anne. She turned to me and said, “Look at all of that empathy”. And I went, in my mind, “Empathy, what does that have to do with it?” Then I looked through the mirror, and I saw that this grad student was talking softly and looking kindly in her eyes, and kind of patting the client when she got frustrated. I thought, “Oh, I guess that's part of this.” So I'm thankful for her (Anne) and I feel like she was my first mentor. She only said one sentence to me, but it set me on a path for what it means to be an SLP. I know that recently, like in the last five years, there's been more discussion in our field about the importance of counseling, and mental health and people with aphasia. When I would be watching a grad student doing therapy, and I'm supervising, sometimes I would see them having what I would call a counseling moment. I would make sure to let them know later, saying perhaps, “I saw when the patient was frustrated, you stopped the task and you talked with them kindly. They told you about some things that were happening, and you gave an empathic comment.” This is the way that I think about mentoring, that it's a pathway to learning or growth that comes out of your own experience, and then it goes on to others and recreates. I can go on and on with stories.         Janet: Please do tell stories, Robin, because I'm fascinated by stories. I have another question though, Robin, as you continue to tell me your stories, you've led right into the question that's on my mind. People may think of mentoring as one way, such as the experience that you had sitting behind the mirror and watching the graduate student. I see mentoring as an interactive relationship that goes multiple ways. I would love to hear more of your stories and learn about your thoughts about interactive mentorship. Does that make sense to you?  Robin: Yes, I do like that framework that you just said, Janet. And when I knew I was going to be doing this discussion with you today, of course, I went online, and I looked up mentoring to see what kind of definitions I might find. I actually found a website that I liked; it was Art of Mentoring. The definition for mentor they used was a coach, a connector, or even a challenger to help their mentees reach their full potential. The mentee will lead the relationship, inviting the mentor into their own inner dialogue to assist in working through, and I really liked that. I think that's ideally how the relationship can work. So, for example, when I was supervising the students in the ACE program, when it got to be in the middle of the semester, we would have a midterm conference and I would always say, “Tell me about your goals for yourself for the rest of this semester, how would you like me to help you?” The answers were so varied, there were some people that were very focused on the clinical learning tasks, they might say something like, I'm having trouble being in the conversation and keeping track of data, or this patient's talking so much, I don't know how to navigate the session to get everyone involved. So, there were clinical skills. Whereas there were other people that would say something like, I get so anxious before the session, I'm so nervous, it takes me a while after I met it to really be able to focus on what's happening. Those are two very different kinds of goals, and I wouldn't have known as their supervisor and mentor for that situation if I hadn't asked, and if they hadn't, let me know. So, I do think that that's important. I also think sometimes we have to seek out our own mentors; that's part of the relationship. In the beginning of my career when I was in my clinical fellowship year, I didn't have one of these strong clinical fellowship, amazing experiences that some people did, I was in a public school, and I had someone who was my supervisor. During that time, I was able to get a position in a different city, working in the hospitals, and another supervisor agreed to keep following me as the supervisor. In the hospital, I had some new patients that had had injuries, and I wasn't sure what to do. My supervisor didn't know anything about that, and I ended up going to a conference in Braintree, Massachusetts, and they were talking about this new thing called Rancho Los Amigos Scale, and I learned about it and brought it back. Sometimes throughout our careers, I think you need to actively seek out a mentor. I think I remember that Aphasia Access started a program where if you wanted to be a mentor, or you have a mentor, you can let them know; I think that's great, because there's always things that go on as your career continues that you may want to get some guidance for. Janet: What I'm hearing you say, Robin, if I can paraphrase your words, is as an individual, a good thing is for one to be open to mentoring opportunities, whether you provide them or acknowledge them, when you see a student or a colleague performing in an empathetic manner, or for your own self seeking out someone to give you assistance. The mentoring could be a large role, such as in a CFY, or a lengthy one such as a  two- or three-year relationship, or it could be a very short-term kind of mentorship. This seems to me to be what you're saying, make yourself open to learning and interacting with all sorts of people, because they can have an influence on your life, and presumably, you on theirs as well.  Robin: You summarized that great Janet. Yes, and I know that when I was working in home care quite a long time ago, I remember feeling in awe of the family members, the amount of care and the total concern, and they modified their life to care for their loved one. All of a sudden, I remember that feeling, and then fast forward two decades later, when some of my family members had illness, and I was in that role. I was drawing upon what I learned from them, which in turn, I share with our families of the people with aphasia when they're having medical situations. So hopefully, we're just all doing this for each other, throughout our lives.   Janet: What's the phrase “together, we're more powerful”, that's not it exactly, but our thinking together and the little pieces of information about mentorship or actions about mentorship, that you can recall from 15 or 20 years ago, that can help you today, are just as important as the word someone says to you this afternoon, about how you can be a better clinician, or you can give guidance to someone who is seeking it from you. Exactly. Robin, in your position at Western Michigan University, I know you have mentored numerous students, and we could probably talk for months or years about wonderful stories. Some of them, most of them, I'm sure are successful, but there probably were a few that were less successful mentorship relationships. I know that you've mentored students, what I'm interested in learning from you is have you also mentored persons with aphasia or their care partners?   Robin: Yes, and I think there are different ways to mentor somebody with aphasia. I think the piece of it I'm going to pick up on has to do with helping them express their identity, helping them to reach their level. And again, I think for me, the roots of it came actually long before I knew about Life Participation Approach to Aphasia, it wasn't really articulated yet. I remember working in home care with a woman in her 40s. She had her stroke, and she had severe aphasia. But also, all of a sudden, she could no longer work as a crossing guard. That was her work, as a crossing guard for the elementary school. She also was no longer part of her caring circle at church, she was the one that greeted people, and sent get-well cards. I think that one really struck me because I was also on the caring circle at my temple. So, we ended up in therapy focusing on reading and writing, but in the context of being able to write sympathy or get-well cards. She made a dictionary of phrases you could write and things like that. So, fast forward to being in the ACE program, which was created by myself and Sandra Glista, to be a place where goals were addressed, not only the impairment level, but also the participation level, and there's certainly countless examples there I can think of, even from way back in the beginning, because it's in the article that we wrote. There was an organization in our city called Senior Corps, and it's actually in many states still. We trained some of the volunteers to communicate with people with aphasia, and then matched them with some of our people with something they wanted to do. So, one of the people ended up being, with his conversation partner, part of a bowling league, an accessible bowling league. He was young, he'd always been in sports, and he was just sitting home so that was his identity. Another person was matched with a woman who ended up going into a first-grade art class in elementary school once a week and helping out in that art program with her conversation partner. So, these were things that we started saying, we're working on communication, but we're also in some way guiding them towards a meaningful and participatory life. So that's one way, I hope that I've been a mentor for some people with aphasia. Janet: I bet you have been a mentor for a lot of people with aphasia, because I can just visualize you thinking, and tapping into all the information from your former mentors, as you try to find ways to help an individual with aphasia, and his or her care partner or friend, take that step to being able to do whatever it is that they'd like to do, as well as they can possibly do it. I'm glad that you've had all these mentoring opportunities, and I think you're a leader in this field.   Robin: Thank you, Janet. I'd also say I think a way to be a mentor with someone with aphasia is also just having an authentic relationship with them, when their communication changes so much and people don't know how to communicate with them, and they don't know how to communicate with others. Being someone that they know they can talk with, they can relate with and laugh with, I think that in and of itself is a valuable way for interacting with somebody who has a sudden change in their communication.   Janet: You're talking about accepting someone for who they are, meeting them where they are, and together, you have a relationship that is built on trust, so that that individual would be more willing to accept from you, ideas that you suggest. They may be wacky ideas at the moment, but they certainly work in the long run. That relationship helps you both accept information from each other. I'm really curious, you've told us several stories about mentoring, and we'd love to hear many, many more. Can you think of a favorite mentoring experience you've had in some part of your career? Tell us one about one of those.   Robin: Sure, I'll name the one that I just got to go through. That was mentoring the next coordinator of the Aphasia communication Enhancement Program, which is Alison Mezcal. I had the great pleasure to stay for a semester while she was there, and we were able to do all of the coordinating. I already knew that she was a great clinician, she already knew the ACE program, she had been our student 10 years before. But the coordination piece, which is scheduling, and contacting people and planning, and all that would be new. So, we got to do it together over the semester and that was so satisfying to be able to do that. I also literally cleaned out the office and all the files and all the things so that it was ready for the next person. I know many people don't get to leave their position with the opportunity to do that, to directly mentor the next person, and it was a great pleasure. Janet, on the mentoring website, they talked about their logo, and it was two geese flying in, here's what they said, “The geese at the front of the flock improve the aerodynamics to make it easier for the followers to fly; the geese at the back honk to encourage the front geese to keep pushing forward.” And they are constantly shifting position, meaning the mentor could be leading from behind or in front, and sometimes just flying alongside. And that's what I had the opportunity to do with Allison. So that was a great pleasure.   Janet: That was a great story, Robin. I just imagine the warmth it brought to your heart as you watch this living thing that you and Sandy created many years ago, move on to the next generation. But you know, I thought about something else, too, that this is part of, I think, what might be thoughts that a mentor has to consider. So, you've invested a lot in your ACE program, quite a bit over the years, and your heart and soul are in that, and you have mentored the next generation beautifully. But now you have to step aside. The next generation may have different ideas or may take it in a slightly different way, or may do things that you never even thought about. So, part of what a mentor has to do I would imagine, is also take a deep breath and know that you've done the best job you can. But then step aside and maybe your job now is to be at the back of that flock of geese and keep honking as the program moves forward under a new leader and a new director.   Robin: Excellent. Yes, and that's very fun. I have great confidence and hope, and in a couple of weeks Alison and I are meeting for coffee, and I want to sit back and just hear all about the things that she's creating.   Janet: That's wonderful. You are indeed a wonderful mentor, Robin, you've been a great mentor to me over the years, sometimes you knew it, sometimes you didn't, as a result of the conversations we've had, and through the different projects that we've done over the years. Let me turn to a slightly different topic now. We've mentioned this a couple of times already, that for many years you worked with Sandy Glista, who is a dear friend to both of us. I believe that being honored through this award, receiving the “Sandy”, it must bring warm thoughts of your days working together. Please tell our listeners about how Sandy's friendship and collegiality have influenced you during your career.   Robin: I would say in the beginning, which would be the late 1990s, I'd say Sandy initially was a mentor, the kind of mentor that many people spoke about. In this regard, she was a connector, she connected people together. Well, she connected me to you, Janet, when you and myself and Ellen and Glenn did a project years ago on Cybersafety for people with aphasia. I was doing homecare and Sandy was working on a project with keeping elders communicating. She invited me to be involved in this project and start having some Western students intern with me. Then she invited me to do a presentation on a topic she was starting out investigating, interprofessional education, which was a new thing. We were in a college, and we had OT and social work and all the different disciplines together. They did a presentation, I brought in my team, my home care, OT PT, social work team, and we proudly presented a case. It was after that, that she was going to be going on sabbatical and she asked me if I would take her place in working with people with aphasia at Western, and that's when I began actually working at Western, in 2002. Once she came back, we started talking, and creating and planning this new version of an aphasia program and for a couple of decades, we were collaborative partners. We would add to each other, fit to each other, enjoy being together, and have a wonderful creative experience, creating these ideas that we had and seeing them happen. If we did anything such as write something or present something, it was always Sandy Glista and Robin Pollens, or Robin Pollens and Sandy Glista, whether they were even present or not, because the ideas germinated from both of us. So, if you ever have the opportunity to have a work relationship like that, it's a real gift.   Janet: Our listeners can hear, I hope, the joy in your voice, as you're talking about that relationship you had with Sandy. I know that was a very special relationship for the two of you. I can see because I'm looking at your face right now, I can see the joy in your face. Recalling the close times and close work that you and Sandy had together, I'm sure that there were some disagreements or seeing things from different perspectives, but your last statement saying that it was a wonderful working relationship and you you'd like to see everyone have that kind of close, creative relationship, is admirable. So, thank you for that insight. Robin. I'm also wondering who were some of the mentors that you and Sandy drew upon? Robin: When Sandy went on sabbatical, she visited national and international aphasia centers, and she brought back the inspiration and the sense of community that she experienced there. I was reading the World Health Organization ICF with its impairment, activity, and participation parameters, and I could envision how we could use this concept to create goals for clients, and to create participation groups where clients could work on their impairment-based goals in the context of an activity of choice. Sandy and I studied relationship centered care, which came out of the Fetzer Institute here in Kalamazoo, and we envisioned a program where family members or care partners were part of the mission of a program. Finally, in our collaboration, we created a sequential way to educate the students through the semester to be able to provide this type of SLP treatment. On the first page of the article we published in 2007, you'll see a long list of people who inspired us. Those were ACE program mentors and as ACE continued, Elizabeth Nadler, Marie Koss-Ryan and Suma Devanga added their creativity supervisors. And I would add that once Aphasia Access was formed, there were many people in Aphasia Access, who became our collaborative mentors. So, thank you to everyone.   Janet: Robin, you said something about interprofessional education and interprofessional practice, and it kind of got lost in a sentence, and I'd like to circle back to that and acknowledge that you and Sandy were visionaries in this area. Nobody else was talking about interprofessional practice, or publishing about it, or making it happen. You and Sandy were at the forefront of that.  I remember those papers that you wrote, talking about the value that each one of the rehab professionals could bring to the treatment of the patient and how they we can all reinforce the goals for the patient, the various goals. So, we all owe you a debt of thanks for that, as well.   Robin: I didn't realize that was that different. I just realized that we had the opportunity since we were at Western and there were the other professionals there, that each semester, we ended up creatively finding ways to coordinate with OT, or bring in a social worker or whatever it was. I have enjoyed watching the growth of this area of interprofessional over the last years and seeing how it's appreciated.   Janet: I think it's very important. A previous Aphasia Access Podcast, #84, was with Mary Purdy, who talked about interprofessional collaboration and related a specific story where she and a physical therapist work together to achieve the particular goal of one of their clients. Another podcast, #78, with Michelle Gravier, Albert Mendoza, and Jennifer Sherwood described an interprofessional exercise program. I'm so glad that there is a greater appreciation for interprofessional education and interprofessional practice these days. So, Robin, as we bring this conversation to a close with thoughts, or as I like to call them Monday Morning Practices, do you have ideas that you could share with our listeners, things that they might either think about in the long term, or that they might do on Monday morning when they see their clients?   Robin: Well, I almost feel teary as I'm answering this, but I'm going to work through this teariness. I'm thinking about beginnings. And I'm thinking about endings. And so, I'm thinking about making sure that in the beginning, if someone's in the hospital and has new stroke or new aphasia, whatever it is, that you are giving them hope, as described as important in the article way back by Avent, Glista and others, and I can't talk without giving a story, Janet. I'm remembering in homecare, seeing a new patient with severe aphasia, not much talking. The wife left the room while I was in the session, and I noticed a deer's head on the wall. So, I took out a piece of paper and I wrote down some written word choices, you know, baking, gardening, hunting, whatever. I said, “Tell me, I want to learn about you.” And he pointed to hunting, so we ended up having the whole conversation using supportive communication strategies and written words. At the end of the almost hour, his wife came in the room, and I said to her, “Oh, I just was hearing about the time that he and his brothers went up hunting up by Lake Michigan, and they had that rainstorm, and then the roof was leaking.” She looked at me and said, “How did he tell you that?” So, I took out the piece of paper, and I showed her our conversation, basically, with words and drawings. He had already gone through acute care, and inpatient rehab so I said to her, “Didn't anybody show you this along the way?” And she said, “No.” So that's one of the messages that I often like to express - the importance in the beginning of giving the family a method to be able to communicate because that's a way of giving hope. I can also quote another colleague of mine, Marie Koss-Ryan, who did some acute care pretty recently: same thing - she went in the room, new stroke, new severe aphasia. He was trying to read his menu to order breakfast and couldn't do it. So, she took out her iPad, pulled up a page of juices, and said,” What kind of juice do you like?” and he pointed to tomato juice. A little while later the tray came and then his wife came for the day visit and she saw the tomato juice, and she burst into tears? Marie asked what was wrong, and she said, “How did somebody know he drinks tomato juice every morning for breakfast.” She took out her iPad and showed her how you can pull up pictures. To me that's giving hope through a way to communicate. So that's the piece from the beginning. And I can't help but mention just briefly, to also remember if you are working in palliative care and end of life care, to also show up as a speech-language pathologist that can help people to be able to communicate as best as they can, even if it is at the end of their life.   Janet: Those are, are very important points, I think, to start us off to remember the power of communication. And then also to know that there are lots of messages people wish to convey towards the end of their lives. How can we help them convey those messages? Robin, this has been an amazing conversation. And I know that you and I will have many more opportunities to talk to each other. I just wish we had many more days right now to listen to the stories and share the thinking and the insights and the bits of mentorship we have received from each other and from people in our clinical worlds. So, thank you so much for speaking with me today. I am proud to call you my friend and my colleague, and again, congratulations on receiving the Sandra O. Glista Excellence in Mentoring award. I know Robin, that when I asked you to be interviewed for this podcast, you were initially reluctant, as is your style. I'm so glad that you finally agreed because the messages that I'm hearing in our chat today, they're far beyond you and me. They're about the power, the transformative power, of mentoring, no matter who you are, or who you mentor. So, I thank you, and on behalf of Aphasia Access, I want you to know how humbled I am by your long-standing commitment to mentoring. I believe that even though you are retired from Western Michigan University, you have many future mentees that will also be humbled by your long-standing commitment to aphasia, to people with aphasia, to their care partners, and to mentoring.   Robin: Thank you, Janet. Thank you very much. And I guess I will say this ended up being a gift that you gave me to be able to do this. I mean, we should all do it for each other to give them a chance to reminisce and tell their story and get perspective and life. So, thank you.   Janet: You are more than welcome, Robin. I would also like to thank our listeners for supporting Aphasia Access Conversations by listening to our podcasts. For references and resources mentioned in today's show please see our Show Notes. They are available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, please email us at info@aphasiaaccess.org. For Aphasia Access Conversations, and again thanking you Robin Pollens, I am Janet Patterson and I thank you all for your ongoing support of Aphasia Access.                           To engage in further conversation about mentoring, Robin can be reached at robinpollensslp@gmail.com     Reference List APPENDIX B: Rancho Los Amigos Scale-Revised. (2011). Continuum (Minneapolis, Minn.), 17(3 Neurorehabilitation), 646–648. https://doi.org/10.1212/01.CON.0000399079.30556.03   Avent, J., Glista, S., Wallace, S., Jackson, J., Nishioka, J., & Yip, W. (2005). Family information needs about aphasia. Aphasiology, 19(3–5), 365–375. https://doi.org/10.1080/02687030444000813   Glista, S.O. & Pollens, R.D. (2007).  Educating clinicians for meaningful, relevant, and purposeful aphasia group therapy. Topics in Language Disorders 27(4), 351-371. https://doi.org/10.1097/01.TLD.0000299889.62358.6f   Pollens R. (2003). Home care. Hom Healthcare Nurse, 21(5), 348. https://doi.org/10.1097/00004045-200305000-00015   Pollens, R.D. (2020). Facilitating client ability to communicate in palliative end-of-life care: Impact of speech–language pathologists. Topics in Language Disorders 40(3), 264-277. https://doi.org/10.1097/TLD.0000000000000220     URL The Art of Mentoring    https://artofmentoring.net/what-is-mentoring/   Aphasia Communication Enhancement Program, Western Michigan University https://wmich.edu/unifiedclinics/vanriper/aphasia   Fetzer Institute       https://fetzer.org/   Aphasia Access Podcast Conversation #84 Interprofessional Practice and Interprofessional Education: In Conversation with Mary Purdy https://aphasiaaccess.libsyn.com/interprofessional-practice-and-interprofessional-education-in-conversation-with-mary-purdy   Aphasia Access Podcast Conversation #78 A Llama, a Resistance Band, and Neil Diamond Walk Into a Bar - An Interprofessional Exercise Program for Individuals with Aphasia: A Conversation with Michelle Gravier, Albert Mendoza, and Jennifer Sherwood       https://aphasiaaccess.libsyn.com/a-llama-a-resistance-band-and-neil-diamond-walk-into-a-bar-an-interprofessional-exercise-program-for-individuals-with-aphasia-a-conversation-with-michelle-gravier-albert-mendoza-and-jennifer-sherwood

Interviewer info Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia and other neurogenic communication impairments. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer. In this episode, Lyssa Rome interviews Dr. Janet Patterson about evaluating and treating auditory comprehension deficits for people with aphasia.   Guest info Janet Patterson, Ph.D., CCC-SLP, is a Research Speech-Language Pathologist at the VA Northern California Health Care System in Martinez California, where she was formerly the Chief of the Audiology and Speech-Language Pathology Service. Janet has also held leadership positions in the Academy of Neurologic Communication Disorders and Sciences, and ASHA Special Interest Group 2, Neurogenic Communication Disorders.  She is an ASHA Fellow.

  Show Notes - Episode Next STEPS: In conversation with Professor Ian Kneebone Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, and Thursday Night Poets.  I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Professor Ian Kneebone from the University of Sydney Technology.  Biosketch: Ian Kneebone Professor and Head of Discipline (Clinical Psychology) at the Graduate School of Health at the University of Technology Sydney. He is a chief investigator at the Aphasia CRE and has led and co-facilitated much of the work on optimizing mental health and wellbeing for individuals with aphasia. His work on illuminating the stepped care model as a guide for clinicians working with individuals with stroke has helped speech-language therapists and other rehabilitation disciplines to better understand their roles in psychological care after stroke and specifically aphasia. He previously joined the Aphasia Access Conversations Podcast with me for Episode #34. We're excited to have Ian joining us again, as so much work has taken place in the area of psychological and psychosocial interventions for individuals with aphasia in the past five years since that previous podcast conversation. Professor Kneebone and his colleagues have been at the center of that work, including developing and evaluating the ASK trial, the Kalmer relaxation program, collaborative goal setting, Reducing Emotional Distress in Stroke (REDS)and low intensity psychotherapeutic interventions, among others. In addition to Professor Kneebone's large-scale investigations about psychological interventions, Ian is a clinician at heart, also very engaged in hands-on clinical work, where he directly collaborates with speech-language pathologists and other disciplines. I'm privileged to discuss these topics with Ian today. Take aways: Need for psychological care for people with aphasia: People with aphasia have higher rates of depression, anxiety, and other psychological needs. People with aphasia are twice as likely to be anxious or depressed as someone with a stroke without aphasia. Stepped care model provides direction: The stepped care model helps us to define scope of practice and where we fit in, based upon our level of training. It also provides guidance for psychological care that all speech-language pathologists/speech-language therapists are trained to implement. Behavioral activation: This is a direct connection to the Life Participation Approach for Aphasia (LPAA). Increasing engagement in personally relevant activities is at the heart of both approaches. Ian discusses where solution-focused brief therapy and acceptance and commitment therapy fit into the stepped care levels: With additional training, good evidence is developing for these approaches. There is a need for ongoing psychological supports in the chronic phase of recovery: Increased mood state is associated with better physical and communication outcomes AND dealing with the physical and communication issues can improve mood state. Shifting to “compensation” can make people with aphasia feel like they're not going to recover further: We need to make sure that we have conversations about those shifts so that people don't misperceive that shift as the end of progress. SLPs/SLTs need to train mental health professionals to use supported communication techniques to support their interactions: SLPs/SLTs may need training on how to teach other disciplines to support communication. People with aphasia should be involved in co-design work to address psychological interventions. From a research perspective, we need to involve people with aphasia and from an intervention standpoint, we need to involve individuals with aphasia.   Interview Transcript: Jerry Hoepner: Today, it's my pleasure to introduce Professor Ian Kneebone. In Kneebone, is professor and head of discipline in clinical psychology at the Graduate School of Health at the University of Technology Sydney. He is a chief investigator at the Aphasia care and has led and co-facilitated much of the work on optimizing mental health and wellbeing for individuals with aphasia. His work on eliminating the step care model as a guide for clinicians working with individuals with stroke has helped speech language pathologist and speech language therapist and other rehabilitation disciplines to better understand their roles in psychological care after stroke, and specifically aphasia. He previously joined the Aphasia access conversations podcast with me for episode 34. We're excited to have Ian joining us again. As so much work has been done and taken place in the area of psychological and psychosocial interventions for individuals with aphasia. In the past five years since that previous podcast conversation, Professor Kneebone and his colleagues have been at the center of that work, including developing and evaluating the Ask trial, the calmer relaxation program, the collaborative goal setting, project and low intensity psychotherapeutic interventions among others. In addition to Professor knee bones, large scale in investigations about psychological interventions, Ian is a clinician at heart, also very engaged in hands on clinical work, where he directly collaborates with speech language pathologist and other disciplines. I'm privileged to discuss these topics with Ian today. I'm excited to dig into this conversation. And I'm really interested in talking a little bit about your perspectives about kind of the intersection of speech language pathology, and psycho psychotherapeutic interventions, psychological care, those big topics in general. And I know that in our past conversations, we've discussed a little bit about just the profound need for psychosocial psychological interventions for individuals with aphasia and the kind of the lack of access to care for mental health providers, to individuals with aphasia. So maybe we can start out a little bit by just sharing your thoughts on the role of speech language pathologists in addressing communication-based psychological supports for individuals with aphasia and their families.   Ian Kneebone: Well I think the first thing is to say that the whole stroke team should take responsibility for psychosocial issues and challenges, both from a prevention point of view, but also an intervention point of view. Where there's the potential to do so. Particularly with people with aphasia, the speech pathologist, or speech language therapist's role is a real standout one. And we know frequently that this work, because of the communication problems, often falls to Speech, Language Therapists to, you know, by their own admission, feeling unprepared to do it. So, I think there's certainly the will there from speech language therapists to be involved in this work, we just need to provide the right training the right scope of practice, and to get things going. So, this this gap in services is filled. You know, you were talking about the rates of psychosocial issues, but we do know that if you've got a stroke, and you've got a phase, you're afterwards, you're twice as likely as someone with without aphasia after a stroke to be anxious or depressed and have very, very high rates. Even clinical levels of depression are common. I guess it's not surprising anyone who works in the area will know that, but it's still very sobering to restate that statistic.   Jerry Hoepner: Yeah, it sure is. Just speaks to the tremendous amount of need and, and obviously, we know the tremendous amount of unmet needs for people with aphasia and their family members as well. Just because of how we're barely scraping the surface of this issue, I think, but making some good progress in those directions, you've done some really foundational work on the Stepped Care Model for stroke and even other populations as well. How can SLPs draw upon that model as a way to help them to understand scope of practice issues, to understand where they fit and kind of guide their interventions?   Ian Kneebone: Well, I think Stepped Care has been really useful. And I've gotten great feedback on this not that I invented step care by any means. But certainly, the improving access to psychological therapies model from the UK started this off in mental health. But the opportunity is to convey and allow people to know where they can work and what's appropriate, and when they might need to refer on or co-work with, with another profession. And the Stepped Care Model really does that. So, people are able to say, Well, I'm involved in this group, it's designed to prevent things like depression and anxiety, which are very common, as we just said, and I'm able to learn these skills or apply these practices to improve outcomes and prevent this. But you know, at some point, when these levels of symptoms of such and particularly questions of risk, risk of self-harm, risk of suicide, those sorts of things, when commonly people would refer on to mental health professionals. And I think the unique ability of speech language therapists to provide supportive communication training for mental health practitioners and so on, means that the role goes beyond just prevention, and to actually intervention. But also, to say that the model where people stepped and matched to the level of care they need, means that, you know, there is a scope of practice beyond prevention for speech language therapists, and that's those therapists who choose to train in psychological practices and psychotherapies. So, we do know, for instance, there's some strong work going on at the City University in London, where they're looking at training Speech, Language Therapists in a particular sort of Solution Focused therapy, which is very well regarded as an evidence base. And that's provided by speech language therapists, with the right training and the right background, to develop the competencies and know how to manage risks, and so on. So, the Step Care Model allows people to see where they're at in terms of their scope of practice, when they're on or when, if they want to, what skills they might need to practice at a at a high level.   Jerry Hoepner: Yeah, that's really well, well explained. And that's actually a really nice segue into my next question, because I know, the Step Care Model that you presented back in 2016 identifies some specific psychological interventions. So, you talk about motivational interviewing, cognitive behavioral therapy and a number of other approaches. I'm just interested is their kind of a plan in mind or a process in mind that will help to identify other interventions and kind of where they fall to give mental health professionals, speech language pathologists, and other disciplines, kind of a sense of where those other interventions fall. So, things like dialectical therapy and so forth?   Ian Kneebone: Well, there's a range of therapies that we've found useful for people with, with mental health problems, and obviously, it's the application of those to people with aphasia that's the point of interest. And we do now have very promising work going on cognitive behavior therapy for people with aphasia, we've just completed a case series, which is just been accepted by Neuropsychological Rehabilitation, looking at modified CBT for people with aphasia, which is really exciting. We're doing stuff on behavioral activation, which is very promising for people with aphasia and relaxation therapy, we've just completed some case series work, looking at that. And that's really exciting because that was co-designed by people with aphasia, and then then then launched based on that very solid foundation. The more interesting or the very interesting work is being done on some of these, what we call third wave Cognitive Behavior therapies, which are things like Dialectical Behavior Therapy and Acceptance and Commitment Therapy, for instance. And a lot of that's been leveraged off the brain, the general brain injury literature now where people like Dana Wong, who's from LaTrobe University here has done some seminal work looking at modifying for people with cognitive and communication problems, Acceptance and Commitment Therapy. Reg Morris from Plymouth University in the UK has done some great founding to work with some of his PhD students and looking at Acceptance and Commitment Therapy for both carers and people with aphasia after stroke, you did mention before, it's easy to focus on, of course, the client or the patient with aphasia, but you know, the need goes beyond that, because the ripple effect of the, of the impact of the communication and, you know, the disabilities that commonly come with stroke as well goes to a person's social circle and familial circle, and including those people in therapy is, is an important part of the investigation as well. Absolutely.   Jerry Hoepner: It's so common, we have partners who are socially isolated as well, just because they're the primary communication partner for that individual with aphasia, and whatever restrictions to participation, they feel, right, it's just all connected.   Ian Kneebone: When I teach my clinical students, I often say like, you no, you've got an identified person who's been referred to you, but you've got to realize that nearby, there's going to be someone who's just as anxious and depressed, if not more so. But at that point, and that we do know, there's a reciprocity between anxiety and depression, that person with aphasia, and, and a significant care person. So, it's really important to include those people in therapy if you can, but being mindful of not including it in a way that adds to the significant burden and challenges. So it's got to be done in a really appropriate way without asking people for things that they're not able to provide, because they're just coping with things like role changes, financial issues, and you know, the loss of the person as the relationship they had with them on account of communication.   Jerry Hoepner: Absolutely. And, as you were talking about that, it makes me think about how that changes over time as well. So those initial kind of burdens, that might be a tough time for them to engage in those kinds of conversations, because like you said, they're just trying to keep their head above water and trying to make it through everything else, all those other role changes and additional roles they've taken on. But I wonder about your thoughts in the chronic phase as, as both the individual with aphasia and their partners start to make those adjustments, if maybe that's an opportunity for some of those interventions.   Ian Kneebone: Those often talk about that that phase is life after stroke. And that's usually about 12 months later, when we know pretty much how people's rehabilitation has proceeded. And people are pretty much aware of how they will be functioning on into the future. And as you say, I think there's a there's a sort of a crisis point when someone's having their stroke. And there's that kind of acute phase where people are adjusting, but the important thing at that time, people think well, my personal, my personal looking after, or I'm going to get better and so on. But it's when that realization happens. So, we find these sorts of emotional difficulties can occur early or later after, after a stroke, with or without aphasia, of course, and that, you know, it's important that people's needs be met, on into the future, the recovery phase in life after stroke. Because many people when we've done this in our qualitative interviewing and surveys by places like the Stroke Association, UK, that people often the 12 months, a lot of the care, a lot of the treatment or drops away. And then as we were talking about the feeling isolated, and well, this is all I'm going to get, and so on, people are really challenged at that time, and we need to be able to provide, you know, supports and therapies on into the future for those individuals. You know, depression, anxiety content, you know, is pretty consistent at any time after a stroke. And when we're really bad at predicting, I think, you know, who's going to be affected at what state so we're going to be going to be vigilant, and we have to be, you know, particularly vigilant, I guess, I'm probably preaching to the converted with your audience here, but that we know that people are anxious and depressed out of stroke effects, their functional outcomes, and including the communication outcomes and so on, you know, if somewhere, you know, I remember seeing someone with a with a swallowing problem and the Speech Language Service was very concerned about this. And they had a day of good mood, and they came to a day hospital party, and now reading these party pies like there was no tomorrow's person's actual ability to swallow. Now I'm not saying it wasn't about risk was altered by their mood state and that that goes across the continuum of the areas which speech language therapists are involved with. So really important for outcomes and not just mood outcomes. You know, being depressed or anxious is distressing in itself. But you know, the ability to make a difference to people's physical and communicaiton outcomes of addressing psychological issues is considerable.   Jerry Hoepner: Yeah, I like the way that you describe that as being so intertwined and interconnected. So, you can't just separate those pieces out and say, I'm dealing with the physiological issues right now. Now I'm dealing with the psychological or the psychosocial and emotional issues, because there's so interconnected and, and I want to go back to a point you made earlier, which is, so often people early on have that sense of I'm going to be this, it's, I'm not going down the road a year, I'm not going to be one of those people who needs this. So, I'm just going to, you know, nose to the grindstone kind of work through this right now. But it can pop its head up anywhere in that recovery. And, and I think there's some reality that sets in once some of those initial supports are taken away.   Ian Kneebone: I mean, one of the biggest challenges I've faced when I've been in in stroke rehabilitation, and working with Speech, Language Therapists is around when people are using compensation, being asked to use compensation, as a strategy for communication and kind of dealing with all that mean, I'm not going to get any better with my speech. And, and, and, you know, people get really angry, and it's their frustration, and so on, and there's, you know, therapists going to be blamed for it. So, there's a real, real strategy there for dealing with that, and, you know, working with people to retain, retain hope. But you know, being pragmatic with well, you're leaving the hospital, now, you're going to have to communicate there in the community, you want to get out and do some of the things or at least some of the things you used to then how are we going to do this? And how are we going to approach it? But yeah, it can be quite a crisis point.   Jerry Hoepner: And I Yeah, and I think part of our role as a speech language therapist in that context, is to communicate that really well in a way that doesn't set them up for oh, you're switching over to compensatory approaches that you that means you think that I can no longer improve, in terms of my abilities, but rather to convey this is one of several things that we want you to do to be more successful, and to continue to engage. That's, I mean, that's kind of for speech language pathologists who are supposed to be good at communicating those things. We don't always do a very good job of communicating those things. I was thinking a little bit about Deborah Hersch's work on transitions and discharges and how poorly we do and saying, This is what's going to happen. We've got these limitations of the system. But this is the plan, this is not something that you did wrong, this is something that we just need to work through. And when we, I think when we feel discomfort about conveying things like it's time to transition home, or it's time to transition out of therapy, that we don't do a very good job of explaining those things.   Ian Kneebone: Well, I've certainly worked with a lot of members of stroke teams, allied health and speech pathologists, but one of the one of the difficulties, of course, is when we feel uncomfortable about doing it, and it's not the news, people want to hear we kind of beat around the bush. And then when people aren't clear, and you've got people with cognitive and communication problems, it's kind of a perfect storm for it to go amiss. Yeah. So, I think one of the messages I give out is people think if they just communicate it really well, it'll all be fine, and it'll go work fantastically, and people will transition really smoothly. But it's a bit of a wakeup call to realize, however well you put it, this is sometimes news people don't want to hear, and that there's going to be a reaction to that. And just to appreciate that it's not necessarily your fault. But there's the reaction that is it is people becoming aware of limitations going into the future, not the not the recovery they wanted, but the recovery they've got and supporting someone through that is a challenge when sometimes, you know, you're the target of dissatisfaction.   Jerry Hoepner: Right? No, that's such an important point. Just being cautious of that as well. Because certainly, certainly that's an important thing to consider. I'm interested in the process of interprofessional collaboration with mental health professionals with psychotherapists. What are your thoughts on the best way to approach a collaboration or setting up a collaboration with a mental health provider rather than an “oh, this person's got needs beyond what I can provide? Take them off my hands.”   Ian Kneebone: It's just so essential. One of the struggles we've had is that you know many people in my own profession, which is clinical psychology will say, well that this person can't communicate, I can't provide them with therapy. And that's so disappointing because we know if we modify them, we can do that. But certainly, my clinical experience in collaboration is that, you know, working closely with a speech language therapist about the best ways to communicate with someone they've, you know, very thoroughly assessed, is really useful in allowing me to learn and, you know, I work in session with, with therapists, as well as you know, gaining assessments and information and talking to them about that before it. And really importantly, there's a lot of in the research we're doing about collaborating, particularly with collaborating, particularly with speech language therapists, to be able to do those sorts of prevention work and, and therapies we've, we've discussed. And that's been such a joy working with Amanda Lakute, and some other people on that work, and Miranda Rose's team in looking at optimizing mental health and wellbeing in designing, for instance, Jas Sekhon's work, we know, on teaching Speech, Language Therapists, you know, counseling skills, so that they feel competent to support people that first step on the ladder, but also dealing with how speech language therapists can obtain the skills. And also really importantly, this is bringing onboard people with aphasia, to the co-design work, to design things that we know will be effective with them rather. So, we're not doing things to people, we're doing things with people and looking at the best way of designing our interventions. And not just our research, but our clinical interventions, so that they translate well into the different environments, healthcare environments that we work in.   Jerry Hoepner: Absolutely, and kind of three really important points for a speech language pathologist, one, having that training to feel more confident and comfortable with actually carrying out those level one, psychological interventions, but also having training on how to teach mental health professionals how to interact. So, training those communication support strategies is a big part of our role. And if there should be something that we're comfortable with, we should be comfortable as speech language pathologist with training others on how to use those communication supports and   Ian Kneebone: Jas of course is a speech language therapist, Jas and she has got such a great course and such a nice way of delivering that in the speech, language therapy world that it's, it's so nice, and then people say, well, Ian, can't you go and teach us in counseling and like, you know, I'm happy to provide counseling training and different psychotherapies. But, you know, the role model that people like Jas provides in saying, well, this leads, not only can Speech Language Therapists use these therapies I can try and others in them because, but you also know, it's a competency within, within the scope of, of every practitioner really. Yeah,   Jerry Hoepner: absolutely. And, and I think sometimes we forget about that piece, kind of think it's a given that we're going to be able to train other professionals, but I think, also, there's a little bit of that uncertainty, when you're working with someone else about expertise and roles and territory and all of those things you might kind of back off in terms of providing the thing that you are the very, you know, what is your kind of bread and butter, your biggest strength in terms of teaching those things. So, I agree, Jas is fantastic, and the work that she's done in that area has been just so helpful and moving us forward from an educational standpoint.   Ian Kneebone: I guess as a psychologist, I kind of assumed a lot of that work would be the net training was available in courses but as we know, from the surveys and so on, but it has been a bit hit and miss despite the demands and like guidelines, like the Royal College in, in the UK, for people to have those roles, and then it's kind of I know, it's hard to fit everything into the into courses, because there's so much new material on different ways of intervening and assessing, but it's such a core skill that it's good to see that those who may have missed it on the way through that they're released post, you know, these master courses that provide people with to fill in that gap.   Jerry Hoepner: Agreed. And again, there's a lot of a lot of training that still needs to happen yet and a lot more changes to happen in the graduate student training programs for speech language pathologists as well.   Ian Kneebone: When I'm talking to you from Australia, of course, and we're no exception here despite you know the leading lights that we have in this country for speech pathology and trading and communication and counseling skills for people with aphasia we're still working on it here and I know from your surveys, that's still a challenge in the US as well. So, it's a piece of work in progress.   Jerry Hoepner: Yeah, it definitely is. At least there's some awareness of it. And we're starting to make a little bit of ground, I think in terms of awareness. And definitely when we have international programs for training, speech language pathologists and speech language therapists from a counseling standpoint, but also for working together collaborating on research internationally, I think that bodes well, for our future, I think we're moving in the right direction. I want to return.. Oh, go ahead.   Ian Kneebone: No, no, I'm just agreeing with you. So Oh,   Jerry Hoepner: Oh gotcha. I want to return to the other point that you made about codesign, with individuals with aphasia, involved in that process. And I might have you talk a little bit about the relaxation program that you co designed the calmer program and kind of how that was set up. And what you've learned from that?   Ian Kneebone: Well, we pretty much it's run by Rebecca El-Helou, who's a PhD about the completed a PhD with me, and she's done a range of work, including the Kalmer project, which is part of what we call REDS, which was Reducing Emotional Distress in Stroke program. And we just thought, like, you know, relaxation, it's, it's one of these things that we know works with the general population really well. And, but it's not offered to people after stroke generally, or wouldn't necessarily people with aphasia after stroke. And so one of the things we wanted to do by that is, you know, start developing the evidence base, and we thought, you know, really, there are all these great relaxation programs out there, but will they work with people with aphasia, I mean, the advantages, of course, they can be very communication life, because of the nature of the interventions, you know, which is about, you know, focusing attention, reducing autonomic arousal, using breathing and so forth. So, they can be very nonverbal. So, with you, this is eminently suited, and it's also something that could be online, it can be on your phone, right. And it's such a great thing in terms of accessibility. So we work with people with aphasia, because we thought like a lot of, despite the low level of communication required, that it may not suit everybody, we weren't going to assume that people with aphasia would, would take to it necessarily, and we're so pleased that we got a group I think about 10 or 11, people who were involved with us in looking and going through the, the sort of standardized programs, and then looking at how we could reduce down the communication, and how we could also, you know, just make it user friendly, and whether people needed to care or not to support them in, in getting them online to do it. And just really tightening up something and tailoring it to people with aphasia. So, we've got about two levels of communication, for instance, which people can dial up depending on their needs. And, you know, and while I say we will talk with people with aphasia, we also of course, include speech language therapists and  uh Brooke Ryan, you may have heard her doing her work, she's out in western Australia at Curtin University now doing a great job in, in looking at psychosocial work with people with Aphasia out there. And, you know, certainly it was gone, guided by all the current guidelines on supporting people with aphasia, not only to do the relaxation training, but to communicate their views on the relaxation training and how we might modify it to be more appropriate. So that was great. And we also have recently done behavioral activation study, there's just been a publication in Aphasiology about behavioral activation, which is an intervention, which, at its simplest, is a getting people re engaged with their environment, doing things that they enjoy that they've got mastery over, and they value. And also looking at how it can produce an online program that would support people once again, with or without a carer, to undertake that in a really accessible way assessing accessible communicatively but also because it's online, it's available at the time of your own choosing. And we're really lucky we may not be known as well internationally is in Australia, but we had a lot of work from the Black Dog Institute here, which is developed a lot of online programs. So, we also benefited from their huge expertise in this area, in, in developing something that we hope is going to be really great for people with aphasia and, you know, just get the resource out there. I mean, some of the work we've done is trying to get, you know, health services to be out able to offer treatments but you know, getting clinicians with the time. And you know, getting resources to do that is a real challenge. So, you know, we've got to go with where people may be able to access things themselves through Stroke Association, stroke, foundations, those sorts of things, where possible, so that we can get things out there and kind of like, circumvent all the problems of resourcing in the health community, which, you know, we've got a very different approaches to healthcare in the US and Australia, but the same, the same struggle in trying to get resources to people. And so, we're just looking across the board and how we can do that in this online stuff, particularly with the assistance of real experts, like Black Dog has been a great opportunity here. And we're just like, inevitably looking for funding for the next stage where we can roll it out and provide an evidence base to how useful this might be to people with aphasia after stroke. Jerry Hoepner: I think that's so useful. And I want to kind of make the connection between behavioral activation and the Life Participation Approach to Aphasia interventions that Aphasia Access stands for. And that's just such an important part of everything that we do from a life participation approach is increasing that participation, finding ways to get people reengaged in authentic, meaningful things that they care about. So, I want to make that connection. And the way that that might look for individuals could be part of a community group, it could be an aphasia camp like we offer, and I know that Linda Worrall's group started at a camp in Australia a couple of years ago as well. So they've got a couple under their belt, or, and I think I like this extension into the accessible online format that can reach as many people as possible, even if that's like the way that gets them into the loop, because I think it's hard initially to, to invest in going someplace or becoming a part of a group, things like that. But certainly, there's something to be said about once you're in and once you have that success that comes with having the right supports and having peers who understand you, then it's a little bit easier to take that next step, I think,   Ian Kneebone: Oh, absolutely. And like the across this kind of leisure rehabilitation is something our occupational therapies, therapists colleagues talk about, and the behaviors talk about environment enrichment and so on. And, you know, battle activations, all in that ballpark, and really important for people, as you say, it's certainly part of, you know, Miranda Rose and her team are doing work on community aphasia groups, which are kind of exciting, because they're led by people with aphasia, once again, because of the resources, issues that happens with, you know, trying to fund these sorts of activities. And, you know, there's, that's certainly an important part, and also meeting in the group, as you know, is a valuable, enjoyable experience, both in terms of the support from right from people, you know, looking at what other people are doing, and getting engaged with that, but also, you know, being on a similar journey, and the support that that can give to other people's is, is really valuable, I think, is as part of the process that leads to the positive experiences from those groups. Jerry Hoepner: Absolutely. And I, and I hope our listeners I got pretty savvy listeners, I hope they pick up on that connection as an important way to return to those meaningful activities and to have a positive effect on mood and other psychological domains. Ian Knebone: Well, watch this space because the works, you know, the initial works being done, but they're rolling it out in Australia, where they've just got some, some country-type areas involved in offering this training to people. So they've developed some really comprehensive training things for the materials for the people, the professionals that support this program, but also for the people with aphasia who lead the groups. There's a PhD should Kathryn Pettigrove, who, who you should get a podcast on, she's just amazing and excited about this work, and you may have seen her in the US recently, but such talks with such enthusiasm about it. So, I would recommend that to you and your listeners. And as the evidence comes out, and it's going to be a great model, I think for helping people to help themselves. Really.   Jerry Hoepner: Absolutely. And you're right, we definitely need to get her on this podcast. I'll write that down as soon as we're done, make sure that we follow up with that terrific point. (See episode 86) Episode #86: Making Aphasia Groups Work   Ian Kneebone: And she's just so enthusiastic, new energy coming into the, into this area, not that there's a lack of energy, but it's just nice to see that, you know, a few people hanging on the baton.   Jerry Hoepner: Absolutely. Yeah. It's great to great to spread that out. Because there's so much to do. There's no no lack of things to do in this area, for sure. I'm interested in your thoughts. You talked a little bit about Jas Sekhon, but your perspectives on training, both future speech language pathologists who are in their training programs and existing speech language therapists pathologist who are already working clinically in seeking continuing education. Can you talk about some of the keys from your perspective to making that education successful?   Ian Kneebone: The first step is, you know, there's still a little bit of work in saying this, you know, convincing people this is part of their role, because some people will, will think, Well, no, I just hand this over to the psychologists that I you know, I don't think we can, we can accept that but, but moving forward. With that, it's really integrating, you know, the right, you know, say step one type interventions like problem solving, behavioral activation, relaxation therapies, and so on, right in into training courses, because these, these are things that, you know, people say, what's a psychological therapy? How am I going to do that? Well, it because it's psychological therapy, it doesn't have to be done by a psychologist is the first point. And a lot of it's kind of manualized and fairly intuitive to professionals. And many people come and say, you know, problem solving, and I've been dealing with all these challenges in my life already. And this just makes such sense. I wish I'd kind of it just, I should have known this already. Because, you know, I'm a slight person, I've got a master's degree in speech, and language therapy. But you know, it's so useful to me as well, and handing over to my clients is just really great. I mean, we do know, there's some work that's been done in the UK looking about Peter Knapp and his colleagues at looking at problem solving as a prevention and, you know, really good RCT results on how that prevents, you know, psychiatric psychological symptoms after stroke.   Jerry Hoepner: Absolutely.   Ian Kneebone: So, I think it's just rolling out and getting people to be to get over their concerns about and Jazz Jazz program. If you would, then that's, you know, specific counseling skills, but also then add some of these other strategies in. And we've got some experience in doing that recently. It's with step care, Carolyn Baker, who's at Monash University here in Melbourne, has been doing some work with with both online and offline online because of COVID in rolling out these therapies with allied health practitioners, including psychologists, but also Speech, Language Therapists, and being able to do that, and the main thing is just the kind of the structural issues in, you know, adding to people's workload, and allowing the system to support the investment that will, you know, lead, as we say, not just to people coping better with things but also improve, you know, the functional outcomes after stroke. So, while that's been a bit of a mixed feast, in terms of, you know, outcomes, because it's just been so hard to get these systems to take on board the training and get, get the people through these very straightforward psychological interventions that we know will almost certainly benefit people. But we're doing that, as I say, a two-pronged approach, we're looking at the self-help co-design work that can go online and so on and be accessible that way. And also trying to, you know, train every day, healthcare workers in being able to provide these to people with aphasia.   Jerry Hoepner: Absolutely, and when you say, fitting in to people's schedule, or their workload, I mean, I just think that goes both ways, because not addressing these things really limit your outcomes in terms of, kind of, like you said, the communication outcomes are going to improve as those psychosocial outcomes begin to improve.   Ian Kneebone: You know, it's short sighted not to make this investment. But you know, doesn't mean it'll net. And so, you know, the logic doesn't necessarily follow, right. In terms of what happens with healthcare resources. And the other thing is, I guess, we're talking about all what suspects with therapists, fleet Language Therapists role is really important that not to throw the baby out with the bathwater is that, you know, like, if someone's communication can improve their depression and anxiety will improve as well. So, you know, as I often say, when I'm talking to training other allied health people, you know, we've all you know, you've all abandoned the session because someone said or stressed or upset and so on. But if you keep on doing that, something's got to change. You can either refer them on or do some collaborative work with somebody, but not, you know, not stopped doing the OT or the physio or speech language therapy, because you know, those things have to come along with as you were saying earlier, they're all joined up.   Jerry Hoepner: Absolutely, no, that's a, that's a really great point. And they all have to happen simultaneously to be effective, for sure. Ian earlier, you were talking about Carolyn Baker's work, her recent work, and I'm really interested in the low intensity psychotherapeutic interventions from the eDelphi study. Just wondering about kind of your thoughts on what the place is for those you mentioned occupational therapist, physiotherapist, speech language therapist. Ian Kneebone: This is Carolyn's most recent work, which is the last data we kept it in the middle of this year has been rolling out training to people, you know medical nursing, speech language therapists and also psychologists in kind of first level step care for people with stroke. So, people were enrolled in the program, and some was telehealth some was not. And they would then choose one of three therapies that they thought might suit them best. And that would be problem solving behavioral activation or relaxation therapy, and then they'd have seven sessions of therapy with that. So these were people who weren't necessarily psychological therapists, although some were providing, providing these sessions within a current health system that's operating day to day with the practitioners from the current health system, rather than you know, someone coming in and doing a great RCT. But then the resources disappear, and you go away, no matter what you prove, one way or the other. And that's been a real eye opener, I mean, that there were major challenges when we started that because of COVID, because so many healthcare workers, as I'm sure there were in the, in the US were, were redirected to other tasks to do with the epidemic. But we've soldiered on, and got that it's a really great learning experience to see. See how that went, how it was rolled out. And we've got one at a time and qualitative evidence that we're going through, it's starting to sift through at the moment to look at what we can really learn from that project about how we do this going forward. I mean, I do not at the moment, it's just that that redirection of resources, particularly under COVID, was so difficult. And that was perhaps a unique time. But the resources, as I was saying earlier, are always under scrutiny and precious. So, right. It's about I think, partly getting the evidence base and so on. So we were talking about relaxation therapy recently. And I've got the irony of people saying, well, you know, you put it in a grant application to do to demonstrate the treatment efficacy, and people said, well, it's relaxation therapy, why wouldn't work? Of course it will work. And then, and then the people say, well, we can't put it in policy, because there's no evidence base. So you kind of you know, it even the same, the in the same grant round. Yeah. And so we're just doing it anyway, we're doing it with PhD students, we're doing it with, you know, startup resources that Miranda Rose in the Center of Research Excellence in Aphasia Rehabilitation in Melbourne have got hold of for us. And we're going to demonstrate the usefulness. So, people will put it in their guidelines and so on. And then the UK National Stroke guidelines, say all this great stuff about some relaxation training, we do the same, but there isn't sufficient, not sufficient numbers, significantly power to demonstrate efficacy and so on. I'm just really grateful they mentioned some of Vaour work. But then I kind of have well, yes, but and, you know, that means it's not rolled out. I used to work in a stroke rehabilitation word in Vatum, in the UK, and we had a number of Allied Health assistants, you know, physiotherapy assistants who've gone off and done all this training in how to do relaxation with people that didn't get any time to provide. So it's kind of like, oh, gosh, you know, it is hard to, sometimes to, to get this happening. But you know, I think there is saying that, but there is kind of a, it's a right time. And you were talking to me before about, you know, five, you know, psychosocial guidelines for people with aphasia, and so on that were being developed. And I think the more that we do that, the more the ability will be there to leverage those resources to people who need them.   Jerry Hoepner: Agreed. I think that is a really good place to start to wind down our conversation because I think we're moving in the right direction. Still, still plenty of work to do, but I'm wondering, kind of as a as a summary are there are two or three things that you think speech language therapist, working with people with aphasia should keep in mind from a psychological intervention standpoint, and what's a good starting point?   Ian Kneebone: Well, I think it's probably the three things I do is like, you know, take it on as part of your work to be aware of these, these these issues and try not to shy away from As tempting as that may be. So, the first thing is, you know, there are good instruments for now that we have screening for anxiety and depression so you can pick those up and they're well within your skill base to use. And then getting the skills and training and things like counseling if you don't have them already, or you don't feel confident in using them, and then getting access to some of these other things. So like Caroline's work, you know, we're hopefully the publish the manual shortly that can guide people, speech language therapists in using those treatments. So that will be something that's out there and a resource that people can use. And once again with it well within the competence of, you know, speech language therapists. And I think finally, you know, just using the great communication skills you've got, even when you're sort of giving people difficult news to receive that. And just being as clear as you can be, you know, how to do the communication. And, you know, kind of accepting people are going to be frustrated. But, but giving it the clarity and the justification in a way that retains people's hope for further recovery but it's pragmatic, to get them functioning as well as they can in the community, because that's so much of the key to people going forward.   Jerry Hoepner: Absolutely. And that's, that's our whole goal to get them reintegrated as much as possible.   Ian Kneebone: So, awareness, skills, communicating effectively regarding the difficulties and the challenges.   Jerry Hoepner: Excellent summary. Well, Ian, it's been fantastic having this conversation. Great to have it again, I don't remember exactly how many years ago we talked. But it's great to have that follow up conversation. And I know our listeners will really enjoy this conversation. So, thank you for being here today.   Ian Kneebone: I'm more than happy to help out and thanks for all the speech language therapists who have contributed to my work. I wouldn't be here without them. And it's great to see this interprofessional learning moving forward. If I hadn't missed out any of the great people I've worked with, I do apologize. But there's just too many of you now, which is part of the success story.   Jerry Hoepner: Yeah, that's a good problem to have. Well, thank you again. Goodbye.   Ian Kneebone: Thanks, Jerry.   Jerry Hoepner: On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.   Resources: El-Helou, R., Ryan, B., & Kneebone, I. (2023). Development of the “Kalmer” relaxation intervention: co-design with stroke survivors with aphasia. Disability and rehabilitation, 45(9), 1517-1529. Kneebone, I. I. (2016). Stepped psychological care after stroke. Disability and rehabilitation, 38(18), 1836-1843. Morris, R., Eccles, A., Ryan, B., & Kneebone, I. I. (2017). Prevalence of anxiety in people with aphasia after stroke. Aphasiology, 31(12), 1410-1415. Ryan, B., Bohan, J., & Kneebone, I. (2019). Help‐seeking and people with aphasia who have mood problems after stroke: perspectives of speech–language pathologists. International Journal of Language & Communication Disorders, 54(5), 779-793. Ryan, B., Kneebone, I., Rose, M. L., Togher, L., Power, E., Hoffmann, T., ... & Worrall, L. (2023). Preventing depression in aphasia: A cluster randomized control trial of the Aphasia Action Success Knowledge (ASK) program. International Journal of Stroke, 18(8), 996-1004. Sekhon, J. K., Oates, J., Kneebone, I., & Rose, M. (2019). Counselling training for speech–language therapists working with people affected by post‐stroke aphasia: a systematic review. International journal of language & communication disorders, 54(3), 321-346. Sekhon, J. K., Oates, J., Kneebone, I., & Rose, M. L. (2022). Counselling education for speech-language pathology students in Australia: A survey of education in post-stroke aphasia. Aphasiology, 36(12), 1417-1446. Sekhon, J. K., Oates, J., Kneebone, I., & Rose, M. L. (2023). A phase II randomised controlled trial evaluating the feasibility and preliminary efficacy of an education program on speech-language pathologist'self-efficacy, and self-rated competency for counselling to support psychological wellbeing in people with post-stroke aphasia. Topics in stroke rehabilitation, 30(8), 842-864.

Interviewer info Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic conditions. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer. In this episode, Lyssa Rome interviews Teresa Gray about creating equitable services for people with aphasia who are bilingual, non-English speaking, and historically marginalized groups.   Guest info Dr. Teresa Gray is an Associate Professor in the Department of Speech, Language, and Hearing Sciences at San Francisco State University, where she directors the Gray Matter Lab. Teresa's research aims to improve aphasia health care outcomes for historically marginalized populations. Her research interests include bilingual aphasia, the mechanisms of language control in aphasia, and the role of language rehabilitation and its short-term and long-term effects on functional communication. Her team is working to develop evidence-based treatment methods for non-English speaking persons with aphasia, as well as bilingual persons with aphasia. In addition, the Gray Matter Lab hosts identity-based conversation clubs. The goal of these groups is to increase quality of life for the participants, and the lab is starting to examine why these groups are so meaningful to the participants.   Listener Take-aways In today's episode you will: Understand why careful listening is important when working with bilingual and non-English-speaking people with aphasia and their families. Describe how speech-language pathologists can tailor their treatment to meet the needs of bilingual people with aphasia. Learn about identity-based aphasia groups. Edited transcript Lyssa Rome  Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California, and I see clients with aphasia and other neurogenic communication conditions in my LPAA-focused private practice. I'm also a member of the Aphasia Access Podcast Working Group.   Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Dr. Teresa Gray, who was selected as a 2023 Tavistock trust for aphasia Distinguished Scholar, USA and Canada. In this episode, we'll be discussing Dr. Gray's research on aphasia treatment for bilingual and non-English speakers with aphasia, as well as identity-based aphasia conversation groups.   Dr. Teresa Gray is an associate professor in the Department of Speech, Language, and Hearing Sciences at San Francisco State University, where she directs the Gray Matter Lab. Teresa's research aims to improve aphasia health care outcomes for historically marginalized populations. Her research interests include bilingual aphasia, the mechanisms of language control and aphasia, and the role of language rehabilitation and its short-term and long-term effects on functional communication. Her team is working to develop evidence-based treatment methods for non-English-speaking persons with aphasia, as well as bilingual persons with aphasia. In addition, the Gray Matter lab hosts identity-based conversation clubs. The goal of these groups is to increase quality of life for the participants. The lab is starting to examine why these groups are so meaningful to the participants. Theresa Gray, welcome to the Aphasia Access Conversations Podcast. I'm really glad to be talking with you.   Teresa Gray Thanks so much, Lyssa. It's great to be here today.   Lyssa Rome So I wanted to start by asking you what led you to study bilingualism and aphasia?   Teresa Gray Sure, that's a great question. So, you know, really it was about curiosity. And so when, when I finished my master's in speech language pathology, I was working in Los Angeles at Rancho Los Amigos National Rehabilitation Center. And I was working alongside a phenomenal group of speech language pathologists and a rehabilitation team, and it was just a wonderful experience. And a lot of our patients were bilingual. Some people were monolingual, non-English speakers. And it was just a situation where I was learning more and more about how to treat this population that may not speak English, even though a lot of our aphasia materials are based on English speakers. And in addition to that, I was curious to know more how does language present after stroke? If someone is a simultaneous bilingual versus a sequential bilingual, does that affect life after stroke? What about proficiency? What about language dominance? What about age of acquisition, all of these issues that go into language presentation—I was very curious about, and there wasn't a lot of research out there. And so, of course, as SLPs, we read the literature, and we really want to know, what is best practice.   So when I decided to go back for my PhD, I decided I wanted to go study with Swathi Kiran, who is a leader in the field working with bilingual adults with aphasia. And so I had that opportunity. And I moved from Los Angeles to Boston to go study with Swathi. That's when I really dove into learning more about cognitive control and what that looks like as far as like language control, and how that interacts with cognitive control and how that's represented in the brain, and what that means for our patients.   Lyssa Rome    And since then, I know you've moved into treatment. Can you say a little bit more about that?   Teresa Gray    Yeah, absolutely. So after it, yeah. So after Boston, I accepted a faculty position at San Francisco State University. And I continued with the cognitive control work. But that's when I realized, yeah, that's fascinating work. Because it's really better. It's getting to know it's learning more about the brain. And I think that's so important. It's so fascinating.   But I think what's also important with our patients is how does the rubber hit the road? How are these people, our patients and their families and caregivers, and the stakeholders, how are they affected by the aphasia? And what does that look like? And so that's when I started, I expanded my research agenda and the program, and I teamed up with Chaleece Sandberg. She was already working on ABSANT, which is abstract semantic associative network training. And that's a treatment that if you train concrete words, they get better. But if you train abstract words, they get better, they improve, but we also see generalization to the untrained concrete words.   So when she and I started talking about it, and you know, I bring the bilingual piece. And so we really wanted to develop a bilingual version of ABSANT. And the idea here is that when you treat the dominant language, it improves. But if you treat the non-dominant language, it improves, but you also see cross-language generalization to the untrained dominant language. And as we progressed through these this work, we really we started to realize that it's not just spreading activation that supports the cross-language generalization. There's this level of cognitive control.   So to achieve the cross language generalization, we're seeing that not only do you treat the non-dominant language, but patients also need to have intact cognitive control mechanisms at play. So the direction we're moving in is that if we have patients that come to the lab for bilingual ABSANT, we also make sure that we administer some of the nonverbal cognitive control tasks to get a sense of how they're processing that information, because that informs how we interpret the ABSANT performance.   Lyssa Rome It sounds like really interesting and important work. And we we've interviewed Chaleece Sandberg on this podcast. I'll put that link in the show notes. Can you can you say more about bilingual ABSANT and what you've learned?   Teresa Gray Yeah, sure. So what we've learned, like one aspect that we've come across is that just like, one size doesn't fit all is the same with therapy. And it wasn't before too long that we realized that this bilingual therapy isn't a great fit for all patients. And I'll tell you what I mean, like most bilingual therapies, we're treating patients within monolingual contexts. So you'll treat English and then you treat Spanish.   In my lab, one of our goals is we're really trying to be as inclusive as we can. And if a patient comes to us and speaks a language combination, let's say Russian and English, we think about do we have resources? I mean, do I have students available to administer the intervention? Can we norm the stimuli and I've been fortunate enough to have many bilingual students who speak a variety of language combinations. And being in California, most of my students speak English and Spanish, but I've also had Polish-English combinations Chinese-English, Russian-English and a few others.   What I'm getting to is that a few years back we had a Tagalog-English English speaking patient, and a very motivated student who wanted to administer bilingual ABSANT. And what we found was that during the English phase, it went as usual but during the Tagalog phase, both patient and clinician reported that it was just, you know, quite frankly, it was weird not to code switch, and it felt constrained and unnatural. And so really the logical next step was to think about, well, really to question, why are we delivering a bilingual therapy in a monolingual context, we shouldn't be doing something where it's more of a code switching based therapy that really fosters the communication that the patient needs.   So this was a few years ago, and at the time, we didn't have the bandwidth or resources to address this. And unfortunately, that's how research functions—it's really about capacity and resources. But now here we are, and last summer in 2023, we did start norming our Tagalog data set, and to really move forward with this, a truly code switching, or as some folks are calling it translanguaging, like this new, another phase. So we can actually look at what is most beneficial for these patients who are code switching in their natural environments. And so thus far, we have run one patient who has who has gone through this translanguaging experience. And we're quite fortunate to have two more patients on deck. And so we're pretty excited about this.   Lyssa Rome  Yeah, that's really exciting. And I think on this podcast, we talk a lot about life participation, the life participation approach is about making therapy as real to life as possible, and I think what you're describing is targeting therapy to the way that people actually use language. Whether you call it code switching, or translanguaging, the way we deliver therapy to people who are bilingual or multilingual should mirror in some way, their experience of speaking more than one language. Am I getting that right?   Teresa Gray  Yeah, absolutely. And I think it also touches on you know, I think it's important that we listen to our patients, other clinicians, family members, and if you're working with students, listen to your students. For quite some time, my students have been asking about non-English interventions for aphasia. And we all know that the majority of aphasia interventions are based on English speakers. But the thing is, if we're simply adapting English aphasia interventions for non-English languages, does that create treatment resources that are culturally and linguistically appropriate?   Now, regarding the cultural piece, oftentimes you can choose stimuli to be culturally appropriate. But what about the linguistic aspects when you take a treatment and simply adapt it to another language? And I think it's important that we stop and think about this issue. And I'm in a situation where my students are thinking about social justice issues within the field of speech pathology, and we're thinking about patient access to services, and what those services are, and are they equitable across diverse linguistic populations?   Lyssa Rome It seems like you're talking about really listening to and understanding and asking the right questions of all of the stakeholders—the students, the clinicians, and, of course, the people with aphasia. And, as we were preparing for this podcast, you talked with me a little bit, and I was really interested in what you had to say about, the importance of understanding client's language history and how they use language. And you had some ideas for how to elicit more information about that. Would you mind sharing that for a moment?   Teresa Gray Well, one thing I've learned to ask, and I learned this from Maria Muñoz, who's down in Los Angeles. One thing I think it's really important is how we ask questions to our patients and their families. And so rather than asking someone if they're bilingual, which can be a loaded question, and people interpret it in different ways, because some folks think, well, to be bilingual, you need to be highly proficient in both languages. But really, that's not the case, right? Like, we want to know if people have exposure or if they use a language other than English. And so rather than asking you, if someone's bilingual, you can say, “Do you speak another language other than English?” Or “Do you understand another language?” And then people really start to open up.   Another important way to ask questions is, you know, who are you directing your question to? Are you asking the person with aphasia about their needs and what they want to do, versus the families? Sometimes families will say, “Our 24/7, caregiver is speaking Tagalog.” Let's say you're Spanish, so they really need to speak Spanish, but maybe the patient wants to get back to their, you know, a club or something, you know, some social group that they're a part of, and they want to practice a different language.   So again, you know, the language history, the way we ask questions, I think it's quite important when we're gathering information so that we can develop, you know, these rehabilitation programs for patients.   One way that we're addressing equitable services in my lab is that we've thought with my students and I we've thought about going back to the original ABSANT. So original ABSANT was developed for English monolinguals. And we decided to push ahead with a Spanish monolingual version. And this is quite important in the United States. This population, Spanish speakers, are growing, especially in certain areas, of course, in California. We really wanted to see we're assuming that ABSANT can be adapted to various languages. And theoretically, it should make sense. But I think it's important that we have the data that shows it. And so we've in this past year, we've started collecting data to actually show that yes, it is effective, because I think as conscientious clinicians, and in our profession, we talk about best practice. It's important that we show it. And so, moving forward, this is what we're doing and we're quite thrilled that we have the resources and the opportunity to move forward with this type of a project.   Lyssa Rome It sounds like you're describing how equitable services starts with research that's more inclusive and is itself more equitable.   Teresa Gray Absolutely. And I think it also it reminds me of how do we capture improvement? How do you measure success? Because right now, when we're doing research, or right now, when we're doing research, and also clinicians out there in the field, we talk about data collection, right? How are you measuring improvement? And for us in the lab, we're looking at effect sizes, but sometimes these effects sizes aren't significant. However, the patient reports that they feel more comfortable, and they're more confident at family gatherings, or out in the community, and that maybe they won't ask for help at the grocery store, but if they need to, they're not scared. And I think that is so I mean, that's invaluable. But how do you measure that? And how do we incorporate that into our data collection? And how we report improvement to the funding sources? Right? Because all of us I, you know, you can't get very far when without talking about insurance dollars and how we measure improvement to get more services for our patients.   Lyssa Rome I think that that's, that's absolutely true. And I think we have to measure what's important to the person that we're that we're working with. I, I also wanted to talk with you about the identity-based conversation clubs that you have been working on at San Francisco State. Can you say a little bit more about those?   Dr. Teresa Gray Yeah, sure. So we do have a few different groups, conversation groups, through my lab. And one group, it started out as just a service to the community. And so we started an English-speaking group. And at first a few years back, we were in person, but we transitioned to Zoom once COVID hit, I was very impressed with my team, because here in California, when things shut down in mid-March, within three weeks, the group was online.   Around that time, maybe a few years ago, we started talking about a Spanish-speaking group, we do have many bilingual patients who are Spanish-English bilinguals, a few of these folks are more comfortable speaking in English. That's their emotional language, and it's their human right to use that language to communicate. So my lab put together a team to start hosting a Spanish-speaking group. And what we've seen is that there's just a different dynamic, when you're speaking in the language that you're most comfortable using. Jokes are different. Chit-chat is different. And we found that patients report a great appreciation for the Spanish-speaking group. In addition to the Spanish conversation group, we also have a Black conversation group that's facilitated by Black student clinicians. This group was started back in January of 2022.   Lyssa Rome And we spoke with some of the members of that group on this podcast and I'll again, I'll put the link to that in our show notes. And they were the people who participate in that group. Some of the members of that group had a lot of really positive things to say about how meaningful is had been to them to be amongst other Black people who share their experience. So maybe you can say a little bit more about that group?   Teresa Gray  Yes. So this group, it was started based on public interest. So one day in 2021, I received a phone call from a woman whose father had suffered a stroke. And she said to me, my dad is Black. He frequently attends aphasia groups. But the majority of people are white, where's the diversity? She was essentially asking, Where's the diversity? We know Black people are having strokes. But where are they? And what resources are there for people of color who have strokes? And of course these are important points that she's raising. And, in fact, leading up to this woman's call, my students and I were, we had been talking about starting this type of a group, but I wasn't sure if there was interest.   But that being said, we know when we look at health disparities, and we look at the data, we know that Black people have as much as a fourfold higher incidence of stroke than their white counterparts. But Black people are less likely to receive rehabilitation services. And that's just not right.   I have, you know, in this group, like you were saying, lists of people are so appreciative, and they're so interested, and they just really value this group. And I've had some of these patients who have said to me, Look, it was the summer of Black Lives Matter, people were getting murdered in the streets, people were rioting, and there was this national discourse going on about it. And they wanted to talk about it. But their aphasia conversation groups, were talking about the weather, or sports or the things that just seemed inconsequential at that time in their lives. And I think this just gets back to the importance when we think about identity groups—what they are for these people with aphasia, and how do we facilitate and coordinate them? And especially, you know, when the majority of SLPs are white and monolingual? How do we step into this arena? And how do we support and how do we, how do we move forward with these, you know, with these groups that are so valuable and meaningful for people with aphasia? Yeah.   Lyssa Rome I mean, I think it's incredibly important work. What have you learned about some of the best practices?   Teresa Gray  Sure, yeah. So I think it's all about, you know, being open and listening, but also learning how are you an ally? How do you ask questions? How do you make yourself vulnerable? Because if you're not sure about something, you want to ask. And, you know, sometimes with these groups, we've all left groups or situations where we reflect upon like, “Oh, I said, I said something—was that appropriate? I don't know.” But again, it's making ourselves vulnerable, and asking you to going back to the group next week and say, “Hey, I heard this, or I said, this, was that appropriate?” I think it's just being comfortable with this kind of discourse. To get there, it just takes practice, which just is, you know, going through the motions and doing the work and going through it and experiencing it.   Lyssa Rome It seems like that's something that you've really prioritized within your lab and with your students and in your work.   Teresa Gray  Yeah, and you know, and we make a point to talk about it, we talk about what it looks like, how it feels, and sometimes those are hard conversations to have. There's literature out there. There's different resources to lean on. But it's definitely I mean, we're all learning as we going as well as we're going and I think it's about having just being reflective, which which can be challenging. But I think that I think as we come through to the other side, we're growing and it's this bi-directional growth, whether it's me and my students, us and the patients, the caregivers, just having these honest conversations because I think our goals are the same, right? Our priorities are to improve quality of life. And and that's essentially what we're doing.   Lyssa Rome  Coming back to bilingualism, I'm wondering if you have any additional thoughts or advice about use of interpreters, or thoughts for bilingual clinicians? How can they best work with and support people with aphasia? Who are also bilingual? Or who are non-English speaking?   Teresa Gray  That's a great question Lyssa, because many of us, many of SLPs are not bilingual. And quite frankly, even if you are bilingual, you may not speak the language of that population where you are working.   So it's so important that we partner with our interpreters. And know knowing who they are at your site. And this is tricky, because when we talk about this, one recipe isn't for everyone, because all sites are different. The way interpreters are set up in one hospital differs from the next hospital. So you need to know your system and then figure it out. Because if you want to start a conversation group, and you don't speak that language, you're gonna have to team up with the interpreter. And, and I think my advice now is, you know, it's not just about asking the interpreter about that culture or language, it's about doing your homework.   So for instance, if you have Spanish-speaking groups, it's important to know what countries your patients come from. And this is valuable because holidays vary across countries, and even within countries holidays and traditions will vary. So you know, when these and these variations can feed into your group discussions. So for instance, around the holidays, people can share what they do with their families, what foods do they eat, how do they celebrate? Last year, we had a Spanish-speaking group, and it was around the Fourth of July. And so rather than talking about the US Independence Day, each participant shared what their country's independence day looked like, and growing up what their traditions were. And people really enjoyed that type of activities.   As clinicians, learning about cultures, is so important. I know SLPs, you know, your time is so valuable, right? Like, our caseloads are high, but we can learn bits of information, talk to interpreters, explore topics, and then have activities. And if we go into it with open, you know, just creating a safe space where we're all learning, I think it creates this environment where people feel welcome, and they're comfortable. It's a positive environment when you have an SLP, who may not speak the language, but you have an interpreter who does. And then the participants, of course, they speak that language as well.   Lyssa Rome  It reminds me of what you were saying earlier about the importance of careful listening to the people that we're working with, including interpreters, right, but also particularly the people with aphasia, who we're serving. Are there any other best practices that you want to share for SLPs who are working with historically marginalized populations of people with aphasia?   Teresa Gray  Well, I think at the end of the day, it's important that when we go into these environments, thinking about what materials are we using? How are people responding? And creating a space that if we have open eyes, we're open to suggestions. It creates an environment where people are comfortable to share, and, and then even when people give feedback, we can also improve our practice.   Lyssa Rome I think that that's at the heart of what we aim to do as, as people who believe in the life participation approach. So thank you for that. I'm wondering as you look ahead, what's on the horizon for you in terms of your research in terms of your work in your lab? Can you tell us a little bit about, about what you're working on now, or what you're looking forward to working on?   Teresa Gray  Well, one thing on the horizon that we're quite excited about is with our Black conversation club, it has had such a great reception, and the participants are so thrilled to be there, that we really want to dive deeper, and take a look at what makes this group so special. And so we're ramping up now, hopefully we'll be starting soon. I'm partnering with Jamie Azios, who's in Louisiana, and her expertise is in conversation analysis. And so we're teaming up to start looking at the Black conversation club, to look at the discourse and try to figure out well, what are the themes? What is the secret sauce? What is the special sauce that makes this group so powerful?   Because I think, you know, when when we have the when you know, when you have data that shows that, and we can write about it and share it with our colleagues, I'm hoping this will inspire and give more of a foundation platform for our colleagues to start groups like this. Because if you have a research paper out there, it's something to hold on to. And it's something to really say like, look, this is effective. And it's worth it's, you know, it's so meaningful and valuable that we should be starting groups like this and other places as well.   Lyssa Rome   Absolutely. I agree. And I really look forward to that research. I think it's so important. So thank you for doing that work. Dr. Teresa Gray Thank you so much for your work, and for coming on the podcast to talk to us about it. I really appreciate it. It's been great talking with you.   Teresa Gray  Great, thanks so much.   Lyssa Rome And thanks also to our listeners. For the references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org Thanks again for your ongoing support of Aphasia Access. For Aphasia Access Conversations, I'm Lyssa Rome.   Links Gray Matter Lab at San Francisco State University Jamie Azios — Aphasia Access Conversations Podcast episode (Second episode) NAA Black Americans with Aphasia Conversation Group — Aphasia Access Conversations Podcast episode Chaleece Sandberg — Aphasia Access Conversations Podcast episode Article: Beveridge, M. E., & Bak, T. H. (2011). The languages of aphasia research: Bias and diversity. Aphasiology, 25(12), 1451-1468. Article: Gray, T., Palevich, J., & Sandberg, C. (2023). Bilingual Abstract Semantic Associative Network Training (BAbSANT): A Russian–English case study. Bilingualism: Language and Cognition, 1-17. Open access: https://www.cambridge.org/core/journals/bilingualism-language-and-cognition/article/bilingual-abstract-semantic-associative-network-training-babsant-a-russianenglish-case-study/9B7FD1EDBDAB6FD042CD4714E1548005 Article: Sandberg, C. W., Zacharewicz, M., & Gray, T. (2021). Bilingual Abstract Semantic Associative Network Training (BAbSANT): A Polish-English case study. Journal of Communication Disorders, 93, 106143. Article: Gray, T., Doyle, K., & Rowell, A. (2022). Creating a Safe Space for Black Adults With Aphasia. Leader Live. Open Access: https://leader.pubs.asha.org/do/10.1044/2022-0614-black-aphasia-group/full/    

I'm Ellen Bernstein-Ellis, Program Specialist and Director Emeritus for the Aphasia Treatment Program at Cal State East Bay and a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's hosts for an episode that will feature Jocelen Hamilton and Theresa Yao from Stanford Healthcare. We will discuss how adapting the A-FROM to swallowing disorders can offer a person-centered approach to assessing and treating a person with dysphagia.   Guest Bios     Theresa Yao is a licensed speech language pathologist at Stanford healthcare and a lecturer at San Jose State University. Her clinical and research interests include head and neck cancer rehabilitation, voice disorders, dysphagia, and aphasia. She is passionate about serving people from diverse backgrounds with communication and swallowing disorders. She was a fellow for life of the Albert Schweitzer Fellowship program, and co-founded the Bay Area's Swallowing Support group. She has been actively volunteering in community groups for stroke survivors who need communication support. She has always been a strong advocate for her patients and profession. Jocelen Hamilton has practiced as a licensed speech language pathologist for 19 years. She specializes in management of communication and swallowing disorders in adults with head and neck cancer. She began her career at the University of Iowa Hospitals and Clinics, and then joined the Stanford Outpatient Head and Neck Clinic in 2020. She also previously served as a clinical assistant professor for the University of Iowa's Communication Sciences and Disorders department with a focus on supervising graduate students and helping individuals with strokes and brain injuries. Her current clinical interests center around the development of frameworks to facilitate whole person care for individuals with swallowing disorders.   Listener Take-aways Think creatively about how to apply the A-FROM to other communication disorders, like swallowing Learn how dysphagia can impact the participation, environment and personal domains Consider some PROs that help to capture the impact of dysphagia on quality of life of both the patient and the caregiver Explore some ways to adapt EMRs to incorporate A-FROM or Swal-FROM into your daily notes Show notes edited for conciseness and clarity Ellen Bernstein-Ellis So I'm excited to have both of you here today. Thank you and welcome, Theresa.   Theresa Yao  00:55 Thank you, Ellen. I'm glad to be here.   Ellen Bernstein-Ellis  00:57 And Jocelen you too.   Jocelen Hamilton  00:59 Yes. Thank you so much for having us.   Ellen Bernstein-Ellis (Interviewer)    Welcome both of you, again, to this podcast. And as our listeners get to know you, we like to open with a fun icebreaker question. I'm going to pose two different questions that you've selected for today. So, Theresa, let's start with you.   I guess for full disclosure, I want to admit that, I will share--I don't have to admit, I am sharing that I had the honor and pleasure of being your supervisor at Cal State East Bay in the Aphasia Treatment Program (ATP). So I know that may come up today. I just want to let our listeners know that we've known each other for a while. I have been really fortunate in that relationship and seeing you emerge and thrive as such a wonderful contributor to our field.   So Theresa, could you please share one experience or role that has been meaningful to you as an aphasia ambassador?   Theresa Yao  03:22 Thank you, Ellen. It was great experience when I was in the Aphasia Treatment Program at Cal State East Bay. So that's actually one of the experiences I wanted to share as an opening, because I was at the Aphasia Treatment Program as a co-director for the choir, Aphasia Tones. And that was one of the best memory in my life. And I remember one time, one of our members who had more of a severe expressive aphasia, and usually has minimum verbal output, and we all know him. But whenever he starts singing, Can't Help Falling in Love, this particular song, you can hear that those beautiful words just came out right out from his mouth, fluently, beautifully. He was always so happy every time that he heard the music, and he just enjoy singing along.   That was just a really amazing moment for me to realize that people with aphasia with minimum verbal output, they can still enjoy and participate in choir, and can still communicate that way. It's just showed me how powerful it was to use the Life Participation Approach to Aphasia. And in our choir at that time, we have all different levels of severity. All members join together, and then they all enjoy and engage in this choir experience. So that's really meaningful. Whenever I think of LPA, I think of him, I think of this song, and I think of Aphasia Tones.   Ellen Bernstein-Ellis  04:54 Thank you for sharing that. And Theresa, it was wonderful to have you as a co-director. And see you step up to the challenge of leading the choir. And you're right, we really have a strong motto of participation at every level. And you really worked hard to make sure that happened. So thank you for sharing that. And yes, that's one of my favorite topics, so I loved hearing about that.   And Jocelen, I'm also excited to ask you to share with the listeners something about one of your experiences. So would you like to share an Aphasia Access, favorite resource or moment? What comes to mind for you?   Jocelen Hamilton  05:28 Yes, well, this is really neat for me to be on this podcast, because it is this podcast that is a favorite of mine, and a major “aha” for me.   Ellen Bernstein-Ellis Well, thank you, just thank you.   Jocelen Hamilton I worked with patients with head neck cancer for about nine years. I then did a major shift and then worked in a graduate training clinic at the University of Iowa. And during that time, previously, when I was at the hospital with a very heavy caseload and working with individuals with dysphagia. And so then switching over and working with individuals with strokes and brain injuries, that was much more communication focused.   And I had this caseload I was taking over with the graduate students and learning about all the current treatment principles and treatment options and all the research that had been developed. It had been probably close to 10 years since I had worked regularly with individuals with neurogenic communication disorders.   I had knew nothing about LPAA. I knew nothing about Aphasia Access, the organization. And I was thinking about this recently, of how I even came across it. But I think probably I was searching one of these treatment modalities, and a podcast came up. So I listened to some of the other podcasts and I was like, oh my goodness, this totally resonated, LPAA. And the podcasts and other resources through the website, totally resonated with me, and helped me better understand what my frustration was within an impairment only based approach, which was in my training and my background, and things like that, to like see a whole different way. So I learned as much as I could. And I tried to share all of that with my students, we were all learning together of how to implement this. So it's really neat to now be a part of this podcast and participate.   Ellen Bernstein-Ellis  07:32 We're so glad you agreed. And I just want to thank you. If there was ever a wonderful plug for membership to Aphasia Access, I think you just gave it. Thank you so much. for that.   Well, let's dive in a little bit more to our topic of the day. We're going to be talking about how and why you both decided to adopt the A-FROM or the Framework for Outcome Measurement of Aphasia by Kagan and Simmons-Mackie to your work with head and neck cancer patients. So I know we usually focus on aphasia, but we're taking this really important tool and talking about how you adapt it. So many listeners are, of course already familiar with the A-FROM. But can you briefly describe the social model framework for our listeners?   Theresa Yao  08:16 I can start with just a brief introduction. I think everyone, if you're listening to this podcast, you are already very familiar with A-FROM, which is based on the World Health Organization's ICF model. They address a few health and social domains such as body structure, function, activities, participation and contextual factors like personal and environmental factors. And like Ellen mentioned before, Dr. Kagan and colleagues, adapted this ICF model to create a very user-friendly framework for the outcome measurement in aphasia. And this becomes the Living with Aphasia Framework Outcome Measures the A-FROM and it has the domain of aphasia severity, which is the body function or impairment level, and then also participation, environment, personal factor. So these are the core concepts of the LPA approach. Thats what we are based on using this A-FROM to adapt it to this Swallow-SWAL-FROM, we call it. The Living with Swallowing Difficulties framework of measures.   Ellen Bernstein-Ellis  09:22 So let's talk a little bit more about this. Jocelen, do you want to share your story as an SLP and how you came to introduce the A-FROM into your work at Stanford in the head and neck cancer clinic?   Jocelen Hamilton  09:37 Sure. So after about a year and a half of working with individuals with aphasia and applying LPAA and using the A-FROM with clients, I then changed gears back to working with people who had neck cancer and we moved to California and I joined the Stanford team and I was back into primarily working with individuals with dysphagia. I just kept thinking about how can I take this model the A-FROM and apply that to working with individuals with dysphagia.   How I would previously use the A-FROM is that Venn diagram. I would just draw it on a piece of paper and start writing my notes on that as I was maybe doing an intake or working with a client. I started doing some of that model just in my note taking and looking at these different domains that might be impacted. And this was just kind of over a series of months, and even a year, where I was thinking about how to apply this and shared it with my patients. Here are some of the things that I'm seeing and what you're sharing with me that shows your participation is being impacted.   Then I ended up talking with our director, Heather Starmer, about an idea of a project—like how can I move this ahead. Theresa had recently joined our team and Heather said, you might want to talk to Theresa about that. She might be interested in doing a presentation on this. And so it was great, because Theresa and I had not yet talked about our aphasia backgrounds together. It was really neat to then work together and begin to apply this with more of our patients. Initially, we kind of struggled with what the environmental domain look like for somebody with dysphagia. And it was neat to talk through different cases with each other to see how it could apply. And then that's where the Swal-FROM came from.   Ellen Bernstein-Ellis  11:39 Wow, that's wonderful that the two of you were at the right place at the right time. And I always feel that the expression “stronger together” seems really fitting in this situation. But Theresa, do you want to share how you brought a life participation perspective into your work at Stanford?   Theresa Yao  11:57 Yes, sure. Because I've always been a big fan of the ICF model. When I was a student clinician in Aphasia Treatment Program, I learned so much from this model, from LPAA, and from Ellen, you. And also, of course, our members in our Aphasia Treatment Program. And I just could see the huge benefit from the LPA approach in the client's life.   So that's why once I started working in real clinics, I always think about this model. And when I started in at Stanford, I started working with the head neck cancer patients. I just feel like so many patients, they live with long term dysphagia, or a sore throat because of the neck cancer treatment they had. And they sometimes just can't get rid of it. They have to live with it. It's just like aphasia. They live with aphasia. And then it just clicked.  I just think that it's pretty similar to the situation that you're living with aphasia, and it's that same impact on patients quality of life, on their participation.   Then I just started thinking, maybe we can do something with this model to help our patients. And then, of course, Jocelen was there, and then we were just talking about her experience with aphasia treatment and LPAA. And we just clicked. That's why we came up with this (ASHA) presentation, and this idea of how to adapt this A-FROM to our Swal-FROM. And then also, we're talking about this because I also started a support group because I feel like people wanted to get connected. They wanted to engage like aphasia group.  They wanted that community to be able to participate, to be able to share. So that's why I think this also helped me to try to initiate this project, this group, so that we can help more people so that they can, they can help each other.   Ellen Bernstein-Ellis  13:56 I really love that you saw the power of group therapy, and you then were able to bring it into a different treatment arena. I really don't remember hearing too much about separate support groups for people with swallowing disorders. I don't know how common they are. But it sounds wonderful that you started one, Theresa. So very exciting. What do we know about the incidence of dysphagia in stroke survivors, and then people in skilled nursing, and from there, head and neck cancer? The reason I ask because I think there's overlap. I mean, you're seeing the dysphagia in head and neck cancer, but we know that it occurs frequently. Do you have any numbers to share about the incidence in stroke survivors?   Jocelen Hamilton  14:39 Yes, so it's about 45% of individuals with strokes experience, some degree of dysphagia and there's been research that's shown 40 to 60% of older individuals in nursing homes have dysphagia. There's even some research out there that one in 25 adults will experience dysphagia. Then when we look at individuals with head and neck cancer, and this could be on the lower range, but one of the particular statistics is 45 to 50% of individuals with head and neck cancer experience dysphagia.   Ellen Bernstein-Ellis  15:11 The importance of considering the whole person (for dysphagia tx) is really going to affect a lot of people that we might be seeing as therapists. And the two of you saw that there was a strong impairment focus in dysphagia management.  Can you give an example?   Theresa Yao  15:27 I can talk a little bit about this. When I was in grad school, I know that most of the things we learned was how to identify the impairment of dysphagia. We learned all kinds of treatments and exercises for dysphagia. We learned like how to modify diet, how to look for aspiration, penetration. Almost everything we learned, and also what we've been practicing in our clinical practice are heavily focused on the deficit and impairments. That's basically how we trained to assess and treat the physiological changes or the deficit. It just, to me, sounds like it's really technical.   I recently just look up the ASHA NOMS, the National Outcomes Measurement System-- that's what we usually use as judgment of whether the patient is making progress or not. They use this particular functional communication measures to see there's like different levels. If you're really looking at this national measurement system, you can see that the wording and the definition of each level is pretty much impairment focus. They mention diet level, safety, efficiency of swallowing, compensatory strategies, or cues, etc. So these are really heavily focused on impairment, but you don't really see like things that relate to participation, quality of life, environment, and those factors. So the consequences that if all the clinicians are just looking at the impairments and not looking at other factors, then you are missing a lot, you're not treating the whole person.   Ellen Bernstein-Ellis  17:11 Well, that's perfect, because that leads me to my next question. Why is it important to go beyond the impairment level measurement with dysphagia?       Jocelen Hamilton  17:24 I would say, because dysphagia is more than a physical difficulty. That's our name for that physical impairment. But it influences more, just like we know, with aphasia, that it's not just how much they can say, what they understand in the different modalities, but how a change in this function in the body influences everything.   So one of the analogies that I can relate to, that I've heard before in terms of looking at accessibility, has to do with like, physical impairments. So if somebody is paralyzed, they can't move their legs, well, the physical therapists are going to look at their legs and see the range of motion, their strength and all of that. But they're also going to think about how are they going to get into their house? And how are they going to move around?   Well, sometimes what can happen with dysphagia, as Theresa already talked about, we're looking just at how does that epiglottis move? What is the airway invasion like? But then are we going to talk about well, what's going to happen? We just had the holiday with Thanksgiving and the holidays now. What are family meals going to look like? I think one of the things that sticks out to me is what would my day to day life and social life be like if I couldn't drink with ease and comfort, I couldn't eat with ease and comfort, if I needed to have special food and special liquids and special strategies? So this impacts so many things within a social realm, and personal realm as well. We'll get into that in more detail as we go. But it's not just about the change in a physical function. How does that influence the rest of our lives? And it really does. There's been research that shows about burden and quality of life and psychological health.   Ellen Bernstein-Ellis  19:08 Well, this really hits close to home for me. I'm going to share with our listeners a personal story, because I've always been very passionate about our field and an advocate for speech language pathologists, but being on the other side of the table, when my husband was diagnosed with terminal cancer, did nothing but increase my own respect and appreciation for the role we play in supporting our clients and their loved ones.   Through this process, specifically with dysphagia, and I want to give a shout out to my husband's speech pathologist at Stanford, Heather Starmer, (and another congratulations to her because she just was made a 2023 ASHA fellow), but I'll just always remember the day that we came in. I know that Heather was set with her treatment plan-- I could already guess what we needed to do for the day. And that plan went out the window because we both signaled, Steve and I, that he was just feeling an increasing burden of trying to manage all of the home tasks we were supposed to do for both PT and speech, and it was just really impacting how he was feeling. And so instead, Heather focused on the personal impact and the quality of life issues that we were bringing up. Steve wanted to be compliant. He wanted to be the best patient there was. But she really listened to him carefully. She brought her best counseling skills to the table that day, and helped us come up with a plan that we could manage in a way that would help us sustain his quality of life as best as possible.   So I really saw, personally, I mean, I saw day in and day out how his dysphagia from his head neck cancer really impacted, hugely impacted, his participation with our family, and his quality of life. I am grateful for this work that you're doing and the passion you feel for looking at the whole person as you assess and treat dysphagia. And thanks to you, I've been reading, since dysphagia is not usually in my wheelhouse as much these days, but thanks to preparing for this particular episode, I was able to read some articles by Rebecca Smith and her colleagues that showed me that there's some amazing work being done looking at this whole topic, so thank you for that. Okay, and taking a deep breath, because that's a story I've been thinking about for quite a bit.   Back into our next question. What is the speech pathologist's role in assessing and addressing health related quality of life and the associated mealtime quality of life? That seems to be talked about a lot in the literature right now. Jocelen, is that you again?   Jocelen Hamilton  21:57 I'm glad you mentioned Rebecca Smith's work. There are actually three papers, I think, that that group, she and colleagues, put out in 2022. And specifically, I'll share a few quotes from their paper The True Cost of Dysphagia and Quality of Life:  The Views of Adults with Swallowing Disability, but in a way, there's a call to action, and she's not the first to mention it. But for us to include social participation, and their overall well-being, as part of our dysphagia intervention. To make that routine, and then to also ask questions: How are you doing? How are the holidays? How are these social settings with eating? I like to ask patients and their family members, and ask them separately, not meaning like individually, within the same session: Are you participating in doing this, the same things that you did before your diagnosis? Or how is that looking? Are you going out to eat as much? What do you miss now that is different and you're experiencing changes in your swallowing.   And it's interesting, because sometimes the partner will say that they miss going out to eat, and they need to navigate feelings like, “Well, I don't feel comfortable eating this in front of my loved one who has difficulty swallowing. I feel conflicted about I get to eat ribs, and they don't.” Those kinds of things. The importance of eliciting these stories, so we can really see what are their challenges, because then we can, like LPAA teaches us, we can engage in this creative problem solving and how we can help navigate through some of these challenges. I think those are a couple of important things that we can look at to support people.   Ellen Bernstein-Ellis  23:45 Thank you. And I just wanted to let our listeners know that we're putting all these references into our show notes. I took some from your ASHA presentations that I attended. So those will all be cited in the show notes.   Well, to expand to the participation, environment, and personal domains, you started to think about using patient reported outcomes or PROs for assessment. Why don't we go through the domains and discuss potential tools and interventions to fill out this framework a little bit more. So what might it look like if you consider participation?   Jocelen Hamilton  24:24 When we're looking at participation, we're looking at these meaningful activities may or may not involve oral intake, but looking at their current levels of participation compared to their pre cancer status. So how often, and in what ways, is someone with swallowing challenges participating? I kind of already talked about that a little bit. And how are the family members doing?   Here's one of the interesting things that I've had patients share here. Sometimes, one of the swallowing strategies that a patient needs to complete is a purposeful throat clear, and a re-swallow, or some patients do naturally their throat clearing, or maybe they're coughing when they're eating and drinking. This is an area where it calls attention to them when they're doing this. And then during the pandemic, we were all super hyper aware is somebody clearing their throat? Is somebody coughing? I've had some patients where they really don't feel comfortable because it calls attention. And people ask, how are they doing?   And also, another challenge being that when swallowing is hard, talking and swallowing is extra hard. When swallowing is challenging, most people need to just do that, where we take for granted that meals are a very social time. So some of those issues can be really challenging. There's also some individuals where their difficulty with swallowing has to do with loss of the bolus coming out and so there's almost changes in appearance, where they may not feel it. Their lip, their chin might be numb, and they don't know that liquids are dripping out, or they have a piece of food sitting there. So, they might be hesitant to go out and participate in different social settings. Even sometimes we have patients where they don't feel comfortable eating with their own family members, where they will eat completely separate from their spouse.   Ellen Bernstein-Ellis  26:28 I am just really struck again about the overlap of some of the things in your head neck cancer patients with clients I see with aphasia. It's really striking. So should we take a moment and discuss how this might look if you consider the environment?   Jocelen Hamilton  26:44 I really didn't address a PRO at all.   Ellen Bernstein-Ellis  26:46 Oh, it's not too late. We can still do that.   Ellen Bernstein-Ellis  26:52 Why don't you go ahead?   Jocelen Hamilton  26:55 Sure. Okay. So we're looking in this interview, right, like gathering information, learning how these things are challenging for them. For patient reported outcomes, PROs, Theresa, and I both looked into different ones. And oh, this one has these questions. And this would fall within this domain. So I'll touch base on a few of them here. And then some of them, they have questions that actually apply to  all of the domains.   So for these, there's one the Swal-QOL, this is probably the most broad in terms of looking at all of the domains that are within this Swal-FROM. It has 10 different quality of life concepts that it has specific questions for. So for this one, there's one subset that's all about social functioning. Some of the questions, they're rating from either strongly agree five point scale to strongly disagree, One of the questions, for example, is “I do not go out to eat because of my swallowing problem.” That really tells you where they're at with that participation, or “Social gatherings like holidays or get togethers are not enjoyable because of my swallowing problem.” So that really hones in on that challenge.   Within our specific area of practice with individuals with head neck cancer, there's a scale called the Performance Status Scale Head Neck Cancer, PSS-HN. Now you might think, how might I use this? I encourage people to be open minded, even though this wasn't validated. And some of these are not validated on individuals who have dysphagia from a different cause other than head neck cancer. It doesn't mean that you can't use it as a way to gather information, engage, and perhaps re administer.   I'm also a big fan of, as people fill this out, having a conversation about their responses as they go to gather information. But with this, the Performance Status Scale, there's a specific rating scale about public eating. So zero means always eats alone. And 100 is no restriction of eating for any place food or company. So they would eat out at any opportunity. Where in-between might be one point on the scale, “eats only in the presence of selected persons and selected places”, or they would eat out but there would be another option,  “eat out, but be more selective about the diet textures and things they would consume in a social setting”, which is common. Some individuals will specifically choose different foods when they're when they're in a social setting.   There's also another PRO, the Dysphagia Handicap Index. So with this one, it's a 25 item questionnaire and it does specifically look at physical, functional and emotional aspects of dysphagia. And so a couple of questions from there that would fit with the participation domain include, “I'm embarrassed to eat in public” and “I don't socialize this much due to my swallowing problem”. Those could give some insight into these areas by selecting some of those questions.   Ellen Bernstein-Ellis  30:08 Well, I'm really glad you caught me. I think I was so struck about the overlap that, thank you for coming back and talking about those PRO's. Are we good? Can we transition to the environment next? What would this look like? What does the Swal-QOL look like if you consider the environment.   Theresa Yao  30:29 When you talk about the environment, it can be factors such as the availability of the appropriate food textures, and oral liquid consistencies across different social settings. For example, if you go out to the restaurant, are there any easier food texture that's available for people with dysphagia? And that's one of the environmental factors.   And then there's a new article from ASHA leader that just came out about dining with dysphagia. So that's actually a pilot program from University of Cincinnati that try to help restaurants to expand their menu options so that they have more choices for people with swallowing disorders.   Ellen Bernstein-Ellis That's amazing.   Theresa Yao Also, another factor that related to the environment is the attitude and level of acceptance or support the people with dysphagia can get from their family, their friends, or even just strangers in their eating situation. So just like Jocelen mentioned, if you're coughing or clearing the throat, what the reaction from other people will be like, -- if they're supportive, or if they're not so. Sometimes these factors can make a patient uncomfortable eating out because of those environmental factors. And then also, the attitude from people around usually can be impacted by culture. Which type of textures they prefer to consume, and how they consume. If you go to a different type of restaurant, they may have different types of food textures, that are specifically for that culture, so that's also another factor.   And then also, on the broader spectrum, is the attitude from the healthcare professionals or the public, because the attitude from healthcare professionals is basically, because dysphagia is invisible, and when you are in the hospital, not everyone can see it. If you have leg injury or arm injury, people can see it. But if you have dysphagia, you can't see it. And then when the health care provider is, prescribing your pills, and if you can't swallow, how can they take the pill? They probably are not aware of this, this type of disability, so they may not prescribe you the right pills.   These are the things that we can consider as environmental factors. And of course, even larger scale, there's health care policies, the service systems, that may impact the people with a dysphagia too, because insurance may not pay all the dysphagia services, or how often can people get dysphagia support or service? So those are all the environmental factors that we may consider.   Ellen Bernstein-Ellis  33:21 I think the importance of this framework is helping us as clinicians to continue to think just broader and more widely about what's impacting the person in front of us. I mean, wow, you are giving us a lot of factors, from the very personal to the broader social policy. And I want us to take a moment and also talk about personal factors, that whole domain.   Theresa Yao  33:41 Personal factors can also be very, very important. And  a lot of things can be involved. So we know that the person was dysphagia may not be the same person, have the same hobbies or same traits, as before their treatment. So that may cause anxiety, or they may feel embarrassed because of their eating habits, or the change of their eating habits. Because we know that eating and drinking is very individualized. Some people, if they're born as a slow eater, they probably are okay with their dysphagia diet or if we ask them to eat slowly and take smaller bites, that's totally fine. But if some people are born as a fast eater, they will have a huge challenge with, if you give them the strategy to eat slow, taking small bites, because that's just not them anymore. They just feel like they're a different person and then they feel disappointed or frustrated if they can't eat as fast as they used to.   And I always share this in my clinic. I  see two patients with similar procedures. One person can feel really happy with their diet. They feel okay because they're always eating soft foods or soups. And then another person just with a little bit of impairment of mouth opening, they feel like it's just really frustrating because they can't bite their sandwiches and burgers. And that just makes a huge difference. But if you're only looking at their swallow study, it's the same, they probably don't have any major impairment, but the impact on the quality of life on their participation, environment, and also personal factor. It's so different. So that's why I think considering a personal factor is really important.     Ellen Bernstein-Ellis  35:38 So you're giving us examples of the things we should be thinking about, you're giving us examples of some of the PROs that might help us measure. But if many of the EMRs, the electronic medical records are set up for impairment focused measures, how can you adapt the documentation to include these other domains? That's always a barrier, or can be maybe, not always, can be.   Jocelen Hamilton  36:00 I think sometimes it can be a barrier. If sometimes the entry is just you have to click certain things, there's not a lot of room for free text. With the EMR that we have, we can have a set template, but we can copy and paste anything in there. So what I did is I took the A-FROM--actually, in the same paper that put out the A-FROM, they put the FROM, Framework for Outcome Measurement, and actually suggest that you could use it for individuals with TBI and called it TBI-FROM.    I took that and put it into a template and have the citation for it there and then added a title. It gives a visual for other individuals reading the note of what I'm talking about. ‘Survivorship beyond body function domain: Dysphagia's impact on personal, participation, environmental domains', so I have that as a title. I have it as this set, we use epic, so I can do dot phrases (Smart Phrases). I can drop that into a note. And then as I go through and document, I have the subtitles of body function, participation, environment, personal factors in as I'm collecting this information. That's how I can organize my note.   I don't do it every single time with every single patient. Sometimes some of our sessions are more impairment focused, like we need to for safety reasons focus on this. Sometimes it's more a whole session all about how are they doing with their personal domain? I had a patient in the clinic today, and he is depressed, and we just had this quick talk of, “Okay, what do we need to do? Can you talk to your primary care doctor? This is common, many individuals with head neck cancer have depression.” But I'll organize my note, getting back to the notes, with those subtitles and putting the information in there. It also is a cue for me, because I keep needing cues and reminders to come back and broaden that focus, instead of always being in on the impairment and you monitor, document, and then monitor, as I'm reviewing back on their notes to see how they're doing across these different domains.   Ellen Bernstein-Ellis  38:19 That is a beautiful example of how you can adapt something. I'm sure a lot of our listeners really appreciate you describing it so carefully, and hopefully will inspire some of them to see what they can do to adapt their EMRs.   A little bit earlier, you mentioned the importance of getting perspective from both the client and the care partner. How does the caregiver or care partner experience fit into the Swal-FROM?   Theresa Yao  38:47 Caregiver or care partners, they play a really important role in this whole journey with individuals with dysphagia. And I'm sure Ellen, you probably were in that role before. Most of the time, it's the caregiver making the meals for the spouse. Making the meals for the patients with dysphagia can be very challenging. Because just the texture, you have to take care, and the taste. I have caregivers talking to me. They told me that they tried their best to make all the foods but the patient didn't eat at all or didn't like it at all. Then they feel super frustrated. These are all the challenges that the caregivers may face.   Dr. Samantha Shune and colleagues, they did a lot of work on this caregiver burden topic. Their study said increased caregiver burden has been associated with the degree of impact that dysphagia is having on mealtime logistics. Family members also report increased anxiety and fear and frustration, stress, embarrassment and social isolation. So these are very two critical things to consider when we're thinking about whole person care, because we can't just care for one person, the patient. But if the caregiver is also experiencing all the stress, all the anxieties, we also need to consider that factor.   Researchers in Australia, Professor Nund and colleagues, they also pointed out that this specific caregiver burden is third party disability. And it's the consequence of that person's impairment, which impacts the functioning and ability of their family members or significant others. That's why we want us to fit this caregiver experience into this Swal-FROM framework. Just adding the family caregiver in all the different domains to support patients with dysphagia. And caregiver can influence four domains. But at the same time, also, we need to take care of, examine, the four domains of the family member or the caregiver--going to check their participation, their environment, and their personal factors. Those are really important, because their health and well-being can be affected by being in the journey of taking care of people with dysphagia. So they're super tied closely. That's why we wanted to fit this framework as well.   Ellen Bernstein-Ellis  41:21 One of the clinical tools I've learned is available is a PRO measure called the CARES, developed by Shune and colleagues, and we'll again put the citation in our show notes. Theresa, could you describe that a little bit more?.   Theresa Yao  41:37 So this is a wonderful screening tool that developed by Dr. Shune and colleagues. It's full name is called Caregiver Analysis of Reported Experiences with Swallowing Disorders. It has 26 items in the questionnaire. And then there's two parts that explore a different aspect of dysphagia's impact on the caregiver. One is a checklist on the behavior and functional changes, and one is a checklist of the subjective caregiver stress. Basically, it's a simple yes/no questionnaire. You can give it to the caregiver and they can just circle yes or no. Then from that, you can figure out what area you may address as an SLP. Or you may want to refer them to a specific team or professionals to address that, because we have limited scope of practice, we can't do everything. But if we can help them to identify the issue and then point them in the right direction, to the right team. That may help a lot.   Ellen Bernstein-Ellis  42:43 In your ASHA presentation you also mentioned the Rome Foundation is a resource and another website that offers skill building around managing serious illness conversations. We're going to put both of those resources into the show notes for people, but we don't have time right now to go into them fully.   But Jocelen, can you address or share what benefits you've seen by adopting this framework? Does it help with goal setting? Does it help with acceptability of recommendations? What have you seen?   Jocelen Hamilton  43:12 I think it's helped me and I feel like it's helped patients and our families have a little more clarity about, okay, these are the areas that are challenging. And again, I'm a visual person, so if I write it out with them, and they're telling me things, and I'm explaining, I get excited about the diagram, and I'm like, you know, see, this seems like an area of challenge. Is there something that you're interested in doing in this area? Are you willing to talk with another person who's gone through this?   So I feel like it really can give clarity, I think, for myself, what you know that A-FROM does, and Swal-FROM now is to not, I professionally can get really hung up on the impairment. And I can't always change that, right? We can't always change it to the degree that we would like. Of course, we would like everybody to have complete resolution, right? And so there can be this frustration and powerlessness with that. And obviously the patients and our family members can be experiencing that also.   And with this broader view, we can say but here's what we can focus on what can we do to have you participate that would make you feel better? What can we do that would help you with your personal feelings? So I feel like it addresses things that matter and we can have more conversations about how is their day to day life being impacted? What are some small steps we can take in a direction that might help them and their families.   Ellen Bernstein-Ellis  44:43 That's beautiful. Thank you so much, Theresa and Jocelen. It has been a pleasure  and I've learned so much from both of you, listening to you apply this framework and look deeply and carefully at quality of life for people with dysphagia. I really appreciate it. Is there anything else you want to add?   Theresa Yao  45:03 I just wanted to add a little bit. So I think it's really important as clinicians to listen to our patients and caregivers, because we need to learn from their experiences, their perspective. And, like we mentioned dysphagia is invisible. I wanted to share one of the quotes from one of the dysphagia support members. He says,  “dysphagia is a label you carry with you inside.” And that's really just so true, because it's hidden. If you go outside, people see like you what you can walk, you can talk, but they don't know that this disability is hidden inside. And I think it's so important to address not just the impairment, but also listen to the patient's perspective. And then help them to address all the domains. I always think that you become a better clinician because what you learn from your patient. So that's all we need to do.   Ellen Bernstein-Ellis  46:08 I can't think of a better way to close this interview. Even though I could ask you several more questions, we could be here for another hour, I just want to thank you for bringing that patient's voice, a client's voice, into the discussion today, so beautifully. And let's end on that note of really learning from our patients' perspectives. So I want to thank you both. And I want to thank our listeners for listening today. And for the references and resources mentioned in today's show, please see our show notes. They're available on our website at www.aphasiaaccess.org. And there you can also become a member of our organization.   Jocelen Hamilton Yes, yes, Do it!   Ellen Bernstein-Ellis Thank you! Browse our growing library materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@AphasiaAccess.org For Aphasia Access Conversations, I'm Ellen Bernstein-Ellis. And thanks again for your ongoing support Aphasia Access   Resources and References Ariadne Labs: Serious Illness Care Program https://www.ariadnelabs.org/serious-illness-care/serious-illness-care-program/ The Rome Foundation https://theromefoundation.org/   Chen, A. Y., Frankowski, R., Bishop-Leone, J., Hebert, T., Leyk, S., Lewin, J., & Goepfert, H. (2001). The development and validation of a dysphagia-specific quality-of-life questionnaire for patients with head and neck cancer: the MD Anderson dysphagia inventory. Archives of Otolaryngology–Head & Neck Surgery, 127(7), 870-876. Hamilton, J., Yao, T. J. (2023). Framework to Guide Whole-Person Care for Individuals with Dysphagia. 2023 ASHA Convention, Boston, MA. Hamilton, J., Yao, T. J. (2022). Shifting to Whole-Person Care for Head Neck Cancer Survivors Living with Dysphagia. 2022 ASHA Convention, New Orleans, LA. Hickey, E. and Douglas, N. (2021) Person-Centered Memory and Communication Interventions for Dementia: A Case Study Approach. Plural Publishing, Inc. Howells, S. R., Cornwell, P. L., Ward, E. C., & Kuipers, P. (2021). Client perspectives on living with dysphagia in the community. International Journal of Speech-Language Pathology, 23(2), 201-212. Kagan, A., Simmons‐Mackie, N., Rowland, A., Huijbregts, M., Shumway, E., McEwen, S., ... & Sharp, S. (2008). Counting what counts: A framework for capturing real‐life outcomes of aphasia intervention. Aphasiology, 22(3), 258-280. List, M. A., D'Antonio, L. L., Cella, D. F., Siston, A., Mumby, P., Haraf, D., & Vokes, E. (1996). The performance status scale for head and neck cancer patients and the functional assessment of cancer therapy‐head and neck scale: a study of utility and validity. Cancer: Interdisciplinary International Journal of the American Cancer Society, 77(11), 2294-2301. McGinnis, C. M., Homan, K., Solomon, M., Taylor, J., Staebell, K., Erger, D., & Raut, N. (2019). Dysphagia: interprofessional management, impact, and patient‐centered care. Nutrition in Clinical Practice, 34(1), 80-95. McHorney, C. A., Bricker, D. E., Kramer, A. E., Rosenbek, J. C., Robbins, J., Chignell, K. A., ... & Clarke, C. (2000). The SWAL-QOL outcomes tool for oropharyngeal dysphagia in adults: I. Conceptual foundation and item development. Dysphagia, 15, 115-121. Nund, R. L., Scarinci, N. A., Cartmill, B., Ward, E. C., Kuipers, P., & Porceddu, S. V. (2016). Third-party disability in carers of people with dysphagia following non-surgical management for head and neck cancer. Disability and rehabilitation, 38(5), 462–471. https://doi.org/10.3109/09638288.2015.1046563 Shune, S. Moving beyond the isolated swallow: Dysphagia in the context of the shared mealtime. https://dysphagiacafe.com/2015/03/19/moving-beyond-the-isolated-swallow-dysphagia-in-the-context-of-the-shared-mealtime/ Shune, S., Davis, C., & Namasivayam-MacDonald, A. (2021). Contributors to Dysphagia-Related Burden Among Spousal Caregivers of Stroke Survivors. Archives of Physical Medicine and Rehabilitation, 102(10), e65. Shune, S. E., & Namasivayam-MacDonald, A. (2020). Dysphagia-related caregiver burden: Moving beyond the physiological impairment. Perspectives of the ASHA Special Interest Groups, 5(5), 1282-1289. Silbergleit, A. K., Schultz, L., Jacobson, B. H., Beardsley, T., & Johnson, A. F. (2012). The dysphagia handicap index: development and validation. Dysphagia, 27, 46-52. Smith, R., Bryant, L., & Hemsley, B. (2023). The true cost of dysphagia on quality of life: The views of adults with swallowing disability. International Journal of Language & Communication Disorders, 58(2), 451-466. Smith, R., Bryant, L., & Hemsley, B. (2022). Dysphagia and quality of life, participation, and inclusion experiences and outcomes for adults and children with dysphagia: A scoping review. Perspectives of the ASHA Special Interest Groups, 7(1), 181-196.

Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, and Thursday Night Poets.  I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Paula Valente and Dr. Assunção (Maria) Matos from the Portuguese Institute of Aphasia (IPA). In this episode, we'll be discussing Paula and Maria's role in building three dimensional social, LPAA in Portugal from the ground up. Biosketch: Paula Valente is a Speech and Language Therapist, social entrepreneur and responsible for the creation of IPA. She realized that there are important gaps in the therapeutic interventions that are offered to the person with aphasia in Portugal. With the support of partners in Portugal and in another countries, and with a team consisting of a speech therapist, a psychologist, a social worker and volunteers, Paula is convinced that the path will not be easy, but it's possible.   Dr. Assunção (Maria) Matos is a Lecturer at the University of Aveiro in Portugal. Her work is grounded in the WHO-ICF model and social, LPAA approaches to aphasia rehabilitation. As one of Paula's teachers, she influenced the development of the IPA and is a crucial partner in the innovative programming that they offer. Take aways: Shift to Social Approach: SLPs in Portugal moved from a medical model to a social approach in aphasia intervention, realizing the limitations of traditional speech therapy alone. Comprehensive Support Program: EPA in Portugal offers a wide range of services, including therapy, psychology, and caregiver support, aiming to enhance the lives of people with aphasia and their families. Limited Services in Portugal: EPA is the sole organization providing such extensive aphasia support in Portugal, serving the entire country, with an emphasis on online services to reach distant regions. Professional Training Focus: Assunção Matos emphasizes holistic training for speech-language pathology students, preparing them for diverse practice settings by exposing them to various intervention approaches. Fundraising Challenges: EPA faces fundraising challenges in Portugal due to limited access to funds and philanthropic support. To sustain their services, they generate revenue through clinical services, therapy programs, online courses, and book sales. They also have associates who contribute annually. Despite challenges, they are working to demonstrate the effectiveness of their approach to gain government support for sustainable funding.   Interview Transcript: Jerry Hoepner: Well, it is my privilege today to have a conversation with Paula and Maria. So, we're going to just begin talking about the programming that they've started within Portugal. And I'm just really excited to have this conversation. I think this is a unique conversation for aphasia access. Because we're really get to talk about the process of building a program within a country from the ground up from scratch. So, I think we're used to stepping into this process partway through and again. This will be a really fun conversation. So welcome, Maria and Paula. And yeah, welcome to Aphasia Access. Assunção Matos: Okay, thank you. Thank you, Jerry, for the great opportunity of being here with you, sharing our experiences and our dreams. It's an honor to be here with you. Honestly, thank you.   Paula Valente: I make my [unintelligible]. It's the same. Thank you very much. Jerry Hoepner: Absolutely. I have to say I was really privileged to have some conversations with Maria and Paula at the IARC Convention in Philadelphia last spring. So got the opportunity to meet there. And obviously really interested in learning more about your work and programming that you started in Portugal. So. we were talking just before this podcast about your name, and then you call it the EPA or the I.P.A. I was saying that in a in English we'd probably call that the Portuguese Institute of Aphasia. But I'll let you explain the name a little bit from the Portuguese standpoint. Assunção Matos: So, IPA is Instituto Português da Afasia the so it's exactly what you were saying in in in English. I.P.A. is known as EPA all over all over the country and it was decided to call the association like this? It was actually it was Paula's decision. Paulo, do you want to say something about it? Paula Valente: No, we just at a name to our legal name is another one, because in when we did the registration of the organization, we had to choose another name. So, our name is Afasia. It's like, if IPA. Afasia Epaphazia. So, our organization of the legal name is Epaphazia. But the trademark Is Instituto to Portuguese Epaphazia. That was the Portuguese Institute of Fascia. When we choose this name it was a little bit scary, remember, as soon, so I don't know if because we were afraid to do. To tell people this is a big thing we are a Institute is an institute is a reference is something that sounds like very credible. And we want to do that. But at the time it was the beginning, and we were like, I hope this will work. So was like, okay, let's do. Let's do, Let's do this with this big name, impressive name. And what's also a strategic name to show the people that we were doing something with something good, something with good basis and good principles, and the with and impact to the person the people with the afasia. So, we were a little bit afraid at the beginning, but with the responsibility we were taking. But I think it was the right choice. Jerry Hoepner: Yeah, I agree. I think it's a great name and thank you for filling in a little bit of that background. In full disclosure. There's no way I could pronounce the Portuguese version of that name. So really happy to have you do that? But yeah, this really speaks to that kind of building from, you know, from the ground up from scratch. Paula, I'm interested in a little bit more on that. How did the EPA or the EPA come about? Paula Valente: Okay. So, I was. I've been a speech therapist since 2008, and I did my practice with a Assunção. She was my teacher in the hospital and maybe she can tell a little bit. She influenced me at the time because when I finish that practice internship, I was convinced that my mission, my life mission, and my professional vocation was to work with people with aphasia in a socio model or in more psychosocial model, because she taught me that in the hospital. So, from there I study about that, I did my master in that field like my master. I'm sorry about my English, so try to understand me, please. My master was about partner training aphasia partner training, communication training. And from there I was convinced that I had to do more to help people with the Aphasia to live better, besides the aphasia I was working at the same time in hospital context, public one. And I was also working in a private clinic with patients with a phase. So, I saw the difference of get to work in more functional and communicative way with the people, with the, with the person, with the patient and his family, and in a medical model. So, I was seeing the differences I was studying, and I thought no, I would love to help the people with the aphasia to in Portugal, because I was also understanding better the public services to this, this to these persons to person with aphasia, and I started to feel that I could do more. Something started to make me dream about a common community program or center and at the time I had to I did the A social internship course, Intensive program training program that give tools that I needed to start making my dream a reality. So, at the time after I did that social entrepreneurship course, I said goodbye to my jobs and I started a pilot project. The name of Pilot project was Aphasia 3D. Because at the time I thought already to work in 3 dimensions, person with aphasia, family and friends and community. So, to achieve a better life with the aphasia I needed to working that 3 levels. So, the pilot project was aphasia 3D was the name but when he I did my pilot project I called was from Zoom at the time she was my teacher, but also she gave me orientation in my thesis master thesis a project and I call, and I talk. I talk with her. We had a conversation about these, and she was a big supporter. So, she at the big since the beginning, she told me. Paula, I am with you and I will help you. I will be on your side. Let's go. So, she was very, very important. Since the beginning, since everything I don't know. So, add in the final of that. Here the pilot project began and we started to invite some people with the aphasia, some family members, some friends of mine to be the social organization. I don't know. How do you say in America. But we, when we, we have to have a group of founders to register our organization to founder organization, we have just say, let me see. I think it's the Board of the Association. Yes, it's like we have the board. We have a structure and we invited people to do that with us. And then, born the organization the ONG EPA institute together the maybe I can now talk more about what we do but maybe someone can explain better how she influenced me to do that, because is also our passion. Assunção Matos: Well, first of all, first of all, I think I need to do a clarification. My name is Maria. I'm also Assunção, so when Paula is talking about this and some, I'm the same person to say and all other people from other countries, what can I say? I started as an speaking language therapist in the nineties and my first job as an SLP was in a cerebral palsy center with children and their families and indicators and in this kind of center we were very already at the time we were very focused in intervention, on communication. So, it was really common to work with the children, with their family members with the augmentative and alternative communication systems, low high technology. So, this was very common for this population already. So when I changed my job 2 years later, and I went to a central hospital with people with aphasia, my idea of working as an SLP was, you know, focused in communication, and not just in speech or language but thinking about people with the aphasia at the time. The medical model of intervention was the strongest one in hospitals in Portugal, maybe around the world. I'm not sure so when I started working with my patients, I thought I have to do more. This is not enough, so I was not happy about what I was doing, because after months and months of therapy my clients, they were just looking the same. They were not improving their functionality, or they were not doing their lives, as I thought they could do if I did something different. So, I start looking. I went to congresses. I went to the International Society. How many different alternative conferences by the time in the Netherlands, and I started looking, for no one uses AAC with the people with the aphasia So I started also looking for papers, and then I could find Linda Worrall, Aura Kagan, Audrey Holland and I started dreaming. So, policies, EPA is my dream, and I used to say that Paula did what I wanted to do, and I was not able to do because I couldn't just quit my job As she did so, I started at the same time I started teaching in the SLP course and in 2000 the ICF appeared. I'm trying to jump, not to be too boring and everything made sense to me. So, I started looking for different ways of working even at the hospital, and I started bringing the family, bringing the family members to the hospital. I started them trying to train my patients with the total communication approaches. I tried to do my best, because it's not easy in a medical context, you know, to change minds and to change in. That's why, Paula, she's saying she came to me as a student. I was doing this this kind of job. I was trying to apply what I've learned from AAC and children with cerebral palsy, and I was doing some experiences with my patients And also suddenly I met some people in in the Isaac Conference that I told you about few minutes ago and I got involved in a multinational project where we were trying to develop a specific software for people with aphasia to communicate better with a portable AAC device, I can say I'm very proud to be involved in in that project. And so that's how I started. That's how I started. Jerry Hoepner:  That's fantastic. It's just been fun listening to your story kind of a microcosm of things that have happened in other countries, I think, in terms of moving from the sense of the medical model isn't meeting the needs of the people that we're serving. I heard, you know, just a little bit of some of my conversations and everyone's conversations with Audrey over the years so we shift from a very medical behavioral approach to one that is more of a social functional approach. I can just hear those same threads kind of being woven into your stories. And just really, really interesting, I mean. Assunção Matos: Sorry. Sorry, sorry, Jerry. It's just to say that in Portugal no one was then I know no one was working in this swaying, in a more social approach. And Internet wasn't like it is today. So it was really hard to get access to the papers. But I also remember buying the book beyond the fascia from the connect in London and I got in love about connect. Yes, I still have it here also. And I decided, I said to my husband, I have to go to London, and I decided to go to the connect and see how they were working, and do the training the trainers course that they were that they were well, I was trying. It was hard, but I was trying to do it in a different way, because I could see my patients after months and months of therapy linguistic therapy it wasn't enough, and I felt I have to do something else. Jerry Hoepner: So insightful. And I think so many people have come to that conclusion about social approaches and the life participation approach. That Doing those impairment-based pieces alone is just not enough right? Not that they don't have a place, but alone. They're not enough. I think it's really great. I was thinking about Paula's thesis on communication partner training, and how that must just sprung out of all of these discussions, and certainly just central to a life participation approach. The other thread that I kind of heard from both of you is this idea of the dream that you started to have to create something to fill this gap? Maria, I like the way that you said that? You know you started dreaming, and Paula made that dream happen. Paula Valente: Maria knows that I am the crazy, 2 of us is necessary courage conditions of obviously, because as the sun sounds said I was married. But I didn't have children yet. So, at the time I thought, Okay, it's now or never, because soon I will have my family, and it will be very difficult for me to do this kind of choices to quit my jobs. Goodbye, my jobs! No, so it's now, and never. My husband was still in love with me so at the time was easy to convince him that I wanted to do that. I quit my job at that time. For the beginning of EPA. I was doing voluntary work. I did all without receiving anything, so that was not easy. Choice but it was necessary. A little bit of courage and a little bit of  craziness like I was. We were doing something that's in Portugal. We don't. We didn't have a big organization behind us or supporting us. So, in terms of giving us the structure or the security to do something. So, It was like doing a house from the 0 from the ground, so didn't have any money at all. So, everything was started from the 0, and it was a little bit scary. And III admit that I was a little bit crazy, but I think and persistence, because the difficulties were, and they are so almost 9 years later it years later, 8 years later, we are here but this is a big adventure, and he in still is Jerry Hoepner: Courage, persistence, a little bit of risk taking I'm not going to say that you were crazy, but those are things that help you move it along, and I can see now why you so connected with Maura Silverman and the Triangle of Aphasia Project.   Paula Valente: Yes, she was the biggest, when I started. I also. II remember very well to be on the aphasia, because the book, because when I started, my internship gave me the book to read, and I was like I come from the school with a medical model mindset, like language and speech, and she gave me the beyond the feature read this. And let's think about this in your internship. So, when I started to, okay, let's think about these programs. This center I went to connect also was my first experience with the center personal experience. And then I contact there numerous centers around the world, mainly in America, of course, but also some here in Europe and Australia to learn from them, to learn from the programs, to learn about the programs, about the social, the about the business model, how they sustain their activities, how they communicate with the community, how they articulate with another organization. So I did a lot of contacts, and I talk with many people and Maura was one of the most the most easiest person. I don't know how to say that sorry was very available, and she talked and she wrote a letter of support. She was incredible, so that was very important to me at the beginning to start to organize the structure of our programs. I can explain how we work at the moment. what we do at the moment. But I want to say also that many things have changed through the years. We learn a lot with experience, with the errors, with the feedback. That person, either. Persons with aphasia and their families told us so. We learn every year we did changes about the protocols, about the instruments about the programs, about the number of persons that we involve, the number of Anyway, many, many changes were done. And I think we will. We will do that kind of adaptations along the way, because they are very important to achieve our goal better. Okay? So, we have to listen to be aware of the impact, the results. The feedback is very important to getting better. Okay? So, what we do now is, I think our better version of the programs but I think maybe in 2 years we will be doing things differently. Jerry Hoepner: That makes sense and I think you approach this whole process in the right way by connecting to those people. And you know everything you said about Maura rings true, right that she's available, and she is excited to get me going and to share my knowledge. So why, so I would love to hear about what you're doing right now. I think you said 9 years it's been so...   Paula Valente: We, 1916 was the founding year. I started the pilot project in 2015. So, I quick myself therebefore. So, it's almost 10 years in this adventure. It's all. But the organization is only 8 years. So, when our main objective with our association, our mission is to improve the quality of life of people with the aphasia and their families so to do, that we have to we organize our working 3 targets out all the targets. Population. Okay, audiences. Okay, we work with people we work with. And for people with aphasia themselves we work with and for family members and friends and we have we have to work to the community to a more inclusive and community communication accessible community. Okay, so we have activities actions in the these 3 main, groups. Okay, for these 3 main groups for the people with aphasia and the families we have. Hmm, 2  responses. Okay, we have resources and information we wanted to give them the more resources, more information about the aphasia, about how to leave with the aphasia, how to recover the path that the different teams that are important to them to learn more about what aphasia is  And now to leave with the aphasia So we work a lot to offer to Japanese to offer resources and information in our websites in our social networks, with lives in the Facebook, with conversations online, with the workshops, with events, to talk about aphasia, to inform, etcetera. So, we work a lot to give them resources and information free for free. Okay, that's when before EPA, It was very difficult to them to find anything in Portuguese. Okay? In the Internet, or in another ways, in books or in La leaflets, leaflets. Okay? So, they didn't have many choices, many options. So now they have. If they go to our website, to our YouTube channel, to our net, Facebook, page, Instagram, they have videos. They have aphasia friendly videos. They have informational videos. They have testimonials. They have documentaries. They have many things in English that we put legend, subtitles. So, we work a lot in this field of information and resources. Okay at the same time for people with aphasia and families, we develop programs. Okay, you call programs in America and we in Portugal, we don't call that programs but we called like therapies. Okay, it's more the term for us. Your programs for us. We call therapies. We develop different therapies to give responses to the aphasia, the necessities, communication, necessities, and the goals of people with aphasia ask us for help. More concrete, more rehabilitation help. So, at the beginning we were doing only group programs. Okay, with many different types of groups. Okay? But at some point, we saw that was not for some people that was not sufficient because they needed help to communicate better, to develop resources for themselves, to adapt better to aphasia to work some psychology, psychological problems or family problems. So, the group conversational groups, communication pho, functional communication groups, they were good, but they were not, some of them to respond to their particular needs. Okay? And we started to do individual sessions with them also. So at the moment we have like a program, a response to them. So, it's like a service. Okay? That when people with aphasia ask for our help to live with aphasia, to have speech therapy. They want to. They ask us for a specialist. So, they see if a specialist team, so they ask us to help them. So, the first thing we do is an assessment, and the that assessment includes not only the language, the impact of aphasia on the language domain, but also in the participation activities like psychological states, family members, networks social network so we have, we do a global holistic assessment and then we have a reunion. We have a session that we call decision reunion. In that decision reunion we discussed with the person with aphasia in an aphasia friendly way. So, with communication, support to conversation, communication and we show the results. We explain what the evaluation show us and we discuss in in with them their main goals and then we make together a plan and that plan is not only to do things in EPA is not that focus. So, the plan is out. What I can do at the moment to feel better, to achieve my goals. Okay, something, some things they can do with our support. But other things they can do outside. So, we also give them another options. We talk with another professionals or organizations, and we help them to make decisions and go through the process. So, if they want to do something with us, we have only three objectives in the center of the process. So, everything they do they do to achieve the objectives that were clarified in that discussion in that conversation initially and then we start doing. They can do with, not with us individual and group sessions of speech, therapy, psychology, neuro psychology, communication training. All of these approaches are personalized. They follow the pace of the evolution of the person and their needs. And we also and they are all very different. So, some of them do only individual start from start doing only individual sessions. Then they go to the groups. Some of them do only groups, some of them do groups and individual. It depends on their path, their situation, their goals, and the in the continuum of care. So, where they are okay, so with the family members is the same. They are very involved since the beginning, so we will offer to them individual or group sessions that go that will help them in their needs. So, from the beginning and along the way we are always talking with them and give them what they need. So we have also caregiver groups and communication training groups and communication training individual sessions everything to promote adaptation to aphasia, to improve the relationships, the well-being, the success of interactions. We promote also meetings with people with the aphasia, and there, another with them. Sorry. We promote. Provide also meetings with another family members and in in group sessions it makes sense. Sorry about my English. Jerry Hoepner: Totally makes sense, Paula. Well, you have a just a breadth of services that you offer, and I know those have evolved kind of over the years, but very collaborative, very person centered. It seems like, you've really thought this through. You've obviously brought upon a lot of resources to do that. A couple of things I wanted to know. One is you mentioned those video resources and other resources. We'll make sure that those are available on the show notes, so people can connect and check those out even if like. I watch some of them and just to get a little taste of what they look for obviously, I don't switch Portuguese, but just valuable just to have those resources. The other thing I'm wondering about is what's the area that you serve. I mean because it seems like you may be one of the only collaborative social programs in your area. Paula Valente: Yes, we at the moment. If you want to say something, please interrupt at the moment we serve. All the country we are. We are not a big country, but unfortunately, people with aphasia in Portugal they don't have many choices, and after the rehabilitation centers or the care the main public centers that in the acute phase they go, they get, they go there, and then they go home. When they go home, the choices to continue the rehabilitation are very few. And we in Portugal we are the only organization that are doing this work, and specifically with aphasia. We people with aphasia. So, we receive calls from all over the country and, but we are in Portugal and that is the second main city in Portugal. So, we have Lisbon. That is the capital, and then we have Porto is another big city, but in North and we are in Portugal. So, we can't see everyone in Portugal, mainly the people that live near us but with COVID we started to do many teletherapy and now we have almost 50 people with aphasia doing online services. So, at the moment, we have also online groups and individual online sessions and consultation sessions that are like a specialty consultation that we do to that families that only want some someone who helps them to decide things to understand what to do next, and that help us help them to decide what to do. So, we do a lot of consultation sessions that are more periodic and we go through. We. We've talked to them through the year to see how things are going. and to give them more information about what they should expect from the rehabilitation, from the therapist, from the communication, and give them psycho education, but also orientate them. We do a lot of that kind of in-service. Okay. So now, we have many people in our presential activities in our center. But we are the only organization in Portugal. So many people from other cities are asking for help and we are trying to go to Lisbon to create some groups and some enlistment. But Lisbon. But it's something that takes time. Okay, so it's another something that will take some time to happen. And this year as soon sound, Maria will start a group also in the university. So, it's something this kind of different points of presential group. Presential groups. I think, will be the next step to give other options to the, to the persons with aphasia in Portugal.   Jerry Hoepner: Wow! What an incredible breadth of services, and literally in in terms of area. I can't imagine serving all of the people with the face that in State of Wisconsin, which is probably smaller than Portugal. So that is that's really incredible. And wow! What a service! And I want to shift gears a little bit and talk about training professionals and students, because I feel like that might be an important step for having a broader network of people that concern people with a phage throughout Portugal. Maria, are you willing to talk a little bit about some of the trainings that you've done with professionals and your connection with the university and training students? Assunção Matos: Yeah, yeah, I can only tell you about my experience. There are other schools SLP, from my perspective. What I tried to teach my students is a bit of every type of approaches, because in one side, I know that when they go to their practices, they will find some places where the medical model is still very active, so I have to prepare them in order to know how to work with people with the phase in a more linguistic approach. But at the same time, I try to tell them about social approaches and about live participation approach. And II it's not easy, because I don't have much time to do it. But I try, you know, I'm a really big fan of the ICF so I try to prepare them to know how to work according to the ICF and how to work in the different domains the ICF suggests at the same time. We have established the Protocol with the IPA at our university, the University of Avairo. So, my final students, some of them those who want to work and wishes to do their practices in the field. Some of them are going to the EPA for 16 weeks and they do their practices there, and also during that that the time they have to develop an investigation project. So, most times I try to see with Paula we share the needs of the IPA, and we try, you know, to go and to work with the students and try to do some investigation that has an impact for the EPA and for the colleagues who work there. And this is this is great work. At the same time, just to finish me and Paula, we have been doing the SCA. The supportive conversation with adults in Canada and since then, we are doing lots of lots of workshops with the health professionals in many different hospitals. I'm also trying to do some investigation about it, because we don't have it in Porto. Well, so I tried to involve my master students and we are, you know, working together, trying to change minds trying to change the settings in order to people with the face you to leave better from the beginning, when they wake up in the hospital. If they have their health professionals prepared to communicate better with them. We read it from other countries, and which really believe it. So, we are trying also to make some changes and I've started also last year. Doing some SCA work with the other students from other courses. In my university we have nursing students. We have physiotherapists. And we have radiology students. So, at the beginning of the of the year we are doing some online courses to prepare them before going to their practical settings and communicate with the people, with aphasia, or with other communication disorders. So, this is my experience. This is what we are trying to do. Jerry Hoepner: Such important work I can't imagine. I've had so many kind thought leaders and researchers and clinicians that have guided me in this process, and that it wait so much of that groundwork out. So, I just can't imagine building that from the start. And what you're doing is so important. Assunção Matos: This year we are planning to start group therapy with people with the face, you know, because I am at the moment I am 100% at university. So I left my hospital and I really miss my patients and I miss, you know, to do the to be an SLP in practice And because there are not many groups in the country, as Paulo was saying. So, we are trying to organize group therapy for people with aphasia, maybe to do also some work with their family members and the idea is to do the group therapy and trying to do some investigation at the same at the same time. Now it's better going to be the challenge for this year for me. Paula Valente: I just want to say that at the beginning we were offering some workshops and training for the professional health professionals about aphasia, about how to communicate, and other topics that are important from for them to manage better the person with the aphasia since the beginning and we started to see that the health professionals. They don't have time to do training and they don't have money they don't have. They don't want to invest in this kind of training. They want training, but they want that accessible for them so it but the accessible means free without costs and preference in their setting. So, we have to go there to give them the training, because if they have to go some an another place, they don't go. So, where LPA was finding these things and was okay, what we can do. So, one of our works was to find funding programs to fund 2 projects that are, that the main objective is train, the health professionals to communicate. And so along these lines, we did a lot of free training in settings like hospitals and rehabilitation centers, and main mainly financed by those kind of funds. Assunção Matos: Let me just highlight that we are not doing this training alone. So, we are involving people with aphasia in the training. So, we, me and Paulo, we explore the more theoretical parts and then we have people with the aphasia, with us who are the trainers in, you know, in in practice. And II also would like to highlight that this is something that we have tried from the beginning to involve people with the phase in their family members. our Vice President is a woman with the aphasia we have some family members that belong to the Board of EPA. And we from the beginning. The idea was, as Paula already said, work with them and for them and I think this is something that is really is really important. And it's very, you know, for us it's very good. It makes us feel very good about it. Jerry Hoepner: Totally agree. And I mean, it is really impressive that the amount of work that we've been certainly important work. And I get the feeling that the 2 of you probably don't sleep a whole lot. You're certainly doing a lot. I don't know a lot of good things, and you're doing them the right way. So maybe I can shift gears one more time. To talk a little bit about the business end of things. cause that's a part of building from the ground up.  Would either, if you like to start talking about your model. Paula Valente: Yes, since the beginning we wanted to be a social entrepreneurship project. So, what is that? We want to solve a social problem that the public services weren't solving. So, we have innovative responses, services, resources but we also have business model near underneath that because we wanted to. We thought, and I think I'm sorry about my English. I can't I my English day. II feel like I have a aphasia because it's like II know everything. I know what I can. I won't say, but I can say it. I don't speak English every day, so I'm sorry I'm not in the academic field, so I don't have many, many opportunities to train my name, my English, what I am saying our goal is to be sustainable and I personally believe and I think that the EPA boards are completely aligned with this is that the solutions that EPA offers to people with aphasia are not only our responsibility to sustain, to provide is something that is a responsibility from all is responsibility. Okay, I, Paul, sound the board. All this, the people involved that we have the responsibility to, because we started that. So, we have the responsibility to provide the organization, and guarantee that all is working. But in the end, the solution doesn't depend only on EPA, we need the community to achieve our goal. We need the people and their families to achieve our goal. So, everyone as responsibility in this this is, I don't have anyone with aphasia in my family. I could have aphasia someday but  is not only my responsibility to bring this to the community, or somebody that has aphasia is our responsibility, because in the end some of us really have aphasia. My family member, my neighbor, also is our responsibility. So, when we started this organization, the social organization. We want it to be sustainable. But we don't want it to be depending on funding on the States because many of our social organization in Portugal. They have the tradition of being funded by the States. They are. They have a lot of funding that comes from the States and that is a problem, because states they don't have many money to owe it. So, they don't do the better job because they don't have money sometimes. Sorry about my English. So, we thought, if you want to do better than the State, we don't,  If they have a responsibility. We want them to participate, but they don't have the only responsibility we have the wrong responsibility. But the piece, the person with the aphasia and their families that are beneficiating from our services. From these services. From this organization they also have to compensate. And as organization, we have to be aware that to be accessible to all okay, we have to be open to different kinds of participation. So, people with aphasia will compensate will pay for some services in different ways, in different measures and that was the difficulty we had to the term to at the beginning. We have to think about how to do that. So, at the moment, we have different recipes.   Jerry Hoepner: If we put maybe multiple different funders sounds like that are contributing. Is that what you mean? Paula Valente: So, we go get money from different our services, clinical services, our programs group programs, okay and individual programs. So, people with aphasia pay for part of it. If go do fundraising to pay another part and our and our objective, our goal is the community, the municipalities and the state pay another part. So, we don't have to lose our sleep. Doing fundraising is very difficult in Portugal, I think, from what I learned from other centers, our reality is different in Portugal. We don't have many we don't have access to fundings and programs and investments. And the philanthropic minds is not something very easy in Portugal, very available. So, we do fundraising in Portugal and do fundraising to help people with the aphasia. What is aphasia? What is that? So that is very, very, very, very, very difficult. So, we need to involve people with aphasia. So, they pay for their services for our services. They pay for our therapies, but they don't pay for resources. They don't pay for information. They don't pay for workshops for some of if events that we do that are open and they are invited to come. But therapy with therapists that we have to pay. They have to pay also we have services. We sell courses some of online courses. We did. In our websites, you can see mainly in Portuguese. But we have online courses with very good programs, very good professionals, international colleagues that help us to do the courses. They are another source of income, not a big one, but they help. We did a translation of some communication books from Aphasia Institute, and then we sell them to give us also some in income. So, we have members of our association and pay a contribution. Yes, like every year they pay a contribution. So, we have, some associates that do pay an annual contribution. We do a lot of fundraising and we try to develop more services to, not to people with the aphasia, but professionals that give us income to sustain the organization. So, it's a hard work. But it's in the beginning, because we, it's difficult to involve the municipalities and the States. In these solutions we have to prove that they are better, or they have major impact in in the lives of the persons with the aphasia, but also in their pockets the state pocket, because we have to prove that our support, our kind of approaches make more difference and the people with the aphasia that stay in the State. The public services consume more resources during more time And they don't go. They don't achieve their goals in the end so we are now trying to show the Government our model of work may for the in the future they maybe support some incorporate some of these approaches in their public services. So, it's another way to support. Jerry Hoepner: Yeah, that's it. I was going to say, yeah, that's a lot of work to do. I mean, you're providing all of the services you're providing a lot of the fundraising and providing a lot of education to students and professionals throughout the country at no charge in many cases. So certainly, this is a grassroots ground up kind of work. it has been a really fun conversation. And I think we did continue this conversation for hours. It sounds like, but unfortunately, we have to close it up at some point. I just want to see if there's any last thoughts that you want to share with our listeners. Assunção Matos: I just want to say that it looks like it is a lot of work but I really believe in what I'm doing. I still dream Paula is doing one of my dreams, but I still dream that in the future, if I have aphasia, I will find one of my students doing the best job with me. This is my, this is my dream. That's why I believe so much in what I'm doing in And I'm always trying, you know, to move on into and to do different things and best things because I really don't want to face the difficulties people with the aphasia yet face in Portugal, because it's different to have aphasia in Portugal, or to have aphasia in Australia, for instance and I want to do my best job so I can enjoy it in the future.   Paula Valente: I just want to say it's really worth working on a live participation approach, because it really makes all the difference in the people. It's an adventure but it's worth it. And I hope that this conversation inspired other colleagues to do the same, or to continue doing the same. Jerry Hoepner: Absolutely. I think that's a great way to end. Thank you both so much. You've been just great to have this conversation with. Really enjoyed it, and I know that our listeners were will enjoy it like you said. I hope this inspires someone else to take on this kind of work. So, thank you so much.   Assunção Matos: Thank you, Jerry. It was a pleasure. Paula Valente: It was a pleasure. Thank you for the opportunity. Jerry Hoepner: You're welcome.   Jerry Hoepner: On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.   Resources: Online courses with national and international lecturers: https://ipafasia.pt/formacao/ Mobile application for communication support and functional and social interactions:  https://ipafasia.pt/aplicacao-movel-da-afasia/ Info-graphic videos: https://ipafasia.pt/videos-informativos/

I'm Ellen Bernstein-Ellis, Program Specialist and Director Emeritus for the Aphasia Treatment Program at Cal State East Bay and a member of the Aphasia Access Podcast Working Group. AA's strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Dr. Kelly Knollman-Porter, who is a 2023 recipient of a Tavistock Trust for Aphasia Distinguished Scholar Award, USA and Canada. She will discuss how her interest in auditory comprehension and severe aphasia led to her work on reading comprehension.   Guest bio Dr. Kelly Knollman-Porter is an associate professor in the Department of Speech Pathology and Audiology at Miami University. She directs the Neurogenic Language and Cognition lab, where her clinical research focuses on the development of supports and strategies for adults with aphasia to facilitate reading and auditory comprehension. Her research also explores the subtle reading processing differences exhibited by adults with aphasia through eye tracking technology. Dr. Knollman-Porter directs the Miami University Concussion Management Program, where her secondary research focuses on the development of assessment measures and treatments to manage the cognitive and communication challenges often associated with mild traumatic brain injury. She has over 30 years of experience working directly with adults with acquired brain injury. Listener take-aways In today's episode you will: Learn about how wanting to help clients with severe auditory comprehension challenges motivated our guest to pursue her doctoral degree after 15 years in clinical practice   Consider some of the challenges SLPs face in assessing reading in clinical practice using current standardized measures and learn about some advantages of incorporating a reading questionnaire and close observation for getting a better understanding of your client's individual reading style, preferences, and needs.   Explore the contribution of text to speech (TTS) to the dual modality model for supporting reading success at the book level and some of the critical factors to consider when implementing this strategy with clients.   Investigate how eye-tracking technology can help us gain insight to an individual's reading strengths and patterns. Show notes edited for conciseness and clarity Ellen Bernstein-Ellis  00:10 Kelly, let me just pause and say welcome! Thank you for being here. Kelly Knollman-Porter  01:02 Thank you for having me on the podcast. I'm so happy to be here. Ellen Bernstein-Ellis  01:05 I am so excited you're here today. And as we talked, we always have a pre-meeting where we get to plan what we want to talk about in these podcasts, and as you know, I'm so excited to talk about book clubs and reading strategies. Thank you so much for being our guest today. Kelly Knollman-Porter  02:23 Thanks again, Ellen. And I have to thank you for your foundational work in the area of reading.  You can look back at a lot of the articles that myself or my research team have published and we reference you quite a bit. So thanks for your work also. Ellen Bernstein-Ellis  02:39 Thank you for that kind, kind mention. I was very fortunate to partner with Dr. Roberta Elman to create the Book Connection at the Aphasia Center of California and be part of that body of work. We like to start with an icebreaker to give our listeners a chance to get to know you. I will open by asking you to share how the Tavistock Trust for Aphasia Distinguished Scholar Award has or you think will impact your work? Kelly Knollman-Porter  03:06 First of all, I'd like to just take a moment to thank the Duchess of Bedford and Nicole Campbell from the Tavistock Trust for giving me this honor. I was just so surprised and excited to hear when I was given this award. I had the lovely opportunity a couple of years ago at a Clinical Aphasiology Conference to meet both of these amazing women. I've been so impressed by the work of the Tavistock Trust. It's not just work in the UK, they have spread this out across the globe. They really have done so much to not only help people with aphasia, but also help educate the public about aphasia, help us as clinicians get connected, and as researchers get connected in order to stay abreast of more recent research that's coming out in terms of helping people with aphasia. I am just so thankful and appreciative of receiving this honor from this great organization. But how will it help me? I can honestly say that right now we're in the process of starting a new study  and through the support at the Tavistock Trust, we are going to be able to provide funding to help support these research studies and hopefully get some of these funds back into the hands of our participants. I'm excited to keep that research moving through their support. Ellen Bernstein-Ellis  04:42 That's great. That was a really nice and gracious recognition. Yes, we're so appreciative of the work the Tavistock Trust has done. How about if we open by sharing a little bit about your professional journey? I think you considered yourself a non-traditional doctoral student.   You said you returned to get your doctorate after about 15 years of practice. Tell us a little bit more about what you were doing when you decided to return to your doctorate. And what were your passions that inspired you to return to school? Not an easy decision, I would guess. Kelly Knollman-Porter  05:19 No, it wasn't. I can honestly say I wasn't looking for it. I was very happy in clinical practice. I worked in a hospital for 15 years before coming to academia. I loved working in the medical field. I loved collaborating with other rehabilitation professionals, dieticians and physicians. I was very happy working in these environments. But Miami University actually reached out to me. They were wanting to further develop their adult program and they said, “Hey, will you come to academia and share some of your clinical knowledge and also lead the Miami University Aphasia Support Group?” They knew I had always had a long interest in working collaboratively with people with aphasia and clinically. So they asked me to come. I have to admit, I turned them down a couple times. And then finally, I made the big plunge and said, “Why not try it?” I wasn't really seeking it out. Originally, however, I was reaching a point where I was becoming frustrated with some of the reimbursement issues we were facing clinically. When working with people with aphasia, I sometimes felt like insurance was dictating how much treatment I could provide and how long I could provide it, even though I felt like many people could continue to make progress. I just felt like my hands were tied, and I was restricted. That was frustrating to me. I have to admit, when I came to academia, I was thinking, what can I do in order to explore this further? How can I potentially contribute to the research base in order to provide evidence to show that people with aphasia can continue to make progress, not just months after diagnosis, but 5, 10, 15 years? Because as a clinician, we've all seen it, absolutely. We know that people with aphasia want to continue to actively participate in life activities. And they can, if given the opportunity and the support. So, when I made that transition to academia, I quickly made the decision to go back and get my PhD. Primarily focusing on clinical research, specifically with people with chronic aphasia, Ellen Bernstein-Ellis  07:52 I am sure that there are listeners out there who may be sitting on that fence as well thinking, Should I do it? Should I pursue this doctorate? I just want to acknowledge and honor the challenges of being a doctoral student, especially while also being the parent of young children, but I just think it should be recognized. I was wondering, what was the best advice you got from your mentors? Because I'm sure you reached points in that process where you wondered, was this the right thing? And I want to support listeners who are out there thinking, “Can I do this? Should I do this?”  Kelly Knollman-Porter  08:30 It definitely required a team. When I decided to go back get my PhD, I had a 10 year old and a five year old. That just requires a lot of work, going to things after school for them and keeping your family a priority, but yet still working full time getting your PhD while commuting. And coming back, a special shout out to my spouse, who helped me keep all the balls up in the air. My family came along. I had amazing support from my in-laws and my parents, in terms of helping pick up the kids when needed. But I'm not going to lie, it was a challenge. And there were times when I wanted to throw in the towel. I wanted to say, “You know what, this is just too much for me to do right now.” But I did have people that came alongside me, that kept encouraging me, saying “It's okay, stay the course, what you're doing is good, and don't lose faith.” I have to give credit to Aimee Dietz. Dietz was my dissertation chair and she was very encouraging, supportive, and understanding that I was a mother and I had a life outside of PhD and work. She respected that. It was funny. She ended up getting pregnant at the same time and had her child. So I think we kind of supported each other through that. But one thing she said to me that I always remembered because she knew I loved clinical practice. I was like “Amy, maybe I should just go back to clinical practice?” And she said, “Kelly, you realize that your research is going to touch more people then your clinical practice.” Not downplaying clinical practice at all. But she said, “Your research has the potential of spreading information not only across our small geographic Midwest area, but also across the country and across the world.”  Ellen Bernstein-Ellis  10:35 What a wonderful piece of advice. No surprise, what a lovely mentor to have. Kelly Knollman-Porter  10:39 Absolutely. I think I told you this before, there was one very difficult day that I was having. My family was sitting around the dinner table and the house was a mess. I had grading to do and I said to my husband, “I'm going to quit, I'm not going to get my PhD.” And my 10 year old daughter was sitting there and her name's Anna. And she said, “Mom, what would you say to me if I told you I was going to quit something?” Ellen Bernstein-Ellis  11:11 What a wise 10 year old. Kelly Knollman-Porter  11:13 And at that moment, I realized that people were watching and other women might be watching and saying, “Hey, stay the course, persevere.” I am proud enough to say that that same daughter just recently graduated from vet school with her DVM and I hope that my perseverance helped her persevere also. Ellen Bernstein-Ellis  11:36 I love that story. Thank you for sharing it with our listeners today. Your doctoral work originally focused on the treatment of auditory comprehension in severe aphasia. I know that was one of your clinical loves. I want to recommend to our listeners since we can't cover everything today, your 2018 article,  we'll put it in the references of the podcast show notes, about intensive aphasia auditory comprehension treatment. Why don't you share how you became involved in reading comprehension? Because you started out in this auditory comprehension world, right? Kelly Knollman-Porter  12:13 Absolutely. Well, again, I really feel like comprehension is instrumental. There's been some work done that says people with auditory comprehension deficits, the more severe the auditory comprehension deficits, the greater risk of decreased success in rehabilitation outcomes. So I always had a passion for exploring auditory comprehension and different potential treatments to facilitate comprehension with people with chronic aphasia. But Aimee Dietz gave me that opportunity to do that. But it was interesting. During my dissertation process, I actually found out that my son had a pretty significant dyslexia. We kind of suspected it with him growing up, but then when you hit kindergarten, you really start to see the reading challenges kind of surface. And I remember talking with Amiee about reading. During that time, we were able to get my son connected to a great reading program that explored different compensatory supports to help facilitate any reading process, one of which was text to speech technology. And at that time, Amiee was collaborating with Karen Hux from the University of Nebraska on a potential reading study. And she says, “You're so interested in reading right now and you're interested in aphasia? How about combining those two loves, and getting involved with a reading study?” And the rest is history, that kind of landslide into a lot of research collaborations over the past 12 years that I've been involved with. But my son Eric did inspire that because seeing his success with text to speech with dyslexia, it made me think, why not text to speech with people with aphasia? What about that dual modality presentation?  Ellen Bernstein-Ellis  14:15 That's great. I also think you're showing us yet again, how often our personal journeys inform our research and clinical paths. I think that's a beautiful example. Reading has been repeatedly shown to impact quality of life for individuals with aphasia. They tell us that so often, but it's often challenging for clinicians to allocate the limited clinical time to assessment and treatment. Reading treatment takes a while to do so. I feel like I'm asking you to address the million dollar question here. But what are your recommendations on how to manage this challenge? And what are some of the challenges in assessing reading? I've alluded to the time, but why don't you elaborate? You've done a deep dive here. Kelly Knollman-Porter  15:06 Absolutely. And it is challenging because first and foremost, I find that a lot of our standardized assessments will try to tap into assessing the reading challenges, but it really only scratches the surface. I haven't found a really great standardized assessment that I can use and rely on that really helps direct my treatment course, You have to use a variety and you have to do some that you just make up on your own based on how exactly that person is responding. But generally, if I'm going to assess, I first have to start by having a really in-depth conversation with the person with aphasia or their care partner. First of all, you have to find out if reading is of interest to them, of course,and the types of reading materials that they like to engage with. I think about people in our Miami University aphasia support group. I have one individual who would read a novel a week prior to her stroke. I had another person in our group who said to me, “Kelly, you know what? I never read books.” It was not something of interest to him. You have to treat those two people very differently. You have to find out what their interests are. That's always where I start--with just an interview and talking with them about aphasia. And then I talked to them about their interests in terms of “Are you comfortable with technology? Are you not comfortable with technology?” I actually give them reading tasks. When I assess reading, I of course, start at the word level, and then creep up to the sentence level and add more complexity and length. But when I give them a paragraph to read, I don't just look at, did they get the answers correct or incorrect? I'm not only looking at accuracy per response, but how long does it take them to process that multi sentence information? So for example, if I gave them a four sentence paragraph to read, I watch them very closely to see how they're attacking that reading task. And that doesn't take that long out of your assessment time. I watch where their eyes are moving. I watch to see if their eyes are regressing back within a sentence while they're reading. And if I notice that they're really struggling, I also say to them, “Tell me, what are you having difficulty reading right now? Can you point to the words that you're struggling with? Can you point to the words potentially that you're skipping? Tell me about this process, and try to tell me how it's different from the way you read before.” And sometimes we underestimate what people with aphasia can tell us about their reading experiences. I have found that a lot of the people that I have worked with can be very specific about what they're having difficulty with. Now, there's always that small population that might not have the awareness. But it's still the majority of them that can. I was just working with a gentleman last week, and I was like, “Show me what you're having difficulty with.” And he pointed to the words that he struggled with, and that helped me understand. Are you having more difficulty with content words? Are you having more difficulty with verbs? Are you having more difficulty with articles? What is it about this process that's  making it hard? Because many times people with aphasia can read that paragraph very slowly and very carefully and end up with a high percentage accuracy in terms of performance, but if it's taking them five minutes to read a four sentence paragraph, it is too fatiguing, it's too much. And they're going to end up avoiding getting back to reading things that they want to read for pleasure. Ellen Bernstein-Ellis  19:18 Right, because the burden is too high. Kelly Knollman-Porter  19:21 Because the burden is too high. I really feel like if we can look at these things clinically, we just need to take a little bit of time to talk to the people and actively watch how they're attacking that reading task. Ellen Bernstein-Ellis  19:37 If I circle back briefly to the impact reading has on quality of life, your 2015 article does a beautiful job of describing the contribution of access to reading to the quality of life. This was a qualitative study that interviewed six individuals with aphasia to hone in on their individual reading preferences and supports. But before you describe these results, I'd like you to share with the listeners your reading assessment survey. You just talked about listening carefully and asking questions. I think that's harder than you're making it sound. But you've given us this tool that is an amazing springboard. Many of us probably have just informal tools, lists of questions that we've developed on our own over time. But in that article, you actually attach this beautiful, clinical tool. How did you go about developing this initial reading survey that you do? Thank you for including that in the article. That was wonderful. Kelly Knollman-Porter  20:46 Oh, absolutely. A special shout out again to my research team, Karen Hux, Sarah Wallace, and Jessica Brown. We spent many hours of our meeting time creating this questionnaire. Ellen Bernstein-Ellis  21:02 But that's great, these great clinical minds all coming together, embracing this questionnaire, planning to put it together, that's beautiful.   Kelly Knollman-Porter  21:10 Absolutely. I have to encourage everybody to try to get to be a part of a research team. We're stronger together than we are in isolation. I have the utmost respect for each of these women. They have taught me so much. We each brought to the table unique strengths. All four of us are unique in our own special way. And like I said, I've learned so much from them. But we bring that when we're creating our research studies. We always start with a rough draft. And then we question each other. We say, well, I've seen this clinically, or I think about this from a research perspective. I definitely brought to the table my clinical experience in working with people with aphasia, but then Sarah did also, so too Jessica, and so too Karen. Just working through what we saw were challenges that people with aphasia might experience and what we've found clinically to develop that questionnaire. Ellen Bernstein-Ellis  22:11 So, you created this questionnaire with a variety of sections that helps someone systematically go through understanding that person's reading preferences and strengths and try to get a sense of what their profile is, right? That's your starting point. And then you take it from there. Kelly Knollman-Porter  22:28 Exactly. What do you like to read? Do you like to read text messages? Do you like to read novels? Where do you like to read? How do you like to read? Do you like to hold a book versus do you like using technology? What are all the different ways that you personally like to read? I can honestly say one thing that we learned from the qualitative study, I know I'm jumping to that, was everybody has their own unique reading experiences. There's not going to be a one size fits all approach to the assessment or the treatment of anyone with a reading challenge. You will not find a cookbook approach to this. You have to do it on an individual basis. And if you do, I think the outcomes are going to be stronger. Ellen Bernstein-Ellis  23:20 Let's circle back to that 2015 article, we'll jump back and forth. Could you describe some of the key takeaways from that study? Maybe you could explain why you think that dual modality model, which we started to allude to earlier with text to speech, is so important to supporting reading success? That's part of my takeaway from that 2015 article.     Kelly Knollman-Porter  23:45 I wish I could tell you that in 2014, when we were initially planning this qualitative research study that we were thinking about TTS. I was from a distance, but we weren't actively looking at text to speech (TTS) at that time. But one thing that my colleagues and I felt we had to do first, if we were going to explore reading research more, we had to go to the people with aphasia to learn what they wanted. So, before we took our own personal opinions about what we thought people with aphasia needed in terms of reading, we thought we should start with a qualitative study and find out what they wanted and what they needed. And you know what, that was such an important starting place for our research. Because again, we found each of the people that I interviewed had their own unique needs, but yet every single one of them passionately wanted to read. They wanted to get back to reading and they wanted to read books. They wanted to read books about romance and they wanted to read about horror stories. I'll never forget one of our participants. She told me that she liked to read Stephen King novels. She laughed and says, “Kelly, you couldn't handle that.” And it's true. I don't like those scary stories. But, they wanted to read. They want to learn more about aphasia, but they just want to read what everybody else is reading. Ellen Bernstein-Ellis  25:23 You want to read what your peers are reading.  I will always remember this story where one of our book club members at the Aphasia Center of California was so excited at a book club meeting because he had taken the book that we were reading, I think it was Shadow Divers at the time, to the golf course. No one usually approached him and chatted with him. But he actually had a couple guys come up when they saw the book and engage with him in discussion. So it became this beautiful bridge of connection. I can't communicate as well, but they had this awesome commonality to share. It was just what they were interested in. So that example of just wanting to do what your peers are doing because there's such joy in being part of that reading community. One of my favorite parts of that 2015 article is also the clinical reading framework that's on page 19. It helps a clinician start to think about how to implement reading supports and strategies. I think that is a beautiful contribution. Could you describe that model for our listeners?  Kelly Knollman-Porter  26:30 Sure, of course, you start with the questionnaire, you start with asking them what they want to read and what they like to read. And then you do an informal assessment. And then, as we walk through that framework, you establish personally relevant goals, based on their unique reading needs and experiences. But then as you're considering treatment, you have to think about lots of different avenues that you can potentially go down. And that's going to be based again on their needs. Specifically, are they interested in technology? If they're not interested in technology, then that's going to take you on one route, but if they are interested in technology should you consider text to speech? If they're not interested in technology, will picture support facilitate their understanding of the written text? So basically, looking at personalizing the treatment approach. And going through a process of trial and error, looking at the length of the reading that should be used, or the complexity of the reading materials, and again, gearing treatment towards their unique personal needs. That's kind of what it's all about. Ellen Bernstein-Ellis  27:50 You really provide a very clear framework, and I think that always helps us with our clinical thinking-- to know what questions to ask and how to break it down. A wonderful follow up to that 2015 article, is the 2022 article that compared comprehension, processing time and modality preferences for individuals with and without aphasia when reading books using text to speech. Could you start by explaining or describing what motivated your work to be at the book level?  So often, we start with words and then sentences, but here, you took this big, big leap and started at the book level. Kelly Knollman-Porter  28:31 I'm going to swing back to my 2015 article real quick, if that's okay. Because I have to admit, one of the participants in that study gave us direction to go the TTS route first. So, of those people that we interviewed in that initial qualitative study, only one of them was reading more after his stroke than before his stroke. And this gentleman, he was in his mid 40s at the time, and very into technology. I remember when we were doing the interview with him, he was adamant. He was like, “Kelly, text to speech works!” So of the six people that we interviewed, he was the one that inspired us to start looking at text to speech more-- that eventually led to all these other studies. Because he said, “I've read a novel.” He laughingly told me that he read Fifty Shades of Grey, and he also was able to get online and, through text to speech, order things through Amazon or different mechanisms like that. We started exploring text to speech technology and the degree to which it could help from a dual modality presentation. So that kind of got us on that track. My colleagues and I explored the use of text to speech at the sentence and paragraph level to see if it helped. We really had mixed results, I have to admit. We were finding that sometimes it helped some people, but it didn't help all people. And we were almost getting a little frustrated with what we were finding, and we were feeling that we were hearing from clients. I have to admit, I've run into clinicians all over the country and they're like, “Yeah, text to speech works.” But we weren't seeing those strong outcomes with our research. It was right around the pandemic time. I said to my colleagues, “We're gonna have to take a big leap here with our research, instead of just looking at the sentence and paragraph level, why don't we just jump to books?” We know that people with aphasia want to read books. We have a feeling that the text to speech might help them at the book level. We know that this research is going to get a little muddy, there's going to be a lot of variables that we can't control for, but let's try to do a study based on what people with aphasia want. So we took this big leap of faith and did this book study. And this one was where we decided to control many factors in terms of having them read a certain section and then using text to speech and then read another section and then use text to speech for another section. There was a lot involved in it. But that's ultimately why--because people with aphasia told us that they want to read books. Ellen Bernstein-Ellis  31:45 I know we're going back and forth. But these topics are all integrated. Let's take a moment and ask you to talk a little bit more about text to speech and what you've learned about using it for individuals with aphasia. You started to again allude to some of the things, particularly the variability across people. There are pros. And there's cons. Before we dive in, I want to refer our listeners to this nugget, this beautiful little gem, that I found just last week. It was in the March 2023 ASHA Leader, and it's with your co authors Sarah Wallace and Karen Hux. The article lays out some of the considerations to take when introducing a client to text to speech technology, like how to do it in a systematic way, how to explore and allow for the individualization that is necessary, that practice is necessary. It's a great clinical perspective article. We'll put the link in our show notes. But what do you want to say about the lessons learned with text to speech? Kelly Knollman-Porter  32:47 Absolutely. It takes practice when you're considering using text to speech with a person with aphasia. First of all, you have to see if they're interested in using technology. If they have access to technology, that's your first question. And then, can they access the device physically? So lots of things have to be taken into consideration. If they show interest in using the technology, you need to sit down with that person with that technology that they choose. If that's an Android device, if that's Mac device, if it's a laptop, if it's an iPad, if it's a smartphone, you have to bring their device to the table and see to what degree they can access the necessary text to speech applications that are needed in order to use it successfully for reading tasks. If they cannot access it, then you need to take a step back and create an instruction manual to help with pictures and aphasia friendly formatting, in order to give them a step by step method to access that technology. So often, we start to use technology intuitively. We think everybody else should be able to use it that easily. But we have to make sure that the person can turn the device on. A lot of older people also have decreased circulation in their fingertips and sometimes when touching the app, they can't get it to trigger, so they have to warm up their fingers before accessing it. Ellen Bernstein-Ellis  34:33 I'm so glad you mentioned that because I can actually personally relate to that one. Because these nuances are so important. , I don't know if they're nuances, these challenges that you may not realize until you actually sit down and work with the person. Kelly Knollman-Porter  34:48 Absolutely. So when I know someone is interested in this, I always start with pictures--a detailed instruction book that shows you step by step what you have to touch in order to access that TTS system. I put it in a binder with a plastic coat covering over the top, so that they can have that manual sitting right there by their device. And then we practice with it. We say, “Okay, now I'm going to show you how to access this text to speech technology. Now you show me if you can do it using your manual.” And we go back and forth. We're not even to the reading part yet. You have to first access the system. If they show that they can then access it, then we actually get into playing with the different TTS features. So anything, from the speed of the voice presentation on TTS is crucial. You have to find that ideal speed for that person that's not too fast, and not too slow. That's going to help their processing. So, playing around with the speed. Also playing around with a voice. Do they want a male voice? Do they want a female voice? Do they want one with an accent? You'd be surprised people are very particular about the voice that they want. And then, also exploring the use of highlighting. Do they want to have highlighting? At the single word level? Do they want each word highlighted as it's read? Or do you want the full sentence highlighted? Or do you want no highlighting, because some people don't like the highlighting. So there's a whole sequence of steps that you need to go through in order to determine if someone is going to be able to access the TTS system, and then, if they're going to be able to use it successfully. And that does take time. And it takes experimentation and setting up a system for a person, letting them try it on their own. And then having them come back and ask, “Okay, what did you like? And what did you not like? Can we change this at all?” So it can be adaptive, it might change over time. We don't want to just give one structured TTS system to all people. It won't work. Ellen Bernstein-Ellis  37:17 I think that dovetails beautifully with my next question, which is, if we circle back to that 2022 article, I was struck by some of the variability across participants and that you were able to embrace that as a researcher and look at what that means.  The variability across people reinforced your approach of taking a strength-based model approach when assessing reading performance for your clients. Are there other outcomes you want to highlight from that study? Kelly Knollman-Porter  37:49 Absolutely. One thing we found overall, is that for the group as a whole, TTS technology helped them process the written materials faster, without compromising comprehension. I'm gonna say that again, so they could access and process the written information faster, without compromising comprehension. For some of them, that was huge, right? Because they were able to read that book with less time, and hence less fatigue-- Ellen Bernstein-Ellis  38:27 ---that reduces that burden we were talking about earlier, right, that sense of fatigue and burden.  However, so keep going. I'm sorry. Kelly Knollman-Porter  38:34 So we found it helps process the information faster. But as a group overall, we found that it did not improve their comprehension. And that's been kind of the thorn in our heel, more like, why is this text to speech not facilitating comprehension? Because if you look at the theory on dual modality, if you're presenting something auditorily and through writing, that should facilitate comprehension, right? But we weren't seeing that with all participants. Now, some of that could be the varying degrees of complexity of their unique type of reading problem that they had.  Then we did have a couple people that actually did show improvements in comprehension.  We had one participant that had a 20% increase in comprehension with TTS compared to the read only condition. We had another person with like a 10% increase. So this works for some people, in terms of facilitating comprehension, but not all. So we felt like we're getting close, but we're still not quite there. And that's why we're needing to continue to do more research.   Ellen Bernstein-Ellis  39:50 I just want to take a pause.  This research was all done during COVID. I want to thank you for how clearly you describe the training and materials needed for this study in that article. I have watched some of my colleagues trying to do research during COVID. They did some incredible things. Looking at that article made me wonder how did you do that?  I want to shout out your tenacity in accomplishing this during COVID. I think you mentioned that it gave you multiple “front porch opportunities” to solve tech challenges, because you had to go to the house of your participants, literally sit on the porch and try to fix the iPad, or the Kindle, or the whatever, and hand it back to them. So thank you for just hanging in there during a time when it was really hard to do research. I'm looking at the time, and I want to make sure that we get to your eye fixation behaviors and processing time in individuals with and without aphasia article. I've just covered a lot at the moment. Was there something you wanted to reflect on in terms of your “porch moments”  before we jumped to the eye fixation study? Kelly Knollman-Porter  41:11 I think as a speech language pathologist, it's kind of in our blood that we have to be very adaptive and flexible. Sometimes you have to jump in the car and drive and sit on the porch, especially. This is another challenge with using technology, if an update happens, and it totally changes the formatting of an application you're using all the time. Now, if a person with aphasia cannot always adapt to that, I would get a call, “Hey, Kelly. Something's popping up here. And I can't get rid of it.” So I would just hop in the car, and I'd say, put everything on your front porch. I will be there. I'm just going to sit on your front porch, and I will deal with the update. Ellen Bernstein-Ellis  42:02 That could be cold in Ohio. I'm picturing you sitting there with gloves and in a coat trying to fix things. Kelly Knollman-Porter  42:11 Yeah, that was about it. But that's our skill as speech language pathologists. Ellen Bernstein-Ellis  42:17 You showed a lot of dedication. You keep giving a shout out to your team and your lab.     Kelly Knollman-Porter  42:24 I have a special shout out to Mackenzie Pruitt, who worked on that study. She was a masters level student, and she was right there in the trenches with me. I have a great team. Ellen Bernstein-Ellis  42:35 I want to go back to this eye fixation behaviors study. While we're not likely to be able to assess eye fixation in daily practice because the equipment and technology is beyond what we would have in our clinics or private practices, but your results really hold clinical significance for understanding reading, processing strengths and challenges. Do you want to describe some of the highlights from that study? Kelly Knollman-Porter  42:59 I think one of the biggest frustrations when you work with someone with reading challenges is you really are not 100% sure how they're processing the written text. We're assessing them, we're watching them, we're seeing their response to the questions. But what are you having difficulty with? You can ask questions, you can watch their eyes clinically. But one thing that eye tracking technology has that I'm grateful for is, it showed me how people with aphasia process written text. And we wanted to specifically not just look at the word level, there's some great research out on word level processing and sentence level processing. But we wanted to take a big leap and look at multi sentence processing. So what are those eyes doing? What did they fixate on? What are they regressing to, and again, I'm going to give another shout out to Drew Bevelhimer. He was also a master's level student that was working in my lab at the time, who, again came alongside me to help get this eye tracking technology going. This really did show me how unique the reading challenges that people with aphasia have when reading multi sentence information. We specifically looked at how often they had within word regressions, like within a longer word within sentence regression--so when their eyes look back to another word within the sentence, and then how often they look back to a previous sentence. And one thing that that really showed us is with the use of text to text to speech technology, their numbers of regressions significantly decreased. So they did not have to regress as much while reading, which again, resulted in a decrease in processing time. Another thing that this study showed, which I and my colleagues thought was really interesting, we actually brought in a group of neurotypicals to do this study also. When we used the default text to speech voice rate,  we actually found the opposite results with neurotypicals. When using text to speech, set at that default speed, like right around 150 to 180 words per minute, they actually had more regressions with text to speech than in the read only condition. Ellen Bernstein-Ellis  45:39 So, you have to match the speed with the person. Is that where this is headed? Kelly Knollman-Porter  45:43 That is exactly where that's headed. It really reinforced to us how you have to consider the speed of that text to speech voice. Because if you do not have the appropriate speed, it can actually have some detrimental effects in causing more regressions. That's one thing, looking to the future, that my colleagues and I are going start looking at-- exploring how to get that synching better in terms of the eye movements with the rate of speech. Ellen Bernstein-Ellis  46:17 So is that is next in your research, where you're headed, Kelly Knollman-Porter  46:21 That's where we're headed., Ellen Bernstein-Ellis  46:23 I'm going to look forward to that. I just want to say that your body of research on reading and reading comprehension, and supporting and using strategies and understanding the patterns and challenges that people with aphasia have and how they get them back in the game to support them. I just think it's such a valuable contribution. I really appreciate this beautiful body of research. And there was another March 2023, ASHA Leader article, besides the one on text to speech, that describes how reading impacts return to work. It's an article that tells a story about your efforts to support a teacher who was working to return to the classroom. I'll put that link in the show notes too, because it's a beautiful collaborative, “we're going to do this as a team” story. And it wasn't easy. But it was very much supporting the individual goals and journey of your client. Do you have any parting advice as we wrap up for clinicians who are going to assess and work with reading with their clients? That's what this whole show has been about. But what else do you want to add we end?     Kelly Knollman-Porter  47:36 Don't be afraid to explore reading. I know it seems intimidating and overwhelming, because it is challenging to figure out what's specifically the problem, but I can honestly say that if you invest some time in it, the outcomes are going to be worth it for your clients. I look to some books studies that I've done here within our Miami University aphasia support group and, and I have many members that prior to the book club study that I did, had not picked up a novel for 15 years since their stroke, and through adaptive materials, and again, shout out to Roberta Elman's work in the Book Connection materials that her and her group have created. We've used them a lot here at Miami University. But through those adaptive materials that she's created, she's opened up a world of opportunity for people with aphasia to be able to access books. Giving people that opportunity to get back to reading materials that they'd like to read is just really rewarding. Ellen Bernstein-Ellis  48:55 Thank you so, so much for this conversation and for all the work you're doing. And we'd like to close with one kind of broader, big picture question. Kelly, if you had to pick only one thing that we need to achieve urgently as a community of Life Participation providers, what would that one thing be? Kelly Knollman-Porter  49:23 When we talked about this question, I was slightly discouraged because my ultimate reason for going and doing research was to provide research that will lead to greater reimbursement of services for people with chronic aphasia.  I hate to say it, but here are 15 years later, that's still my big takeaway point. We need to find better ways of helping people with aphasia in the chronic phases get reimbursement for services that they so desperately need. We also need to talk to clinicians across the country. We have to be very careful in terms of how we give services to this population. They can still make progress. They can still make gains. We just need the support in order to make that happen. I'm just going to throw one other thing out there. This pertains to the ASHA Leader 2023 article for the teacher that was trying to get back to work. We need to find more opportunities for people with aphasia to still have part-time jobs without losing their benefits, because they're caught between a rock and a hard place. If I go back to work a little bit, I'm going to lose my benefits. I remember in that article, Christine Bowles, who we interviewed, shared working full time is too hard, but I still have more to give. I still have more to give. I'm not done yet. I'm only in my 40s. Why can't we give people with aphasia more opportunity to work without losing benefits?  Ellen Bernstein-Ellis  51:09 Thank you for that message. I think it's critical and one that a lot of people face and think about. So thank you for bringing that up. And for participating today. It's been a wonderful opportunity to talk about your work. Your passion and excitement comes across so much. And I'm going to thank our listeners for listening today. And I just want to remind that our references and resources mentioned in today's show, just see our show notes. They're available on the website, www dot aphasia access.org. And there you can also become a member of our organization and support the podcast and all the other great work that's being done by aphasia access, and you can also browse our growing library of materials and find out about the Aphasia Access Academy. And if you have an idea for a future podcast episode, email us at info at Aphasiaaccess.org. For Aphasia Access Conversations. I'm Ellen Bernstein-Ellis. And thanks again for your ongoing support aphasia access   References and Resources The reading intake questionnaire discussed in this interview, is accessible here: https://aphasiaacc.memberclicks.net/assets/docs/Reading%20History%20Questionnaire-Knollman-Porter-AphasiaAccessPodcast.pdf   To see examples of adapted book club materials mentioned in this episode, go to: The Book Connection on the Aphasia Center of California website: https://aphasiacenter.net/the-book-connection/   Hux, K., Wallace, S. E., Brown, J. A., & Knollman-Porter, K. (2021). Perceptions of people with aphasia about supporting reading with text-to-speech technology: A convergent mixed methods study. Journal of communication disorders, 91, 106098. Hux, K., Knollman-Porter, K., Brown, J., & Wallace, S. E. (2017). Comprehension of synthetic speech and digitized natural speech by adults with aphasia. Journal of Communication Disorders, 69, 15-26. Knollman-Porter, K. (2023). Navigating a Job's Language Demands After a Stroke. Leader Live. The ASHA LEADER, 28(2), 42-46. Knollman-Porter, K., Bevelhimer, A., Hux, K., Wallace, S. E., Hughes, M. R., & Brown, J. A. (2023). Eye Fixation Behaviors and Processing Time of People With Aphasia and Neurotypical Adults When Reading Narratives With and Without Text-to-Speech Support. Journal of Speech, Language, and Hearing Research, 66(1), 276-295. Knollman-Porter, K., Brown, J., Hux, K., Wallace, S., & Crittenden A. (2022).  Reading comprehension and processing time when people with aphasia use text-to-speech technology with personalized supports and features.  American Journal of Speech-Language Pathology, 31, 342-358. Knollman-Porter, K., Dietz, A., & Dahlem, K. (2018). Intensive auditory comprehension treatment for severe aphasia: A feasibility study. American Journal of Speech-Language Pathology, 27(3), 936-949. Knollman-Porter, K., Hux, K., Wallace, S. E., Pruitt, M., Hughes, M. R., & Brown, J. A. (2022). Comprehension, Processing Time, and Modality Preferences When People With Aphasia and Neurotypical Healthy Adults Read Books: A Pilot Study. American Journal of Speech-Language Pathology, 31(6), 2569-2590. Knollman-Porter, K., & Julian, S. K. (2019). Book club experiences, engagement, and reading support use by people with aphasia. American journal of speech-language pathology, 28(3), 1084-1098. Knollman-Porter, K., Wallace, S. E., Brown, J. A., Hux, K., Hoagland, B. L., & Ruff, D. R. (2019). Effects of written, auditory, and combined modalities on comprehension by people with aphasia. American Journal of Speech-Language Pathology, 28(3), 1206-1221. Knollman-Porter, K., Wallace, S. E., Hux, K., Brown, J., & Long, C. (2015). Reading experiences and use of supports by people with chronic aphasia. Aphasiology, 29(12), 1448-1472.   Wallace, S. E., Hux, K., Knollman-Porter, K., Patterson, B., & Brown, J. A. (2023). 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Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, and Thursday Night Poets.  I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Lauren Schwabish. In this episode, we'll be discussing Lauren's work on groups for parents with Aphasia and person-centered approaches to primary progressive aphasia interventions. Biosketch: Lauren Schwabish M.S., CCC-SLP is the owner of Neuro Speech Services, a private practice based in Northern Virginia, specializing in person-centered assessment and treatment of cognitive-communicative disorders related to stroke, brain injury, mild cognitive impairment, ADHD, and other neurologic and neurodegenerative conditions. Lauren received her Bachelor of Science degree with Honors in Communicative Disorders from the University of Wisconsin-Madison and holds a master's degree in Communication Sciences from Hunter College of the City University of New York. She is licensed in the Commonwealth of Virginia and state of Maryland and is a certified member of the American Speech Language Hearing Association. She has over 23 years of experience working in hospitals and acute rehabilitation centers and is passionate about providing meaningful and accessible health education about the brain to patients, families, and health care professionals. Lauren is committed to empowering communities with evidence-based information and best practices in brain health behaviors.   Take aways: LPAA is vital to understanding what the client wants and needs from you as a clinician Parents with aphasia encounter many of the same challenges that all parents experience as they're raising small children but this is further complicated by aphasia While work and other community obligations may go on hold after aphasia, parenting doesn't go on hold People with aphasia who are in the process of raising children benefit from peers who understand what they're going through People with PPA are still connected to their family and kids and need support in navigating everyday conversations that are necessary to parenting and participating in their children's lives Group therapy provides a safe and supportive environment for people with PPA to find supports or relate to others that have similar experiences as them Learn how to be “a purveyor of hope” for individuals with PPA and their families Interview Transcript: Jerry Hoepner: Well, welcome, Lauren. I'm really excited to have this conversation with you today. And I thought maybe it would be a good thing. If we kind of begin by introducing our readers to your experience as a speech language pathologist, and kind of what led you along this life path of participation approaches to Aphasia and that person centered approach which is really central to what it sounds like you do in your in your workplace setting. Lauren Schwabish: Yes, thank you so much for having me. I'm a big fan of aphasia access and the podcast is on my it's on my feed routinely. So it's really an honor to be here. I am like I said, a speech language pathologist for 23 years. I started out in I worked in New York City in a really big city hospital. There was, you know 2 campuses, a thousand beds each. It was literally everything under the sun, and I think that was my first experience. In really getting to the heart of what a what drives a person, what a person is all about because I was so different from the population. I came from a different place. I had a different educational trajectory. You know, this was a city hospital that had, mostly an underserved population, and it was in New York City. So it was tremendously, culturally diverse and one of the things I recognized instantly was that the way I would sort of drive compassionate and effective care was to really understand who I was working with and so I think from the from the jump, you know, just really having the humility to say, I need to sit and listen and understand this individual so that I can support their recovery from you know stroke, trauma you know, sort of acute illness. That was something that really just ended up making sense. So that was sort of my foundation. And then I moved into acute rehab into a hospital in Northern Virginia, where I am now and really just found, even though I was in a sort of a very medical setting, that connecting with the individual was absolutely the most important thing, and it was how I really felt that I could you know, show others how to do effective therapy. So I didn't know that it was life participation approach, but it was just really about understanding what the person needed to communicate about and in the hospital it's a different setting than in the community where I am now in private practice. But 21 years later, when I started my own private practice, that's when I really found LPAA as a principal, and could start to put some of the theory behind what I'd been doing all along. Jerry Hoepner: Nice, you know. It's funny. I was just having a conversation before we started this conversation, with Tami Howe, who is going to be doing a future conversation about the role of environment and accessibility in communication with individuals, with aphasia. And one of the things that we kept coming back to is exactly what you said, just getting just spending time listening and getting to know who that individual is as a starting point for really recognizing authentically what that person's wants, needs beliefs, values-  all of those things are and I think that's just a wonderful starting point for thinking about life participation, because it's easy to jump straight into the therapy or the assessment pieces. But what we need most is just to put our listening ears on, and really find out who that individual is and what makes them tick. So wonderful place to start. Lauren Schwabish: Yeah, and I would say that sometimes, especially when you know thinking about that acute rehab or acute care setting when someone's, you know, potentially very limited in their life participation, what they can do getting to understand like you said their beliefs. You know. What were they doing before they got to where you are? What can they teach you about? It's really honoring their strengths and sort of who they are prior to this acute illness. And so you can see them as that individual and they oftentimes can tell you more about that than you could. They may be able to from the from the, you know, sort of compromise place that they're in and it just feels right, you know, that's the one thing I tell. You know, when I was in the hospital, and I was working with therapists were so concerned about productivity and so concerned about billing. And just oh, my gosh! I don't think I have time to do this, and for me it's like you have nothing but time to honor this aspect of it, because once you figure out what makes this person tick, what excites them? What kind of music they wanna listen to what they don't like, you know, that's the foundation. And it shouldn't be something that's an afterthought to the skilled, clinical, hard skills that you have. It's really the first step, and it just when it works, it works well. So I think people just have to know that they have to have the permission, right from their environment, from their you know department, their supervisors, their peers, that this is actually very much the most essential ingredient to being an effective therapist. Jerry Hoepner: Yeah, and what a refreshing way to start. I'd like to say that all therapists in the acute care context and that's the context where I worked for many years. But I'd like to say that they all get that but you're right. People get caught up in the fact that we only have a few days with these people, and we have a little bit of time, and we don't necessarily have time to devote to finding out who that individual is but what you're saying is that's central to being successful in helping them move forward with anything. So I really appreciate that as a grounding starting point and it really makes sense why, we're going to have a conversation today about what we're going to have a conversation about. I know Lauren, we talked about a couple of different topics. One being your passion for working with parents, and the topic of parenting with aphasia and that might seem like a leap to talk about that, and person centered approaches to primary progressive aphasia but when we think about that grounding principle of meaning, the person where they're at finding out what they value, I think it's going to be easy for our listeners to tie those pieces together. Lauren Schwabish: Definitely cause it's ultimately about a family, right? And it's not just a person with aphasia, but the person with aphasia exists in some sort of family unit, whether it's a partner, a friend, neighbors, kids, grandkids. And so, yeah, one of the things I have been privileged to be in is those 2 spaces? So I think I think, yeah, we can tie them together. And also just to hear that what this looks like with kind of 2 different sort of different populations, you know, thinking about parents with aphasia where the prognosis is typically so favorable, right? It's just lots and lots of improvement. They're typically younger, you know, we're seeing gains and everyone feels fairly optimistic, and that person with Ppa is going in a different direction. Right? But person-centered approaches are vital for each. Jerry Hoepner: Yeah, that I totally agree. Family is what ties these topics together, and I'm sure we can think of a whole bunch of other related little niches of therapy that are tied together by family as well. So I'm excited to jump into this conversation. And I'm gonna begin with talking a little bit about the topic of parenting with aphasia, just a really interesting and important topic. So why is it so important to have communication groups or parents with aphasia? Lauren Schwabish: I why, I would say I'm a parent, so I can, I could speak with experience, that parenting itself is a 24/7 situation. And so when you have a parent who's been very suddenly affected by aphasia it is the one task, you know, work goes on hold. And sometimes, you know, operations in the community go on hold because the person's recuperating. But parenting really doesn't ever stop you know, children with, you know, whose parents have had a stroke or brain injury. You know they're up in the hospital. They're part of the therapy process hopefully, and they're in the community, or they're back at home with that individual and so I do think it's really important to give people who are raising children, and I will say, you know, we have lots of people who have raised their children. They're still a parent with aphasia. But this is sort of specifying that these are people who are in the active process of raising younger children and those are the people that are in the communication group that I run through the National Phase Association. When I speak to those parents they really are. They are seeking a safe and compassionate environment to discuss how to raise kids right? And that can range from talking about, how do you discipline a kid when you have aphasia, how do you talk to the teachers that a parent teacher conference? You know, how do you engage? How do you re engage your parenting skills when they've been sort of taken over by family members necessarily. But how do you sort of reenter that role again? And I don't know that for the parents that come to my group. They don't have that in their own parenting community, right? So, the friends that they had who were parents prior to their aphasia. They're not necessarily the same fit as other parents who have aphasia. So, I think that the group environment that we've cultivated is that safe space to talk about, you know, and highs and lows of parenting. Let's face it. Parenting is really hard. So sometimes it's, you know. Everyone just wants a place to kind of vent and again when you're venting with aphasia, it's not always smooth, but it feels really good, just like parents who don't have aphasia. Jerry Hoepner: Yeah, what a what a terrific summary. And in response to that question, I I'm just gonna go back to the one of your earlier statements, because I think this is so true. When we think about someone in the rehabilitation process work stops and the community services, and all of those kinds of things stop, or at least they change significantly. But parenting doesn't stop as a fellow parent I can. I can guarantee I've got kids who are in college and just outside of college, and parenting still doesn't stop, but to be in the thick of raising small children. That that's definitely a a unique challenge so speaking of that, what are the unique challenges and needs of a person with aphasia who's also raising a child. Lauren Schwabish: Yeah, you know, when I think about the things that the parents in my group have raised, it's really I mean, it runs the gamut you know some of it is how do you read a book to your child when you cannot read how do you, you know, manage things like. There's one gentleman who's awesome. He had a stroke when his youngest daughter was out, and I think she was like a newborn, or she was essentially an infant. And you know, how do you navigate watching them start out? He was joking kind of at the same level language wise and then she's just accelerating. And you know, how do you navigate that? So, as the child's language is growing? How do you facilitate your own child's language development. We've had one of our survivors is she's made tremendous progress. Many years since she had her stroke. She had a situation where her daughter within high school, and there was a child who committed suicide, and she said, I don't know how to talk about this with my child, but I know I need to right, and that kind of stopped me and my tracks as a parent of high schoolers to think. Gosh! This isn't so much about the aphasia. But how carefully we have to word a conversation like that. Right? So it's really having those serious high stakes conversations. And then some of it's, you know, not as heavy, not as hard. It's kind of how do you, How do you reintegrate yourself with, you know, kids at the playground. How does your kid explain aphasia to their friend who's coming over for a play date, you know. How do you ween a baby, you know, sort of like all different things. So this is where it's sort of like, is it a group for people with aphasia. Is it a parenting group? Well, it's kind of everything, because sometimes we just wanna kind of talk about stuff. And it's you know, last month we talked about, you know, if I gave you a plane ticket and you could go on vacation, you know, where would you go? And would you bring your kids or not? Which was fun. Some people were like, of course, it bring my kids, and some people are like, Heck! No, I'm leaving them at home. I'm going on vacation by myself. So it's really fun. It kind of is the group itself. We really start out with 2 principles, which is what is I have these little smiley face cards, you know what's making you happy and what's kind of a struggle, or, you know, making you feel sort of mad. And that's just a really nice place to launch from. Jerry Hoepner: Yeah, wow, terrific. And one of the things I kept thinking when you described the loss of kind of kinship or a connection between themselves and other parents who don't have aphasia, who are a parenting, I'm wondering about the relationships between the different parents with aphasia and each other from a peer standpoint. And what that looks like. Lauren Schwabish: Yeah, one of the women. She's in North Carolina, and she found the group after it had been running for a couple of months, and she says every time she's like, I'm just so glad you guys are out here because I did not know that there were other people like me. So, some of it is just seeing that there's young people who also have aphasia, who are also raising kids. So, some of it's just that environment. One of the things that I think was the most incredible was there's a speech pathologist who's in Texas who runs or she's in a program that think it's sort of an inpatient rehab a residential program. It sounds incredible. She had 3 or 4 young parents with aphasia who had recently come there, and she logged on from that facility and those folks were able to see survivors from, you know, one year, 2 years, 5 years, 7 years. And so, some of it is be able to show people who are just learning, you know, just getting a couple of words. You know, may be able to say the name of their child. Maybe you know one or 2 word phrases to see and experience what recovery looks like. And that was amazing. And one of the women who is in the program has since discharged home. And now she logs on, and it's fun to see her recovering quickly. But I just think that sense of like, and you know we hear it all the time like you just have to keep going. It is a marathon, it is. It is arduous right? And so for them to have that support and the spectrum of recovery. I think that's one of the things that is the most meaningful. Because, you know, it's of course, post direct depression, anxiety, especially for a younger survivor who's not only lost you know their language abilities, but probably it's also facing the fact that they can't return to work. That was one of our topics a couple of months ago. It was someone who was like, yeah, I hope I can get back to work and then come to find out the whole group shared, you know what they used to do for work, and a large majority of them. In fact, I think all of them, you know, in addition to parenting being tough, is they've lost their careers. Which is also a challenging topic. But, at the other hand, some of those long-term survivors say, but you know what? Instead of working, I'm able of, you know, volunteer at my kids school. I'm cheering on the sidelines. I'm attending that concert, and she said, I don't know that I would have had that if I was working. So, you know, I think the silver lining aspect is great, too.   Jerry Hoepner: Yeah, absolutely. I think it's so critical. I mean, even outside of the the topic of parenting with aphasia, to have to see people who are at different points along the recovery. And maybe this will come up when we talk about primary, progressive aphasia, too. But, for example, one of the things that we see at aphasia camp is often that people will identify with someone who's a little bit further along in the journey, and they might take sort of a mentorship kind of a role just to be able to say, this is what's coming. And you know, things get better and a little bit easier to handle. It's so positive from that standpoint. But I've seen the reverse true as well to be able to say. You know, this is a person who's longer, or, you know, further along on their primary progressive aphasia journey, and to be able to just know. Okay, so this is coming and I can kind of ground myself and prepare myself for these things. I think there's something really valuable about being able to see that continuum like you described. So Lauren Schwabish: agreed. And just that sense, you're not alone. You're not the only one who has this experience. Jerry Hoepner: I'm interested. So I mentioned that sometimes there's these pairings of people along the continuum. Do you see those relationships growing? And do people connect with each other outside of group or have particularly close connections with someone within the group. Lauren Schwabish: Yeah, well, I think the group is pretty new. So, we're sort of cultivating that I would say, one of the things, though, is, there's one woman shared that now that her kids this was back in, I think August, her kids had gone back to school, and she was like, I don't know what to do with my time. And another survivor basically sent me a list of ideas. She's like a support group Guru. She attends some in the Uk, some here. She really knew of a ton of resources, and she sent those to me to pass on to this other individual. So that's probably a great example of, you know, one person wanting to really cheer on the other one. There's that same woman who offered the resources is lives in the Chicago land area, and we had a one person who moved to that area was really fun. She ended up giving us a tour of her house on our in our group, which is really great. But that was a connection we made where we said, Hey, you know what? What are you know, the the strokes, survivor communities like in that area in Chicago. So that was really neat, too. So I think you know anytime I feel as a facilitator when I have a chance to match someone to either to peer to peer, or just for resources. In general. You know, one woman is like, I really wanna read. She has a 14-year-old, and she's just like there's a lot of reading that goes on with like middle school and high school and so we were just sort of like troubleshooting together, you know, on the side, just hey, you know, here's an audio book that we might want to try or here's something you could pair with an audio book. So, you know, it's it's just we have a space to share how you're feeling resources, I think, become evident when you're in that supportive environment. Jerry Hoepner: Yeah, absolutely. I think those are perfect great examples of that connection between people and that resource and mentorship that they can provide to one another one another. I was kind of internally laughing when you you mentioned the middle schooler with reading, because I was thinking about when your children reach high school and college, and they begin to pass you up in terms of knowledge and intelligence. That's a hard time for any parent. Definitely for someone with aphasia or we're even talking about how to handle like cell phones and social media and technology. And like you think of how fast pace. That is, I can barely keep up. How does someone who has, you know, issues, maybe even with like sensory overload you know where there's video games going on and when you're really at that point, and you have to say something how do you find the words, you know? And so actually, one of our, you know, again, longer term survivors like, you know what? I just text my kids. And we have a couple of emojis where they know what I'm saying, you know. So I think it's really neat. And that way, too. It's just sharing those examples of like modern day parenting. And what does it look like when you have aphasia? Yeah, that's fantastic. One of the things I was going to ask you about is the kinds of topics that come up. But you've shared a few social media and how to support someone with reading and all of those topics. But what other kinds of topics typically come up in these groups.   Lauren Schwabish: I think for the parenting group, it's really about, how do you keep your language skills going? Because I think a lot of these folks are, you know, not necessarily continuing to receive skilled interventions from speech pathologists. And so some of it is. Just try to like, how do I use my environment? Or how do I have strategies to sort of resume participation? There was one woman early on in the group, so it was a smaller group and she was going to meetings with her High School senior about college and graduation. And so we were sort of just coming up with, like, what are some words that you'd wanna have ready, you know, application. And you know, tuition. And so even just kind of brainstorming a way to support her participation in that. So that was something that came up. A lot of it is sort of what are your kids excited about? And I think that that's one of the things I always close that group with is gratitude. Just because it's such a wonderful it's brain, healthy activity. And almost universally the parents are talking about their kids. They're grateful for their kids. They're grateful that they got to you know that their kid was well behaved at school, or they're grateful that they got to go on vacation, or they're grateful that they want to swim meet. So sometimes it's also a chance to brag, you know, to really shine a light on the things that your kid is doing. You know, that's a fun thing to be able to do. And again, in a fast-paced environment, you know, when they're with their neighbors, or they're with the kids at, you know, other parents at school things just go quickly. And so when it's a time to just slow down, and we'll just sort of popcorn it around the Zoom group. Where everyone has a chance to just share something that their kid is up to and that's been really neat to one of our members is from Canada in BC, and so we didn't really know, you know, geographically where he was. So I was. You know we were looking at the map, and we were figuring out where everyone else is from, too. So sometimes it is just it's about that community and some hot topics that are coming up. Weather was one of them where everyone was talking about you know the wildfires where he was, or how do you, parents when it's so hot out. You know, it's really typical struggles. It's just, in a way, it's probably not that different from a normal parenting conversation. We just use language support and give people tools. They need to be successful contributors to that conversation. Jerry Hoepner: That's a pretty strong litmus test for being meaningful and person centered to be able to say, it's just the stuff that every parent talks about. Now, this is just a community that scaffolds that for people with aphasia, so that they are a part of those conversations and can be a part of those conversations I love that that's fantastic. Yeah, really wonderful. Well, knowing what you know now, and other, what other resources would you like to see available? To this community of individuals with aphasia from a parenting standpoint? Your wish list. Lauren Schwabish: We talk about this, my wish list. So one of the things that I'm I'm trying to, you know. It's hard because we only meet once a month. I wish we could meet, you know, more routinely, but is, of course, when you have kids it's really hard to plan, you know and get together. But we've talked about this over. Several different meetings is, what would we like to have available? I think certainly books or resources videos that are for parenting, about parenting that are aphasia friendly. So like, how do you, parent? You know a toddler? I know, I read books when I was raising my kids. You know, I read books currently about like teenagers and mental health. You know what resources are available that are aphasia friendly. And where can we find those books and do those books exist? And can we write those books? So some of it is just typical parenting advice but made aphasia friendly. That's something I would love to see. And we have a couple of different books that people have recommended, and I think we said we could link those in the show notes so people could try to. You know, find those. But of course, this is probably one of those moments where someone will get inspired and create them, you know, create that resource in the future. I would like to have some tip sheets again, based on what my parents in with aphasia, have recommended about how to engage in conversation in the community when it comes to parenting. So, for example, how do you talk to the pediatrician during a checkup? Right? How do you make sure that your voice is heard, that you can fulfill that role of parents versus someone who's just sitting in the room when there's you know, someone else speaking? How do you talk to a teacher at a parent-teacher conference? So some of it I think it'd be again scripts or recommendations or advocacy. I have a like we've all seen them sort of. I have aphasia, you know, cards, and we I've shared that with that group just to try to say, like part of your job is to be a presence in the school community, right? So like, how do you do that? So even like a guide? Again aphasia, friendly, something that would allow them to participate in these pretty routine parenting situations. And then I think, what I'd really love, and I don't know, you know. I hope someone out there is thinking about. This, too, is to think about how to record stories or videos with just those words of support. So that if you're out there and you have a young parent with aphasia on your unit in a hospital where you could go to Youtube, or you could go somewhere and say, Hey, you know what? Here's words of wisdom from people who've been where you are. If I could record a snippet of the conversations that we have, or the words of wisdom that one parent passes on to another. It would be so. I think, reassuring in a really scary time I think it would be inspiring. You know nothing that's too heavy a lift that doesn't need to be, you know, a feature like film, but just something that would be a collection of stories that someone could watch and just gain a little bit of sense of, okay, you know I'm not alone and people have done this before me, and they got better. And I can, too. Jerry Hoepner: Yeah, that seems to be a recurring theme that I'm not alone, and I can connect with people that really get this. Yeah. II love your wish list, and I hope that some of our listeners are inspired to create those resources. And you know, as we were talking, II just couldn't help myself. I jumped on to Google Scholar, and I wanted to see what was out there for research in this area. There's not a lot, and I know that Molly Manning has written a little bit about this, and I think Brooke Ryan has done a little bit of work recently, but there's not a ton out there. So for all of you academics out there, too. Like what a terrific topic! For someone to research into, to learn more about this. So I'd love to get those testimonials and words of parents out there as well. So feel like we're just scratching the surface of this, and a lot of work needs to be done. But what a great kind of call to action! That the need for groups for parents with aphasia. So I really love, love that conversation, and thank you. Anything else that we're missing, or we should add, before we move on. Regarding. Lauren Schwabish: No, it's like, I said, running, the group has been wonderful. And I just think, if you even have 2 people, you know, it doesn't take like we have people from all over the country that come to the National Phase Association meeting once a month, you know, the second Wednesday of the month. But it doesn't take too much to operate it, you know, Zoom Link. And so I think even Matching, or you know, Peer matching someone else just to recognize that this is a very this is a population that's gonna live with aphasia for a long time, and you know they're the needs are high. And so even if you can think about a peer mentor, or some kind of connect in your greater community. You know, this is really a population that's thirsty for it, and they want it, and they will. They will pursue it on their own. Once you sort link them up together, and then hopefully, the rest of us can come up with some great resources to fulfill that. You know that that connection. Jerry Hoepner: Yeah, excellent. And certainly, if there are people listening, thinking, what should I do? I want to do something related to parents. Wow! What an opportunity to step into! There's plenty of plenty of room for that support to go around. So really inspiring. Lauren, if it's okay, I'm gonna shift gears and talk about a very different conversation. But one that, we said, is definitely linked through that kind of family. Principle, family centered principle. And that's the conversation about person centered care for individuals with primary, progressive aphasia. Can you begin by just sharing a little bit about your perspective? What drives you, your underlying theories for this approach? Lauren Schwabish: Yes, and I will say, for my, you know, 23 years of experience. I am very new in the Ppa space, mostly because I was working in the hospital system, and that's not where these individuals are found, you know. So for me. Once I started my practice, and someone said, Do you treat primary, progressive aphasia. The answer was, of course, yes, but then it was very much a well, how right? How do I do this? And so diving into you know, all sorts of education. Looking at, you know, resources that are available. I've really appreciated some of the work on the raise framework in terms of really not thinking so much about all of the testing, but really thinking about what does this individual need to do? And how can I identify as much personally meaningful stimuli as possible, because that's the only thing we should be focusing on, right? So I think to that end also, it really clarifies what my approaches and forces me to be as efficient as possible, and then really be flexible. There's one gentleman in particular I'm thinking about where, you know, we've started out, and he didn't really require too much in the way of language support. So it was more like, what do you want to talk about and maintaining, you know, a multimodal language, practice opportunities. And then, as things have gone on and change, we've really run the gamut from like starting, you know, starting with an iPad, and you know, a higher tech, aac option, and then kind of seeing that that's not really going very well, or it is a little too challenging for this particular family, and then very quickly pivoting to something that's more accessible. So yeah, it's to me. It is it is a family centered situation, and you know it's interesting.I have a wonderful aphasia center near me, and I love them, and I refer everyone to them. But they are very much clear that Ppa and sort of that aphasia community center feeling doesn't really work well in their experience. And so I brought this, you know, again to the aphasia access community to, you know, at the Leadership Summit, and said, You know, how does this work? And it's just really complicated. And what you'd said earlier about, you know a family being able to look ahead and say, okay, this is what I want. I have found in the Ppa clients that I've had. They actually avoid that because I think they don't want to see it. It's too much, they've said, you know. And so I tried to be a little bit of a matchmaker. I had 2 gentlemen, both with primary, progressive aphasia, you know, scientists very loving wives, you know, really like they were so ideally suited to connect and it was almost like they didn't want to see this other individual, even though it would have been wonderful for them to connect there. I just found and this is probably happened in, you know, 75% of the cases I've had so far, they are reluctant to see someone else with. Ppa.   Jerry Hoepner: yeah, interesting and I think that's one of those challenging things where we have to like your principle of matchmaking, and where we have to think about how we get there, right? Because there's always things that we don't want to talk about, or we want to avoid to some extent. But there's always a a bit of us who knows there's a need for that, too, and finding ways to make that threshold of building those bonds and those relationships is definitely a part of that even if it doesn't start out with. Hey, talk about what primary progressive aphasia looks like further down the road, but just to be able to build some of those peer connections? Lauren Schwabish: and not know that, or know that you're not alone. I think that that idea that we talked about with families as well. So yeah. And what I found probably is a more successful avenue is really sustaining those family connections. So that's where I found that sometimes the community of course I want them to be able to see someone who's, you know, just as bright, who also has aphasia where things are changing. But what I found greater success in is looking to the sort of family as a community and saying, What can we really do in this contact, so that you can continue to, you know, ask your grandkids about, you know how school is going, or give advice to your you know newlywed son about you know life nowadays, you know. So, some of it is really trying to figure out how can I use those family connections? And then to me and anyone who knows Ppa knows it's so much about counseling. So really, being a provider of I would say hope and I think that that's one of the things that really is important is to say we can still have participation, meaningful life activities, even though things are getting to look a little different. And so the one family I'm thinking about. They have this beautiful vacation house on the bay in Ver. In Virginia, and you know they love to go on vacations like this is a family that lives a great life and they really feel that they have to kind of reel it in, because, oh, my gosh! You know Dad has aphasia, and you know what if? What if? What if? And my perspective is? No, we need to make sure he's still going on vacation. And here's a communication tool, so that you know we can do that safely. Or here's how we're gonna navigate his communication in that situation so that he can participate. And that's probably been a great source of creativity. And also kind of success. Is the family as community? Jerry Hoepner: Yeah, absolutely involving those family members and allowing them to make those connections, as it, you know, as if they're comfortable. And that principle of hope cannot be overstated right? Just how important that is to keep people engaged, because as soon as you start thinking about the downside that's when you want to just withdraw and kind of close in on yourself. But that hope is the light that people need to see in that moment. So completely agree. From your perspective, why is this person centered approach so crucial for a person with primary, progressive aphasia and their family. Lauren Schwabish: I think, as we see sort of the deterioration that comes. you know there's so many there's so much value. And really looking at who you're you know who you are. Who is this individual? And so, being able to remain connected to things. They are passionate about friendships they've had forever. You know things that really get them excited. I have a gentleman who is like a he was a food researcher, a food scientist, and he actually absolutely loved being in this professor role. And you know, all of a sudden. He's his family is, you know, very attentive, and they're, you know, bustling around and doing all these things for him, and he just lights up when he gets an opportunity to explain a scientific concept or look at a scientific journal, or attend a conference like we encouraged him to go, and he attended a conference, and we practice the names of the researchers he was going to meet. And you know questions he might be able to ask and I think so much of it is. You know we're looking at someone who's essentially fading away, and that's so scary. And so if I can say, who are you? You know what's important about you? What should I know? What should your family maintain? And then we build a communication support system around that I think it allows them to continue to see the individual, even though there's a neurodegenerative process. And so things like I had one client who wrote his own obituary, and in doing that he gathered all of his. You know he was he had a lengthy Cv. He had done all this wonderful work, and so it was a chance for him, and it was of his own request he wanted to do this and I just said, Let's go because it was a chance for him to relive his professional connections. It was a chance for him. Talk about you know, areas of study where he had contributed. So to me, it's really about preserving the identity and recognizing and being able to have a again a tangible communication book, memory book, whatever they want to call it. Practice words. You know, stimuli photos. Anything that really says this is who I am And so that remains a touchstone where families can say, you know, even if the level of support changes over time, we still can have that person and be that person. Jerry Hoepner: Yeah, II think that's just another one of those grounding principles. I I'm not making fun of you. When I say this, you've said who I am or who you are multiple times. And and that focus on identity is so crucial. And I think another piece I've been really into reading work on personhood, and that idea that yep, this person is fading. Their cognitive and language abilities are changing but they're still intelligent human being inside. There's still someone who deserves your time and attention, and still has many of the thoughts and kind of knowledge of their life. I think really important for families, and anyone who interacts with them to just recognize that personhood and and that identity of who they are. Lauren Schwabish: it's also so easy to see what's going wrong or what could go wrong, that I think, also maintaining someone's competency and finding ways to reveal competency to families is so important. So like my one of my clients is much better at writing than he is at initiating verbal language, and so for him we haven't texting people right? And they are sort of like rolling their eyes like he's got his phone out again. And I'm like, yeah, cause that's how he's gonna communicate with you. And he will text me pictures and videos from family gatherings. And you know, it's really become a tool that shows his competence. And so you know, that's another opportunity. And why skilled intervention is so important even in the scheme of neurodegenerative disease is because there's always something that we can do to show that person and show what they're able to do. We just have to think of the way to do it. Jerry Hoepner: Yeah, absolutely. I love that. You came to Aura Kagan's principles of acknowledging and revealing competence in a time when someone is like you said, fading and and losing some abilities even more important that we hold onto those principles. So I'm really interested. What does that look like in a session? What do your sessions? How do they look? Lauren Schwabish: Yeah, it's every session looks a little bit different. Some of it is. I just want them to introduce themselves to me. And that's usually what I'll say is, you know I'm new to you. What can you show me? What can you tell me? And what can I look around in your environment. And I'm so fortunate in the private practice I've constructed is I'm a mobile therapist. And so I get to go to people's homes. And you know, even just being in that space can tell you so much and so you know, trying to really invite opportunities. Knowing how to ask the right questions. You know a lot of those carefully constructed open ended questions and then trying strategies here and there to see what really helps support someone's language. So I have one gentleman who he's he loves cricket and you know there's really no cricket on when I'm at his house but he and I have discovered over working together that having written notes as I'm listening to him, and I'm capturing, you know, content words and keywords he's able to say I write them down, and then he and I kind of have them on the table in front of us And so with cricket, He wanted to tell me. I said, I've you know I've played it like long ago. I really don't ever get to see it. What can you tell me? What can you show me? And then giving him a a vehicle to do? That drawing was a perfect way for him to show. You know, and this is a gentleman who's no longer writing. He's actually not really using any texting, or, you know, ipad, he has all of these devices. Unfortunately, not a lot of them are. Does he really feel comfortable if he could engage with them? But again, it's about what he would like to do. But a pen and paper was so effective and so with that, as he's drawing the sort of circles, and and you know the the lie out of the pitch of cricket. He's suddenly writing numbers, you know, and then he's able to point to those numbers and express those to me. So that's one version. One of the things that I talked about at the aphasia access summit and was really fun is looking at photos on the phone. So another gentleman the one with the big family, and he's always taking pictures. And so what we had discovered was this captioning strategy where I could just swipe up with him, and because his writing is a strength, he's then able to put in the names or events of family members into the photos. And that's been really fun. So that we're really trying to find that strategy where he can continue to use the stronger modality in the context of ample stimuli, because this guy takes pictures of everything. And then, as he's sort of declined a lot of it is trying to meet the needs of the family, so making sure that they know what communication supports are. Some of it's just thinking about safety, too. You know, making sure that right off the bat, this person has some sort of identifier on them. For stuff that's starting to get lost. How do we use technology, you know. Air tags and tiles and all those cool things. How do we maintain his independence and community? And that's been tricky lately is, you know, providing education resources related to driving. And how do we know when it's time to stop driving? You know these are sort of things where I have become just a trusted advisor to the family. And so, if I have a resource, I think that's important that we recognize our roles look so different in these sessions. And that's okay, because what we're doing is we're providing again, person center care trying to highlight what their priorities are and support the family. So that they can make that happen too. Jerry Hoepner: Absolutely. Since the aphasia access summit that swiping up for the captions is something that I do quite a bit lot of my people. So I really appreciate that. I'm glad you brought that up again. Yeah, I feel like this has really brought us full circle, and with that emphasis on the family and the person as the core. Really. I mean family identity, and what that individual wants and needs to do what drives them. Seems to be at the core of these approaches, and that definitely aligns with what aphasia access and the life participation approach is trying to accomplish. So thank you for your insights and and creative ideas about this anything that we missed in terms of the discussion about primary, progressive aphasia or parenting. Lauren Schwabish: I will just say that as someone who's sort of like done this by my gut instinct. It's so wonderful when I can go to the research. Not so much for the parenting is like you said, there's you know I it's not a ton of ample of evidence body of evidence yet, but it is so reassuring to have access to meaningful research that really supports You know just an Lpa approach it as a clinician like boots on the ground. I've really valued that I've loved podcasts and resources. I've had access to in terms of counseling. I think validating that counseling is important. I'm grateful to the fact that you know we even payers like Medicare. You know that there's a space now for the role of a skilled speech pathologist to follow along and to perform therapy over the course of a neuro, degenerative condition. You know, I feel like sometimes I've heard. Oh, you know, I think I'm guilty of this when I was working in the hospital setting, and someone would come in with some sort of acute process but then there would be dementia. I really feel like I was like well, they can't learn, or you know they I was so dismissive of someone's capacity. And I have changed completely in terms of being able to say, you know what there's individuals I work with, whether it's Ppa or another dementia process. Just to be able to say there's always value in finding a communication system or communication tool to really allow that person to connect with whomever they want to and so I think the fact is that I'm in a community that, you know is is interested in that. I have a practice that is, you know, working well because of that I'm able to get paid by payers because of that. So I really think it's important for people to recognize that. We can fulfill such a valuable role and there's actually wonderful resources out there that will justify this approach. Jerry Hoepner: Totally agree. Yeah, there's always value in fostering participation. Whether that's going to help someone recover, or whether that's gonna help them. You know, in their in their decline gracefully, and to remain engaged as long as they can so totally agree. Well, thank you, Lauren, this has been a fantastic conversation. I know our listeners are gonna value your clinical insights. So thank you. And it's been really nice talking with you. Lauren Schwabish: Oh, it's been a joy. Thank you so much.   Jerry Hoepner: On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.

Interviewer info Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic communication impairments. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer.  In this episode, Lyssa Rome interviews Kate Meredith about using concepts from family and systemic psychotherapy to help people with aphasia and their families.    Guest info Kate Meredith is a Family and Systemic Psychotherapist, working for the NHS and in independent practice in South Wales. She is completing a Professional Doctorate in Systemic Practice. Kate worked for 15 years as a Speech and Language Therapist, working with adults with acquired communication difficulties. Kate's dual training enables her to support families and individuals with the impact of these changes on family and social relationships. Kate has studied at University College London, King's College London and the University of Bedfordshire. Kate worked with Giles Yeates to publish Psychotherapy and Aphasia: Interventions for Emotional Wellbeing and Relationships (Meredith, Kate. H. and Yeates, Giles. N. 2020). Kate also presented at the American Speech-Language-Hearing Association International Convention in November 2022.   Listener Take-aways In today's episode you will: Describe the importance of narrative for helping families cope with aphasia. Understand how speech-language pathologists can use genograms and ecomaps to support their LPAA care. Learn why the way speech therapists talk about aphasia matters. Edited show notes Lyssa Rome   Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California, and I see clients with aphasia and other neurogenic communication impairments in my LPAA-focused private practice. I'm also a member of the Aphasia access podcast working group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.   I'm today's host for an episode that will feature Kate Meredith. Kate is a family and systemic psychotherapist, working for the NHS and in independent practice in South Wales. She is completing a professional doctorate in systemic practice. Kate was a Speech and Language Therapist for 15 years, working with adults with acquired communication difficulties. Her dual training enables her to support families and individuals with the impact of these changes on family and social relationships. Kate has studied at University College London, King's College London, and the University of Bedfordshire. Kate worked with Giles Yeates to publish Psychotherapy and Aphasia: Interventions for Emotional Wellbeing and Relationships. Kate also presented at the ASHA convention in November 2022.   Kate Meredith, welcome to the podcast. I'm so glad to be talking with you.   Kate Meredith    Thank you for having me. I'm really glad to be here.   Lyssa Rome    So to start with, I'm curious about your transition from speech language pathology, or speech language therapy, into family therapy. What led you to make that change?   Kate Meredith    So I loved working as a speech language therapist or a speech language pathologist, as you would say in the US. It was great. I mainly worked in a rehabilitation setting, and what that enabled me to see, from the off, was the changes to people's relationships. On a daily basis, I was witnessing people coming into the center, trying to figure out who they were in relationship to each other, and that got me really, really curious. The more I thought about it, the more I thought about the ask that we put on partners and family members in those settings—so whether it's supporting people with toileting or washing, feeding or swallowing, there's so much change that takes place.    And it really made me think: What about the relationships? Are we asking about the change in relationships? Are we asking what it feels like for partners to have different roles, to have different aspects to the way they do their relationships? And as a speech language therapist, I was thinking: Okay, what does this person need in terms of their communication skills, what do they need on the ward? Do they need to be able to indicate whether they're hungry or thirsty or in pain? And all of that was important. But it also kept me thinking: What would matter most to me? If I were in this situation, if I had aphasia, if I was having difficulties with my communication, what would be the biggest impact for me? And it just kept coming back to relationships for me.    Now, I worked in the multidisciplinary team, with neuropsychologists and physios and OTs, nurses, healthcare support workers, doctors—great, great teams. But I wasn't sure that any of us really felt like we had the remit or the focus to think about people's relationships after brain injury.    When I was working in the community for a while, I started working with a neuropsychologist, who started asking questions about this with a couple that I was working with alongside him. And I said to him afterwards, “I loved those questions. I'm so glad you're asking those questions. I think about this all the time.” And he said, “Well, I wasn't doing neuropsychology there, I was doing family therapy.” So I started looking into it. And when I started exploring it, and when I got onto the course, straightaway, I thought, I think that speech and language therapists, speech language pathologists have got a really unique set of skills here that matches so well with the skills that are needed in family and systemic psychotherapy.    So starting the training, loved the training straightaway. And I always hoped that I'd be able to do something and brain injury with it, but then, when I found a job in family therapy, in a different context, actually, working with children, adolescents in mental health services, I kind of started down that direction, and love it. But I've really held on in my private practice, where I'm not working as a speech language therapist anymore. But most of my private practice work is with adults who have a communication disorder. And I find that so enriching. I just love it. And I also do a little bit of writing a little bit of presenting. And that's kind of where I got to here.   Lyssa Rome   It sounds like you very organically saw this connection between what families, people with acquired brain injuries and acquired communication disorders were dealing with, and how family and systemic therapy might be able to help them live better with their conditions. So I want to back up for a moment and ask you to define for us what is family and systemic therapy for, say, SLPs, who aren't familiar with that term?   Kate Meredith   Absolutely, because I wasn't either. I think it's more popular in certain contexts of healthcare than in others. So in the UK, it just wasn't in brain injury anywhere. So I'd never heard of it. There are different names for family and systemic psychotherapy—so some people call it systemic psychotherapy, some people call it family therapy, sometimes it's a mixture, which doesn't really help with the difficulties that people have in understanding what it is. But really what it is, is about helping people who are in relationships with each other, work together to achieve change. The idea being that change happens through relationships, rather than individuals just making a change that can that can affect everything.    The big principle of it is really that problems aren't located in people. Problems and people are not the same thing. People don't just have ownership or become the problem, they very often happen between people. So who takes responsibility for that change, if actually, the problem is happening between two people, or more than two people?    So family and systemic psychotherapy thinks about actually how relationships can support people, and how improving relationships can reduce problems and can reduce symptoms. So we're trying to provide a really safe space in family therapy and systemic psychotherapy, where people can communicate, they can make efforts to understand each other in a different way. We can think about strengths—it's very, very strengths based—but also about what the needs are, what the emotions are, and how people can be a resource for each other. So rather than thinking, you need to go and get this fixed, or you need this medication, it's actually: What can happen in the relationships that will bring about the change?   Lyssa Rome  That brings to mind a really interesting conversation that I was able to have, as part of this podcast, several episodes ago, with Dr. Marie-Christine Hallé, who really emphasized this idea that aphasia is a family thing, it's not something that just happens to the person with aphasia, and what you're describing, this idea of locating the problem, sort of outside of the person with with the brain injury and situating it within the family context, I think, is a really powerful way to think about it.    So you've been bringing these ideas from family therapy to speech language therapists, speech language pathologists, working with people with communication disorders. And today, our plan is to talk some more about some of these concepts from family or systemic therapy that can be useful for SLPs, who are working, particularly within the Life Participation Approach to Aphasia. So can you say a little bit more about what you've been doing to bring these ideas to SLPs?   Kate Meredith   Yeah, absolutely. So for me, this is this is really exciting. What I really want to help people understand, I guess, a lot of people do already, but actually, if relationships are what matters to the person, we're working with, then that's everyone's business. You know, we don't need to think of it as being something that we don't have the right to ask about. So of course, you can always train as a family and systemic psychotherapist. But as a speech and language pathologist, there are also many other things that you can do to support people's relationships after brain injury and with aphasia. And the feedback that I get from clients I work with now, from clients I've worked with in the past, is that it's really helpful to have someone who understands neurology, who understands aphasia and what can support communication alongside the permission in those sessions to make the relationships the focus. So this is really important for people, really meaningful for people. So what I guess I'm trying to do is get that message out there—make this your business, because we've got the skills.   Lyssa Rome   I first became aware of your work with your presentation at ASHA in November 2022, and you talked about ways that speech therapists could make it our work. Specifically, you talked about—one of the things you talked about—was narrative therapy, and the power of stories to help people make sense of their situation and to shape their reality. We've touched on this earlier, but part of that had to do with this idea of externalizing the communication disorder, in this case, the aphasia. So I wondered if you could go into that a little bit more for us.   Kate Meredith   Absolutely. It's one of my favorite approaches. So I'd be delighted to talk more about it. So narrative therapy is based in a kind of philosophy of social constructionism, which I won't go into too much here. But essentially, it's kind of an epistemology, or a way of understanding knowledge that underpins the doctorate I'm doing. And it really kind of lends itself to thinking about truth as being a product of social processes, rather than there being one objective truth. So that gets a bit philosophical.    But essentially, what we're thinking about here is that when we are in conversation with each other, which is largely language-based, our conversations support the beliefs that we have and our views of the world. And these events that we are in conversation talking about, they are subjectively perceived. And we link those together into stories that make sense to us. But they're rarely the whole story.    Those of us who have the power to tell these stories, to talk about events and the way that we see them, those of us that have got the loudest voices, the most power, we get to shape the stories that get told and retold. And that, in social constructionist terms, means that we get to shape truth, and we get to shape reality and how it's shared in our communities, which is a privilege that not everyone has.    When we when we do this we see, in narrative therapy we believe, that the stories that fit get retold. They become very dominant. They become the dominant narratives in our societies and in our communities. And the stories that don't fit with that dominant narrative get lost. We would call those subjugated narratives. Now, when I was learning about this in my first year of training in systemic psychotherapy, I just had this epiphany, this kind of light bulb moment of, what does this mean for the people I've just left on the ward and have aphasia, and in the most literal sense, don't have a voice. It just really kind of lit off so many sparks in my brain.    So really thinking about the place of power in this and and how people with aphasia don't get a chance to input into certain stories. I think that we can all probably think about stories that have been told about us in the past that don't really fit for us very well—it might be that we're a rubbish driver, it might be that we're really scatty or that we're selfish or that we're cranky in the morning. You know, there's lots of stories that we don't particularly like that might get told about us. And can we challenge those? Can we give an alternative version and say, well actually is not quite the whole truth and do remember this time? And actually that happened once or twice, but I have been driving for I don't know 30 years or whatever it is. If we can challenge those, then we get to kind of address that narrative and have an influence over it. But if we can't challenge those narratives about us, then we feel less well. We feel subjugated by that.    So I really started to think: Well, what are the options that are available to somebody with aphasia to tell the stories that fit for them? And how as speech and language pathologists do we support them to develop a rich narrative that fits more, that is more congruent with who they are and how they see themselves? So narrative therapy is all about this. Narrative therapy has got a series of kind of parts to it. Essentially, the first thing we're doing is hearing the problem and whatever form people can communicate that to us. We're listening, we're validating, and we need to stay with that. We need to stay with that part of the process before moving on. And when we're doing that, we're thinking about the language that people are using, the way that they're expressing it, because these things are really important later on.    The externalization part of that is about separating the problem out from the person. So the problem and the person are not the same thing. That is absolutely essential as a belief in narrative therapy. And there's some parts of healthcare where that works really well already—that's established. So if we think about cancer care, we don't call people “cancerous.” But yet we call people “aphasic.” So what happens to somebody's identity when they are called “aphasic”? It sounds like, to me that's kind of becoming quite a big part of who they are. And so it's about tending to the language we're using, when we're talking about an aspect of a person or an aspect of an illness that they have had, that then affects their communication with others, rather than making them the problem.    So I want to know: How can we make this routine in brain injury services and aphasia services? How can we talk about, “Oh, yeah, the aphasia—the aphasia happens between the two of you.” “The aphasia gets in the way when you two are trying to communicate.” “The aphasia makes it difficult for us to understand you and your needs, and what matters to you,” rather than, “Your aphasia” or “You as an aphasic.” You know, I know that language is moving on and, and I'm sure that that people are adjusting to making changes with this already. But I think it's really, really important that we think about how can we really relocate that problem from being something that is within the person to something that is cropping up between people.   Lyssa Rome   I think that's such a powerful idea. And after I heard you speak at ASHA, I started paying more attention to the way I was talking about aphasia, and where aphasia would get in the way, or how aphasia impacted, say, someone's ability to write a grocery list or to communicate with a child. There's something I think quite powerful about the ability to name it as separate from the person. It's different than I think, what I sometimes hear, which is people sort of blaming themselves for the communication breakdown or for the difficulty. So sometimes you'll hear people say, under their breath, like, “Oh, I'm so stupid,” or that sort of thing. And I think that when we say, “Ugh, aphasia is really getting in the way here, right?” That's, that's a little bit of a different message for people to hear, or maybe for people to tell themselves.   Kate Meredith   Yeah, it really thinks, to me, it speaks to me about who takes responsibility for that and who takes responsibility for the change. And if somebody is already experiencing this in every part of their lives, do we also make them responsible for owning it and, and managing it, and making amends for it. Yeah, that's a lot to put on someone.   Lyssa Rome    So what are some ideas for how SLPs might use these narrative techniques to give them, or people that they're working with, a sense of having influence over aphasia? What kind of questions can we ask people with aphasia and their significant others?   Kate Meredith    So this part of it, I find this really fun work. Okay, so what we're doing here is we're essentially giving aphasia a character. And we're doing that through making the person that we're talking with, the person who has the brain injury, the expert. Their expertise really gets raised here, because they're the one that understands it the best. So we're working with them to say, “Okay, let's understand more about this aphasia.” We could call it aphasia, or you might give it a different name. Now, the names can get a little bit profane.    Essentially, what would people call this thing that is coming along and disrupting their lives? What name do they want to give it? What does it look like to them? Do they have a vision of it? What does it sound like? Does it sound like noise and static? Does it have a color? Does it feel like it's this kind of black thing kind of approaching them? Is it big? Is it small? Does it have a shape? And what does it say? Does it say those things that you hear people saying, “Oh, I'm so stupid?” “Oh, I should have got that right.” “Oh, this is…?” Does it put words into people's minds? “You're stupid, you can't manage this situation. If I was you, I wouldn't even go out today, because you're not going to succeed at anything.”    There might be things that it's saying to the people that we're working with that get into their narratives. So can we be curious, first of all? “Tell me more about this—what that looks like, what it sounds like, what it says to you, and how can I understand that better?” And we might be doing that most effectively in a session with one or two of their family members there as well. So they can really listen in and think, “Okay, I've got my experience of it. And this is their experience of it. And wow, I'm understanding this in a really different way now.”    So then we can start to think about the influence of the problem on people and on relationships. So what does it do? How does it get in the way? How does it disrupt? Does it provoke frustration? Does it provoke anger? Does it make you feel isolated? Lonely? Does it provoke other people to engage in behavior that you find really patronizing? So can we understand what does it do that really affects your life and your relationships?    Then we can start to think about its presence. So when is it most present in your relationships? What helps it to successfully disrupt your communication together with the people that you care about? So it might be, “First thing in the morning, when I'm really tired, it's everywhere. And I can't do anything without it tripping me up.” Or, “It's okay in this situation. But actually, in these situations, when someone's trying to rush me, and I've got a queue of people behind me, then it's just there, shouting in my ear, saying, ‘I told you, you couldn't be in this situation, you may as well go home.'” So really thinking about where are the contexts where it's most present, most visible, most disruptive?    Now, an interesting part of this process is finding out whether or not aphasia might also have some benefits to it. Because the problems we have in our lives often do have some useful side effects. Not always, but it's worth being curious about that. So if aphasia had any benefits to it, what would they be? And some examples of that might be “I can just not worry about my emails anymore. You know, emails were always really stressful to me. And now, you know, my partner's told everybody, look, don't email them, speak to them on the phone. And that's great, because actually, that used to be something that really used to stress me out.” So it's worth kind of just exploring, kind of with a bit of playfulness. Is there anything good about this? Does it do anything useful for you?    The important part or another important part of this process, is looking at what we call the relative influence. So by this stage, we've understood a lot more about what the problem does to people what the problem does to relationships. But actually, the relative influence is what influence we as people have on the life of the problem. So here, we're not just thinking—this is crucial—we're not just thinking about the person with the aphasia, but actually, everybody around them. How can everybody influence aphasia? So when is at least present? We've heard a bit about when it's most present, but when is it least present? When is it hardly even noticeable? And this is often to do with people having stepped up.    So what happens to aphasia when John writes down key words for Millie? Does aphasia get a bit smaller? Does it get a little bit less troublesome? What happens when Angela puts her phone down to look at her dad and talk to her dad? Does aphasia find that something that it doesn't like quite so much because it can't quite have its own way? What happens when David gives Phil time to finish rather than interjecting? So are these things that start to reduce the power that aphasia has to disrupt?    When we're doing this, we're looking for other people to think about their agency over aphasia. So it doesn't feel like a massively oppressive problem in all circumstances and in all contexts. But we're thinking about the unique outcomes that can be threaded together. So actually, most of the time, it's awful, but when that happened the other day that it didn't really feel like it was around, or it felt a lot smaller. Okay, so let's start to thread this together. And let's start to think about other stories that we can tell that are healthier. And through that, we identify the actions that people can take, the tools that they have to reduce the power of aphasia. But again, crucially, not just the person with aphasia, the person with aphasia and everyone else. So we can think about how power is produced when everyone learns aphasia's ways, and uses their tools as a collective, as an army, as an uprising, to fight the power of aphasia.    Now, we have speech language therapists, speech language pathologists, have got so many tools, with working with families working with conversation partners, to really say, “These are your weapons against it. These are the things that you guys are already doing. But if you can do that more, if you can do that in that context, and that context, if you can do that here in the aphasia center, and at home and in the shop, then actually aphasia is going to start to think, ‘Okay, I don't really have much of a place here. I'm not so welcome here.'” And it's going to get less powerful. And we can draw attention to that. We can thread it together. So it's not, “Okay, you know, John's aphasic. And he can't really communicate with anyone.” It's “Aphasia tries to get in the way of John and his family and John and his friends. But this is a really skilled group of people on guard for that. And they are equipped with so many skills and tools, working as a team to make sure that aphasia does not disrupt their relationships.” And that's enormously empowering for people.   Lyssa Rome    Yeah, it's a big shift. What you're describing makes me think about how people in relationship are dealing with aphasia, and how the reciprocity of communication, and that back and forth, might promote resilience with aphasia. And I'm wondering how we as SLPs can help people foster that resilience.   Kate Meredith   So resilience is such an interesting concept when we think about it in any walk of life. And there's so much different research into it. And I was looking into this a lot when I did my family therapy training, my dissertation was really around kind of partner coping when their partner has a communication disorder. So what helps people to cope and what helps people in relationships to feel resilient? And the reading I was doing at the time showed me that interpersonal relationships really influence resilience.    There was a paper by Roland, which was saying that actually, couples who can communicate openly, directly, and sensitively can better cope with chronic disorders. So what does this mean for groups of people that we work with in speech and language therapy and pathology, where open, direct, sensitive, reciprocal communication is less possible? And this is really where SLPs come in with their skill set. Because we need to understand, I believe, how people are managing. I think we need to start having those conversations—what's going on with renegotiation around the boundaries in this family around where the illness has its impact, about how they find a balance in their relationships that suddenly might be really skewed from where it was beforehand. In family therapy, we're really curious about people's understanding of each other's needs, of their strengths, and of their different perspectives on it.    So I guess when we're thinking about open and reciprocal communication, we can have ideas about supported communication. But we can also have a think about actually, what is it like to, to slow it down and to really be thinking, what are our different perspectives on this issue? How do we have a session that is supported by an SLP—somebody that's just taking it slowly and saying, “What is this like for both of you? How do you feel you're managing with this? What are your different ideas about this?” We can be there, supporting the person with the aphasia, to share their perspective, to share their worries. And it's the quality of that that can really, really lead to people feeling that we are open with each other.    It's not about the ease of the quick communication, necessarily, of: “What we're going to have for dinner tonight? And can you phone so-and-so?” It's about: “How we both feeling about this? How are we going to support each other? There's this idea about, you know, me helping you with personal care. What does that feel like for you? Does that feel okay for you? Would you rather someone else did it, so we protect our relationship in a different way? How can I understand your perspective? And how can you understand my perspective?” For me, that's the quality of that communication, that we can really have a part in making more sensitive, making more open, which I think can directly feed into people's resilience.    There are other ways that we can think about resilience, which is about the protective factors that they have as part of them or in their environment or in their relationship. And we can do a little bit of work around that—”What is it that that you do to help you manage at this time?” So then might be emotion-oriented coping mechanisms. Some of those can be healthy, some of those can be unhealthy. So we might be thinking about faith, we might be thinking about denial. There's problem-oriented coping mechanisms, where people might think about giving up work to help manage the kind of care package of their partner. But obviously, that can have its implications with social isolation and financial resources. There's problem-solving coping mechanisms where people might seek social support, or take on different roles that were previously held by the person with a brain injury.    But we need to, I think, be curious about this. What are you doing that's helping you through this time? What ideas do you have about the future and how you guys are going to manage? Because we know that sometimes people can do things with the best intentions. So partners have been found in the past to isolate themselves from social networks to avoid placing their partner into difficult or embarrassing situations. And we might be curious about that and thinking: Okay, yeah, we can see what the intentions are there. And that sounds like you're really holding them in mind. What will that do to you and your resilience, if actually, your social network kind of closes down?    So there aren't necessarily the right answers. And that's another kind of value, I guess, in family and systemic psychotherapy. We're not necessarily there to give the answers. We're there to ask the questions. We're there to be curious. Because generally, our belief is that people come up with their best solutions that fit them, that fit their context. But what we might do is ask the questions that help them to feel: Here's somebody interested in this, here's somebody that can help me to work this through with my partner, by being there, supporting the communication. And that can be a really valuable extension of our role that people might find more meaningful than maybe other things that we do.   Lyssa Rome   So it sounds like you're describing resilience as also something that's sort of based in and fostered by relationships. One of the ideas that really stood out to me in the presentation you did at ASHA was about how speech therapists could use diagrams and maps of relationships and systems to help them understand the context that aphasia exists in, right, the people who are dealing with aphasia, and so I'm wondering if you could tell us a little bit more about using diagramming within our practice?   Kate Meredith  Absolutely, I think this is one of those quick wins that SLPs can kind of start to implement kind of really, really quickly if they're so inclined. So genograms and ecomaps are two tools that I started using really, really quickly when I was training as a family therapist, but still working as a speech and language therapist. And they're slightly different. But essentially what they do is kind of map out the context for communication, map out the context for relationships.    So genograms we tend to think of—they're better known as family trees. So you might have seen these in other books and other contexts. But essentially, we use normally circles for women and squares for men and different shapes for people that don't identify as either. And we kind of map it out according to at least three generations. So you have symbols for each member of the family, and lines to connect them in their different family groups and generations. And what we do there is we map out the structure of the family. So we understand who's in the family and, and where do they live and how often do you see them. But also we can start to think about the quality of relationships. So in systemic psychotherapy, we draw lines between relationships. So you might have two or three lines between the people that are really, really close. And then you might have some squiggly lines between the relationships where there's conflict.    So it helps us to understand, okay, where are where are the people that we're working with in the context of their family relationships? Which relationships are going well? We can also put significant dates on there, separations, illness is really useful to put on there—physical illness, mental illness. How well is this family doing at the moment? What is this new injury, or this kind of developing illness mean to this family? And if we're thinking about their conversation partner as being kind of their key support, potentially their partner, actually what else is going on in their family, because most of us have got something going on in our family. I think I fell into the trap very often as a speech language therapist, thinking: Oh, I bet this wife will be delighted when I say, “By the way, I can stay late tonight, if you want to come in, and we'll do a conversation session with you and your husband.” Without thinking: I wonder what else this woman has on in her life and how this will fit for her?   So it helps us to understand a little bit more about what's going on for that family at this point in time and how this fits. It also helps us to understand if we ask questions, things about the family scripts, the things that get handed down the generations. “We are a family who grin and bear it and get on with life and don't grumble.” Or, “We're a family where bad things always happen to us. And this was always going to happen.” What are the stories that we tell about ourselves as a family? This can be really informative for us as therapists to be thinking: Is this to them feeling like another example of that? Or actually, are they ready to challenge that family script? Or do they have a really positive family script? “We're survivors, we find ways to make stuff work.” “No matter what happens, we're going to stick together.” It's really interesting to ask people about the stories that get told about their family and, and what gets handed down in a really positive way. And what gets handed down in a way that doesn't feel okay, and maybe it's time to think about doing something differently.    So those genograms kind of map out the significant relationships within the family, which can be really helpful for us as speech language therapists to think about. Okay, who are the key communication partners here, and what is the meaning of the illness or the meaning of the aphasia for this family? So that's kind of one way of doing it.    There's another way of doing it, which sometimes, I'd almost recommend starting with, because maybe it fits better for a lot of people in the way they live their lives these days, where it's less centered on the family and the different generations, and more about our social networks. And I'm not necessarily talking about online social networks here, I'm talking about wider social networks. So the tool that I'm thinking about here are called ecomaps. And what we do with ecomaps is we draw a bit of a map of the family and their social systems and their professional systems. And we do that by drawing a circle in the middle with the person we're working with, and their immediate family, or household in that circle. And then around them, we draw more circles. And that can be as many as is relevant—a circle for each system that they are engaged with. So it might be the two partners, if it's two partners, each their work context. If there's kids, it might be their school. There might be adult friends. There might be kids' friends. There might be sports teams, book clubs, neighbors, other family groups. We can start to think, okay, all of these people interact with this family on a weekly basis or monthly basis.    And we can put ourselves on there. Now coming into this, there's a rehab team, or a speech language pathologist or a psychologist or social worker. We can start to kind of put ourselves on there as well. And we can have bigger and smaller circles related to kind of how present those systems are in the family's life. I think what can be really interesting is looking at how much space we take up in somebody's life sometimes, particularly in the acute stages or early on in rehab. Actually, work might have shrunk down to a tiny, tiny circle, whereas it used to be something that somebody did 40 hours a week. And actually now we take up 40 hours a week if they're on an inpatient ward, or even more. Things get really skewed. We become really big in people's lives and that might be quite complicated for people.    But what we can do is start use the lines that I talked about earlier in genograms—the straight lines for closeness the squiggly lines for conflict, again, between that that group in the middle and the different systems around them. What's going well here? What is really shrinking down but we don't want it to? We want that to be bigger, that meant something to us, and at the moment, it doesn't have any space because all these other systems are involved. Where is it that actually, we can say, “Okay, right now, yes, having all the support from the speech language pathologist is really great. We want that. But what would it look like in a year's time?”    Doing these over time can be really important. If you had three of them, you might do an ecomap the year before the brain injury. What did family life look like? Who were the connections? Who were the networks? Right now what does it look like? And if we were to think in two years', or three years' or five years' time, what would you like it to look like? Because that helps us to think about: Which are the systems that we really need to support this family to communicate with? And what would that communication goal be? What would be meaningful for that person? So if it's, “I really love my book club, they're a brilliant group of people, I want to stay engaged with them.” Okay. What does that mean for our communication goals together? How can we really make that important and prominent?    So we can really set goals that are based very much on what will help this person to keep their network—that again, like you said before, feeding into those ideas of relational resilience. And meaning that actually, that social isolation, the people can really experience with aphasia, with people adjusting to aphasia and caregiving, we can say, actually, there are ways to keep these networks going if we think really carefully and really intentionally around what communication goals are needed for us to work on, but also how can we explain to these different systems about aphasia and its sneaky ways? And how can we help them to feel just as skilled in outwitting it and outsmarting it, as the family are hopefully beginning to feel?     Lyssa Rome So as we begin to wrap up, I'm wondering what what would you like speech language pathologists who are listening to this to take away from what you've been sharing with us?   Kate Meredith    I imagine that many speech language therapists listening to this will already have a load of these ideas. So I hope that they feel empowered to keep thinking this way, keep using these ideas. I, for my own practice, like to think: Okay, what would matter the most to me? If I was to have a stroke, if I was to have aphasia, what would matter the most to me? And I think that can be a helpful way to think.    So my thinking is that actually, communication builds relationships, communication sustains relationships, and my relationships are the most important things to me in the world. But what if no one that I was working with in our health system was talking about the significance of aphasia in my relationships? I'd feel stuck. I'd feel like I didn't have anywhere to express that. So I would love speech language therapists would be thinking, I'm gonna ask, “How's this affecting your relationship? How are you doing with that? Who should we be bringing in? How can we understand that?”    So curiosity underpins everything that family and systemic psychotherapists do. So be curious and be broad with your curiosity. Don't feel like there are limits that you've got to stick to. Feel free to ask, “So what's this doing to your relationship with your partner? How's that working for you? What are you worried about?” Because actually, when we can help people to say it, it feels more manageable. So I'd love people to think about that.    I'd really encourage people to think about the concept of timeframes. So what were things like before? How are things now? Where are we going to? What to what place do they want to get to? Because actually, if we don't ask what things were like beforehand, we might never know that actually, they were just about to divorce. And then this happened, and now they feel stuck together. So, you know, ask, “How was your relationship before the stroke?” A lot of people will be doing this already. I don't want to patronize anyone. But I do want people to feel permitted—not that I'm here to give permission—but encouragement to ask these questions. So can we find out who the key conversation partners are, because that really makes us think about the key communication goals more broadly than our immediate context that we see them in.    I'd also really like to think about change happening in relationships rather than change happening within the individual. So a great shooter I had recently said, you know, when people are traumatized, don't make them responsible, alone, for change. This is Robert Van Hennik. And I love this idea: Is it fair for us, in healthcare, in society, to say, “You, there, with aphasia, you need to change your communication so other people find it easier to to understand you.” How can we help families and societies and communities to understand the relational responsibility for aphasia and for managing aphasia?    I also would really like people to have a think about the problem. So the way we talk about the problem gives the problem meaning. So what are the stories that we hear and we tell? And how can we help people with aphasia and their families and their networks to challenge the dominant stories that actually might not fit for them. Actually, there's a really lovely possibility there for joint working. There's short training courses. And there's already a lot of kind of writing out there in systemic theory and practice and more writing coming through about the links with aphasia.    Finally, I guess what I would say is a speech language pathologists, people listening to this, they're already uniquely skilled. And I don't think people understand how good they are at noticing and supporting communication. And that's what builds relationships. We're so proactive in reducing communication barriers, and we've got the opportunity, through our work with people, to really, really find out what matters to people, and help people, help relatives learn new ways of communicating. So don't underestimate everything that you have to offer, in expanding that to relationships, and the quality of relationships to do work that is more and more meaningful for the people that we work with.   Lyssa Rome    Kate Meredith, thank you so much for talking with us. These ideas, I think are both very practical, and then also very empowering to think that as SLPs we can really think broadly and with curiosity about how we are supporting people and families as they deal with aphasia. So, thank you so much for talking with us today.   Kate Meredith    It's been a real pleasure. I'm delighted to have been able to have this conversation with you.   Lyssa Rome    And thanks also to our listeners. For the references and resources that were mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. There you can also become a member of our organization, browse our growing library of materials, and find out more about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access. For Aphasia Access Conversations, I'm Lyssa Rome.       References and Resources  www.merediththerapies.com kate.meredith@outlook.com Headway https://www.headway.org.uk Stroke Association https://www.stroke.org.uk   Aphasia Access Conversations Episode #97: Aphasia Is A Family Thing with Marie-Christine Hallé    

Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Katie Strong and I'm a member of the Aphasia Access Podcast Working Group. I'm also a faculty member at Central Michigan University where I lead the Strong Story Lab. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Dr. Sabine Corsten. We'll be talking about her work which focuses on supporting people with aphasia in reconstructing their narrative identity. Before we get into the conversation, let me first tell you a bit about our guest.   Dr. Corsten, Professor of Therapy and Rehabilitation Sciences (Speech Therapy), employed at the Catholic University of Applied Sciences, Mainz, Germany, has focused her research on participatory and quality of life-oriented interventions for aphasia and in old age.  Her research explores how identity changes after having aphasia. She has led the development of the biographical narrative approach 'narraktiv' in Germany. She is currently involved in the development of digital solutions to support peer biography work and social networking in aphasia and in old age. The app, BaSeTaLK, to support biography work in senior citizen facilities to improve quality of life and communication was awarded the Digital Health Award by Novartis. She has presented her work at international conferences and has published internationally. Dr. Corsten has been a visiting researcher at the Centre of Research Excellence in Aphasia Recovery and Rehabilitation at La Trobe University in Melbourne and at the University of Queensland in Brisbane.   In this episode you will: Learn about how identity and narrative are connected to quality of life. Hear about the development of the Biographic Narrative Approach. Learn about how an app, BaSeTaLK, was used for older adults in nursing home populations to improve their quality of life. Hear about how parking lot conversation in Philadelphia led to an international working group on narrative identity and that that group's vision is to train students and clinicians in gaining competence in narrative identity work.   Katie Strong: Welcome. I can't tell you how excited I am to have this conversation with you today.   Sabine Corsten: Yes, thank you for the invitation. I feel really honored to be invited. So yeah, I'm really excited too and I'm looking forward to our discussion today.   Katie Strong: Fantastic. As we get started, could you tell our listeners exactly what is meant by ‘narrative identity'? And why this is so important for our work with people who have chronic communication disabilities such as aphasia?   Sabine Corsten: Thank you for this first question because I really think it's important to have a clear concept of identity and narrative identity to understand the biographic narrative approach and similar approaches like your approach about storytelling. And also, I think narrative identity is kind of a key objective in improving quality of life, so it's really necessary to understand it. When we started our work, we looked at sociocultural theories and we found that identity is constantly transformed through, for example, social interaction with other people. So, this means identity is renegotiated in dialogue with others. Therefore, you need narrative competencies, which means the competencies to talk about oneself and intersubjective exchange. So, I think these social interactions are necessary to interpret and integrate important life events in your life story.   Important life events can be very positive things like a wedding, but also negative things like having a serious illness. And so, these processes to interpret and integrate these life events are crucial for optimal identity development and for psychological well-being. This means these kinds of life stories or life narratives facilitate the process of understanding what happens to you and your life, and they help you to make sense of these crucial or critical life events like a stroke, for example. By this, the sense of identity can be restored, or you can find a renewed meaning to life. And now, you can have this bridge to quality of life, because quality of life seems to depend on meaningfulness and optimal identity development gives this meaningfulness to your life. So, this is very closely connected.   Maybe to sum it up, identity development or identity work can be seen as an ongoing process that forms a connection between the past, the present, and the future, and also between different roles you have in life as somebody in a professional role or in a family role. It also connects different life areas. And this narrative character of identity means the medium to do this narration is telling about yourself so that you can connect these different times in your life and areas. And also, I think this is really important, it gives you a feeling of coherence so that you recognize yourself as the same person over time, despite changes in your life and your roles. So, you have the impression of continuity and the feeling of agency that you are able to make decisions and to act.   That was a long explanation about identity. Now looking at aphasia as a chronic communication disability and as a really critical life event, especially asked for this identity work. However, the really necessary competencies, the narrative competencies are limited. So, the intensity and the length of the conversations are limited. And you can say, yeah, aphasia is a biographical disruption, so it disrupts everyday life routines, disrupts aims and perspectives. But it also disrupts the possibility to cope. So, because of the language difficulties, and I mean, you know her better, but I think it's so impressive how Barbara Shadden equated aphasia to ‘identity theft', because people can't use language for these necessary coping processes. And so, people with aphasia often describe themselves as more deficit oriented. You can see, for example, about 60% of people with aphasia suffer from signs of depression one year after having a stroke. We also know that improvement in language skills does not mean there is the same improvement in quality of life. This was the starting point for our work.   Katie Strong: Thanks Sabine. Yeah, so it really is important. The stories that we tell others and the stories that we tell ourselves about ourselves have a significant impact on our quality of life. Well, I'm just so curious if you could share about how you became interested in this work?   Sabine Corsten: That's a very good question. I mean, you know a bit about it, and it was really an exciting journey because of when I started working with people with aphasia. When I started my professional career, my work was really about classical language-based therapy, so it was symptom-oriented, and we were looking at functional themes. For example, my Ph.D. was about phonological therapy and aphasia. And that was really changed when I started working in Mainz as a professor. So, we had this discussion at home about how language is connected with thinking. So, the connection between language and thinking and people with language difficulties. How can they work on their self-image because this essential to language is missing or limited?   From a sociological point of view, the question came up, “what does this mean for the experience of oneself?” And to be honest, I had no answer. And I was expected to be the expert, so I thought, “I have to look this up,” because this is a really new path. And thinking, “what does it really mean to have this language difficulties apart from word finding difficulties and symptoms I knew about?”   I was not sure if there was something in the literature, but then I found the articles from Barbara Shadden and I had to look up this work. But I know now that this was the initial spark for me, because then I really thought, okay, there's already somebody who wants to understand what it means for people with aphasia to work on their identity and what it means for their further life and coping processes. And, so yeah, this was the starting point. And my work was always about conceptualizing intervention, so I thought, “okay, I want to understand how identity processes can take place when you have suffered from aphasia.” But I also want to support the process because it seems that there is a deficit. So, I already had in my mind that I wanted to think about a kind of therapy method or approach.   Katie Strong: I think that's where our commonalities lie. You know, I've been a fan of your work since I was a doctoral student working on my dissertation, which was also in narrative methods to support people with aphasia. I would love for our listeners to hear a little bit about the behind the scenes of how you developed the biographic narrative approach and the philosophy behind it.   Sabine Corsten: When I found the work of Barbara Shadden, I thought, “okay, there is a starting point for our work.” So, this was when I learned more about the idea of narrative identity and about the idea of, “okay, we want to support people with aphasia to work on their narrative identity.” And in the beginning, it seemed a bit crazy because we wanted to use the thing that is really difficult for them, language to support identity-building processes. So, maybe it's important to mention that during that time, I also met Linda Worrall and Miranda Rose for the first time. They also supported us and said “no, go on. This seems to be a really good starting point,” and, “maybe a bit more about the philosophy is.”   The philosophy of biographic narrative work is not really that we found something totally new. What we wanted to do is to support this kind of exchange with other people and to support live storytelling, and people with aphasia despite the language difficulties. I think this is one very important thing. And other characteristics of the philosophy that we thought, “okay, it's not about language improvement, it's more about giving them the tools to tell their story.” So, using multimodal support as written language, or using photos of pictograms. So, all the stuff we already know from traditional speech and language therapy, but really using it to have a deep conversation about their life stories. As a third point, people with aphasia can use their life story as a kind of resource pool so that they could discover, for example, strategies that they used in their former life to overcome challenges. And so that they start thinking, “okay, we can use these strategies again,” and really people told us about that. For example, they realized, “I was always very good at math, so I can do my financial stuff again on my own, I don't need help from my carers.”  Another really important point about the narrative approach is that it's really not directive, it's non-directive. So, it's not about, “oh, you're telling me you like to meet other people, then it's a good idea to use or to visit a support group.”  No, it's really about finding the solution by themselves. We just listen and try to understand what people tell us, but it's not about giving them a direction.   Another very important point is that it has, in my opinion, a preventive character. So, it's not a kind of psychotherapy and it's not about working on depression. It's really about preventing depression or working with people with mild symptoms. I think these are really very important characteristics of the approach, and you asked about how we developed it. So, we work in an interdisciplinary team consisting of, of course, speech and language pathologists, but we also had an adult educator on our team to learn more about the theory behind narrative identity. And we also got advice from psychologists and sociologists, really to learn more about these other disciplines. So, this, I think, is what is behind the approach. Maybe, should I also tell you a bit about how it works?    Katie Strong: Please. Yes, please do!   Sabine Corsten: And I forgot, apart from the professional workers who were part of the team, we also asked people with aphasia, for example, about the language we use in the approach. So, to learn more about easy language, or, for example, to select topics that were really important for them and what they want to talk about.   The approach itself consists of individual and group sessions, five individual and seven group sessions, in the evaluated version, and the sessions took place over ten weeks in our study. For the individual sessions, we mainly based them on a kind of unstructured interview format, it's called the ‘narraktiv' interview or the narrative interview. So, this should really give people with aphasia the chance to tell about their life story. For example, we started these sessions by asking them, “tell us about your life, you can tell anything you want. We won't interrupt you, and you can just talk about what you really think is important to you.” So, they were not forced, for example, to tell their stroke story. And there were also people who started with very different things, for example, with the death of their mother or things like that.   The first three sessions were about this unstructured interview form, and then we had two more individual sessions which were a bit more guided about relevant biographic narrative, relevant topics, for example, family, or health, their professional career perspectives for the future, things like that. And we also used these last two individual sessions a bit to prepare the people with aphasia for the group sessions.   And during the seven group sessions, we had a speech and language therapist and educator who kind of moderated the conversations. So, they really worked as a kind of communication broker by just supporting the conversation, introducing people to the topic, and asking questions so that everybody was able to take part in the conversation. And we also decided to include people with really severe deficits in speech production, so people with severe apraxia of speech. And again, we offered them to use pictograms and written language. We also had some worksheets, for example, we had something like a card and people could write down, “so, this is me” in the middle, and then they could put people around themselves. So, “these (people) are my family. These (people) are my best friends,” to show how close they are to the individual persons. And after ten weeks, we stopped the intervention, and we had a conversation after three months to listen to the people and to hear how they felt after taking part in the intervention.   Katie Strong: Thank you. So, I do have a question. I guess in the group sessions, were they sharing things that they had prepared in their individual sessions? Is that what was happening?   Sabine Corsten: Yeah, exactly. For example, they had talking about their families as a topic in the individual sessions. And then they brought, for example, pictures from their family to the group session and introduced the members of their family to the other group members. Yeah, they shared the information that they discussed in the individual sessions.   Katie Strong: Fantastic, thanks for clarifying that. Since that initial project, you've been taking this storytelling approach in directions with different stakeholders, and also incorporating technology, specifically with nursing home residents and an app called BaSeTaLK. Could you tell us a little bit more about all of this?   Sabine Corsten: Yeah, I mean, really, the core of all of this is the biographic narrative approach. And we really started using this and other settings and with other target groups. And BaSeTaLK, again, an acronym, it's about using it with another target group. So, we decided to work with really old people, residents living at nursing homes, and the idea was to strengthen resources in the late stage of life. And I think you can compare getting old and especially moving into an institution to having a stroke because it's also a very critical life event.   You can see that people living in nursing homes really experience a kind of loss of connections and meaningful relationships, which means they also have high rates of depression. I think it's really up to twice as high as people living at home, so they are really in danger of getting a really serious psychological illness. And also, the rates for dying are higher there, so we thought it's another situation where people need support in communication to have the chance to talk about themselves. And again, it's our task to find this kind of preventive solution. It's also not new in working with older people, for example, there is already biographic work or reminiscent work. It's kind of quality characteristic of modern nursing and care for elderly people. But we found that it is mostly used for people with dementia, so then the aim is to facilitate the memory, really, it's not about identity work. So, it's really mostly offered for people with dementia.   And another point is, at least in Germany, this kind of reminiscent work is not systematically used in nursing homes because we have this shortage of staff, and this really limits the use. So, we thought that it might be a solution to work with volunteers and older people because we know from the literature that if volunteers and residents are similar, for example, in age, then it's easier for them to collaborate. And so, we thought that we would work with volunteers, and they could go into the nursing homes and have these life storytelling conversations with the residents. And we found in the literature that, for example, in palliative care, this kind of biography work is already done successfully by volunteers.   But it's also recommended to use technical devices, for example, specific apps to support the volunteers. And this was the moment when we thought, “okay, let's do this and try to develop an app like BaSeTaLK so that volunteers can use it as a kind of moderation guide and to stimulate these narrations in nursing homes.” The app, BaSeTaLK itself, is kind of about virtual journeys. Let's say it like that.  So, it offers the opportunity to go on virtual life journeys and you can visit different virtual places. For example, people can choose to talk during one session about a river or theater. So, it's not just a river or mountains or things like that, you can also go to casual places. And we had a long discussion about if we wanted to conceptualize the app around these locations, because in the beginning I thought that it was much better to have these biography important topics like family, health, and all the things I already knew. But we developed the app together in an interactive process with residents and possible volunteers. They told us that many old people don't want to talk about their family, for example, their partners may be dead or their relationship with their children might not be so good. They might also be a bit more open, so people can talk about their family, but they don't have to. And so, we decided, “okay, let's have these places,” for example, we have a place with a garden that has stimulating questions like, “what did you observe growing during your life?” And then people can decide if they want to stay with the plants and talk about plants, or if they think, “oh, I saw my family growing, and I want to talk about my grandchildren,” they can talk about that. So, the questions are quite metaphorical. You can stay close to the question, or you can give a broader answer. So, this was the idea when we chose to work with these locations. And then the app has a kind of stimulating feature by always asking these kinds of questions, but also having pictures of plants when you look at the garden or of nice places in the scenery. So, people can talk about what they associate with the picture and they can answer the questions. There's also always a kind of specific feature at each location. For example, when you visit the sea, there's the sound of the sea, or you can listen to a podcast or you can listen to music, things like that. The app can be used in one-on-one sessions to stimulate conversations about the life story, but it can also be used in group sessions to facilitate group conversation. I'm not sure, I think this gives the first impression of how the app might work.   Katie Strong: Absolutely. No, I think you've given us a great visual of how it can work. I guess one question that I know that's going to come up, Sabine, is “Can anyone access the app?” Or “How do we how do we get access to it?'   Sabine Corsten: Yeah, this question really comes up each time we talk about the app, and I think it's a very good question. And, yeah, I would really like to say yes, everybody can use it, because we really had very positive feedback from the users. So, we evaluated in a bigger study including fourteen residents in the target group, I think, and we also had a control group with more than ten people. And the data really showed that there was an improvement in quality of life and quantitative data. But I think it was more impressive that people told us, “yeah, we really started thinking about our lives.” For example, one older woman taking part in the intervention, I think she was 94 years old, she said, “so this intervention was a turning point in my life. So now I look at my past and much more positive way.” And I mean, she was a really old woman, and she took part in twelve sessions.   In total, we have 15 locations in the app, but we only work for three months with our residents. I think this tells so much about what happens when you take part in such biographic narrative interventions. And I mean, we really work with people with maximum mild cognitive deficits, so it was really for older people with almost no cognitive deficits. Now to your question, after this long answer, we published the app as open-source code, but I had to learn that it doesn't mean that it's an app shop or that you can immediately use it. It means everybody can work with this code, so other coders, IT people, tech people can start changing the code or working with the code, but companies can also do that. We don't have the funding to really go on with the app or to operate it on a regular basis. So, we are looking for bigger institutions, for example, institutions working with a lot of nursing homes in Germany so that they can operate the app. We are also discussing going on with the app with the colleagues from La Trobe with Miranda Rose. So, we already translated all the language stuff from the app so that it can be used, for example, in Australia. And there's the idea that it can also be used when you work with people with aphasia because it really has easy language with hardly any barriers. It's easy to use and the interface is very simple. So, at the moment, we think it might also be a good idea to train people with aphasia to use it as a kind of peer leader in support groups, for example. So, we try to find that kind of money to go on with the app and we also try to transfer to other targets.   Katie Strong: Important work and we certainly hope that the funding comes your way. I love that it can be applied to a variety of populations. You've talked a little bit about the coding but tell us more about what it was like to develop the BaSeTaLK app, and who was part of your team. All of that good stuff.   Sabine Corsten: It was a really new experience for me because it was my first tech project. And we started this tech journey before the pandemic so we didn't know that would become so important for people in the nursing homes. And, as I already mentioned, we started the development or process in a so-called user-centered process. So, this means all the possible users were involved in the whole process, to really old people living in nursing homes, to older people who might work as volunteers. So really from the starting point, we started working with them in focus group meetings. And these focus groups were led by two of our research workers, two speech and language pathologists, and also our tech guy who programmed the app was part of the focus groups. And they met on a regular basis. So, in the beginning, we started looking at recommendations in the literature and requirements. And then we presented this to our focus group members, and they commented on it, or they were also able to use some prototypes we developed. And so, this we presented it to them, and they would give new recommendations to us, or they talked about their requirements.   Katie Strong: I think it's so thoughtful and so important that we bring in stakeholders so early in a product development like this, you know.   Sabine Corsten: Yeah, we really learned about, for example, the selection of the topics. So, they told us not to offer topics like family or health, because this is so difficult for so many old people. So, start with other topics, maybe easier topics, and then you can create variety in the depths of the conversations by using different kinds of questions. So, this really came from the groups, it was not in our minds. I think this was really important to learn a bit more about that and also about the interface. I mean, now I say, “yeah, we work with a simple interface,” but this means really simple. So, because of all the things that we already know about the menu, and all these things are very difficult for people. I mean, we are talking about people 80 years and older. And I think you really have to ask them because otherwise, they can't use the product. What might be interesting is that we had to do this all during the pandemic, so it was difficult for the groups to meet. For example, we ended up clarifying some things, or some topics, by phone calls. So, it was not possible to meet all the people in the group together. This was one of the challenges.   I think it's really interesting, we have a Ph.D. project using interviews with the members of the focus groups after being part of this focus group work and phone calls and all of this stuff. And I think this is interesting because we are all still able to show that this participatory work or process was really a very good experience for the members of the group. So, we found some indications for personal growth and personal empowerment. So, they were talking about how they have found or developed some new competencies. And I think this was also interesting that even the people who were just part of the focus group meetings benefited.   Katie Strong: Yeah, right. It's all about meaningful work, right? Having purpose and doing meaningful things. I love that. Well, I'd like to shift gears a bit and share with our listeners about how we met at the International Aphasia Rehabilitation Conference (IARC) in Philadelphia, in the Hilton parking lot of all places to meet. And we ended up having this beautiful parking lot conversation with you, me, Sarah Northcott, Rhianne Brinkman, and Bianca Spelter. It was kind of the start of this international working group that we have for narrative identity. You've been the leader for this group, and I was just curious if you could share a bit about what we've been up to and a few of the goals of our working group.   Sabine Corsten: I mean, I already told you that I'm really not sure if I am the leader, but I really like being a part of the group or a member of the group. And, yeah, I really wanted to get to know you and also about Barbara Shadden to be honest, because I admired this work. And so, when I came to Philadelphia and saw you on the presenters list, I thought, “okay, I want to get to know her, and I want to get to know, of course, Barbara.” And then, I think it was really nice to get to know all of the other people you mentioned already. And I think it's so great that we have this group, and that we meet on a regular basis, since last summer. So, for me, I think it's really a very specific opportunity to learn more about the storytelling approach, about the theoretical background, and also to meet people who really believe in the same thing. This inspires a lot in me, I think, so that I think, “yeah, we are on the right way because we are together.” So I think, but you can correct me, one of the goals of our group is to have an exchange about our work and about the things that are important to us, looking at our professional work.   Another thing, and I think this is something I like very much, is to develop joint projects to have or to come to results, for example. And I think one really interesting path is to think of how to support storytelling, for example, in the acute or post-acute phase of aphasia. And I think we talked about this in the beginning and then we thought about other projects. And I mean, at the moment, I don't know what you think, but I think it's great that it has already started. So, we are already working on a joint project, and this was about introducing students and speech and language pathologist clinicians to the narrative approach, and especially to the approach you use, the life storytelling approach. And maybe combined a bit with the ‘narraktiv' approach, to work on the training together, to train and inspire other clinicians, and to facilitate them using the approach. And I mean, in the Netherlands, Rhianne Brinkman already started with a few students to do this course. And, yeah, I'm really curious about what she will find. And I think it's about giving the students or the clinicians more information about the theoretical background, but also giving them the opportunity to make their own experiences and to try the approach with people with aphasia.   Katie Strong: Absolutely, it's just been great to connect with all of our newfound colleagues. And I agree with the sharing of ideas and seeing what we can do to maybe move this work forward to be able to have a farther reach. You just talked a little bit about the student training. But I do think one of the things our group has been talking about is, you know, how can we begin to train clinicians in understanding the constructs related to narrative and identity and methods to use with our clients and exploring their own stories to help them move forward? I was wondering if you could tell a little bit about what the working group has been discussing and maybe has in the works.   Sabine Corsten: I already mentioned it a bit. So, it is about how to add to, what training could look like, or what we really want to share with clinicians and students. And to me, I don't know what you think, but there are two parts to it. There's this part about giving the theoretical background and really facilitating people in understanding why it is important to look at identity and how identity is connected to communication. And, again, this is connected to quality of life and to our work. So, because I think the aim of rehabilitation is a growth in participation and quality of life, and the training part is also closely connected to this. So, giving them the tools to do this, to feel comfortable so that they know how to ask questions, or how to react when people start crying, for example. I mean, it's normal to be upset when you talk about, for example, your stroke story. So, if you are sad that you've lost specific skills, this is very normal. I think this is the part, knowing about the background and knowing about the tools or methods you can use. And the second part is about the mindset to really see that this is our work, and we are responsible for it because we know how to facilitate communication and how to open the space for this kind of conversation. And I think this should also be part of this experience that we want to share with clinicians and students. That they can see this as really their responsibility, but also as a big chance for us to have a new kind of working area, in addition, of course, to the classical field and to the language-based therapy.   Katie Strong: Yeah, I agree. I agree. It's beautiful work, but it does take a different mindset to do. Well, Sabine, we're coming to the conclusion of our conversation, and I was just curious if you had any final thoughts you'd like to share with our listeners as we wrap this up?   Sabine Corsten: Whoa, that's a really difficult one, because I think we talked about a lot of important topics, or thoughts during the last hour almost. I think, maybe the take-home message is to first be aware of the psychosocial consequences of aphasia. I mean, I think a lot of people know about it, but really to be aware of all the changes these people suffer from. It's not only about language, it's about all the other life areas we mentioned. And maybe another take-home message I already mentioned is to feel that we as speech and language pathologists can be part of the solution. So that it's really our part to offer approaches and to conceptualize approaches that might help here. Because, when I look, for example, at the Stepped Care program, this is not established in Germany. But for example, in Australia, this means that really everybody suffering from aphasia can be part of a psychosocial approach. And then, depending on the severity of the psychological difficulties, you can decide if you only maybe have a kind of biographic intervention, or if you need problem solving therapies, or if you really need psychotherapy. I think this would be a good thing to start with, as maybe level one interventions like the storytelling approach, or like the biographic narrative approach, that we start establishing these kinds of approaches for people with aphasia. And that speech and language pathologists feel comfortable doing it, but they also have the opportunity to maybe collaborate with psychologists and can say, “okay, and now we have another level or another severity of psychological problems.” And now we need to collaborate, or the psychologist needs to take over. I think that if we can go on that journey, this would be great to find more solutions in collaboration with other disciplines.   Katie Strong: Yes, I agree. I agree that we, you know, have a role in supporting people beyond just their language impairment and that using story is one way to do that. Absolutely. Well, Sabine, I appreciate the conversation today. Thank you so much for being a part of this. And in the show notes, listeners, we'll have some ways for you to contact Sabine and also some links to references to some of the things that we've discussed today. So, thanks so much for being here.   Sabine Corsten: Thank you again for the invitation. It was really an honor for me, and I think the time flew by now. So, it really felt very fast.   Katie Strong: Well, thanks so much.   On behalf of Aphasia Access, we thank you for listening to this episode of Aphasia Access Conversations Podcast. For more information on Aphasia Access, and to check out our growing library of materials, go to www.aphasiaaccess.org. And if you have an idea for a future podcast topic, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.     Contact for Sabine Corsten – email Sabine.Corsten@kh-mz.de   Acknowledgements – A special thank you to Amanda Zalucki from the Strong Story Lab at Central Michigan University for their assistance in the transcription of this episode.     Resources   Corsten S., Konradi, J., Schimpf, E. J., Hardering, F., & Keilmann, A. (2014). Improving quality of life in aphasia: Evidence for the effectiveness of the biographic-narrative approach. Aphasiology, 28(4), 440-452. Corsten, S., & Lauer, N. (2020). Biography work in in long-term residential aged care with tablet support to improve the quality of life and communication – study protocol for app development and evaluation. International Journal of Health Professionals, 7(1), 13-23.  https://doi.org/ten.2478/ijhp-2020-0002 Corsten, S., Schimpf, E. J., Konradi, J., Keilmann, A., & Hardering, F. (2015). The participants' perspective: How biographic-narrative intervention influences identity negotiation and quality of life in aphasia. International Journal of Language and Communication Disorders, 50(6), 788-800. https://doi.org/ten.1111/1460-6984.12173    Lucius-Hoene, G., Holmberg, C., & Meyer, T. (2018). Illness Narratives in Practice: Potentials and Challenges of Using Narratives in Health-related Contexts. Oxford, UK: Oxford University Press. Menn, L., Corsten, S., Laurer, N., & Wallace, S. J. (2020). The Effectiveness of Biographical Approaches in LongTerm Care: A Systematic Review. The Gerontologist, 60(4), e309-e238. https://doi.org/ten.ten93/geront/gnz074 Shadden, B. B. (2005). Aphasia as identify theft: Theory and practice. Aphasiology, 19(3-5), 211-223. https://doi.org/ten.ten80/02687930444000697 Strong, K. A., Lagerwey, M. D., & Shadden, B. B. (2018). More than a story: My life came back to life. American Journal of Speech-Language Pathology, 27, 464-476. https://doi.org/ten.ten44/2017_AJSLP-16-0167  Strong, K. A., & Shadden, B. B. (2020). The power of story in identity renegotiation: Clinical approaches to supporting persons living with aphasia. Perspectives of the ASHA Special Interest Groups, 5, 371-383. https://doi.org/ten.ten44/2019_PERSP-19-00145   Video Resources Aphasia CRE Talk - Improving the Quality of Life in Aphasia, The biographical narrative approach. - Prof Sabine Corsten https://www.youtube.com/watch?v=NGIFZkysDYA     If you liked this episode – more listening… Additional Aphasia Access Conversations Podcast episodes relating to the topic of narrative and identity.   Episode #5 – Insights and "Aha!" Moments About Aphasia Care with Professor Emeriti Barbara Shadden https://aphasiaaccess.libsyn.com/insights-and-aha-moments-about-aphasia-care-with-professor-emeriti-barbara-shadden Episode #55 - The Power of a Story: A Conversation with Katie Strong https://aphasiaaccess.libsyn.com/the-power-of-a-story-a-conversation-with-katie-strong

“Black Americans Talking About Us” with Michael Obel-Omia, Donald Cunnigen, Denise Mendez, and Roy Hamilton   Interviewer info Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic communication impairments. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer. Michael Obel-Omia Michael Obel-Omia is a public speaker, writer, and educator who has aphasia due to a stroke in 2016. In his tireless efforts to improve, he has found poetry allows him to express himself in ways that speech cannot. An avid advocate for people with aphasia, Michael has published essays about experiences in the journal “Blood and Thunder: Musings the Art of Medicine; The Boston Globe; the Providence Journal; and Rhode Island NPR's This I Believe. Michael lives with his family in the beautiful town of Barrington, Rhode Island.   Links: Boston Globe article about Michael Obel-Omia A Black Father Wonders: Is ‘The Talk' Enough? by Michael Obel-Omia (Boston Globe article about disability and race) Finding My Words: Aphasia Poetry by Michael Obel-Omia (book) Ask the Expert with Michael and Carolyn Obel-Omia (National Aphasia Association video)   Roy Hamilton Roy Hamilton, MD, MS, FAAN, FANA is a professor in the departments of Neurology, Psychiatry, and Physical Medicine and Rehabilitation at the University of Pennsylvania, where he is the director of both Penn's Laboratory for Cognition and Neural Stimulation (LCNS) and the Penn Brain Science, Translation, Innovation and Modulation Center (brainSTIM). His research uses noninvasive electrical and magnetic brain stimulation to better understand the neural basis of language and to enhance aphasia recovery. Dr. Hamilton has also been recognized nationally for his work in diversity in neurology and academic medicine. He served as the inaugural Assistant Dean for Cultural Affairs and Diversity at the Perelman School of Medicine and is the inaugural Vice Chair for Diversity and Inclusion in Penn's Department of Neurology.   Links brainSTIM Laboratory for Cognition and Neural Stimulation Instagram Twitter: PennbrainSTIM   Donald Cunnigen Dr. Donald (Doc) Cunnigen is Professor emeritus of Sociology at the University Rhode Island, where he was the first Black full professor of sociology with tenure since the founding of the university in 1892. He was a member of the steering committee that started the Black Americans with Aphasia Conversation group and continues to be an active member of the group.   Doc Cunnigen videos 2011 Harlem Book Fair panel on the Obama Administration Hands in Harmony: Aphasia Clefs Denise Mendez Dr. Denise Mendez is an educator who worked for 29 years as a teacher, administrator, and curriculum coordinator. In 2017, she suffered the first of four hemorrhagic brain bleeds (from an AVM) and was never able to return to her job. Her life-long passion for teaching and advocacy is still there. Aphasia just changed who she serves. She has a website, More Than Aphasia.com and a podcast called Still Something To Say. Denise is one of the leaders of the Mid Atlantic Aphasia Conference, and a facilitator of the Penn State Alumni Aphasia Group. She also participates in multiple aphasia groups, including San Francisco State's Black conversation group NAA's Black Americans with Aphasia Conversation Group. Denise's motto is “I have aphasia, but aphasia does not have me!”   Links: https://morethanaphasia.com/ Twitter: MoreThanAphasia Podcast: Still Something 2 Say Podcast on Spotify     Additional Notes: Aphasia Access Aphasia Conversations Episode 102: Researching Health Disparities in Minority Stroke Survivors with Dr. Davetrina Seles Gadson     EDITED TRANSCRIPT Lyssa Rome  Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California, and I see clients with aphasia and other neurogenic communication impairments in my LPAA-focused private practice. I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration and ideas that support their aphasia care through a variety of educational materials and resources.   June is Aphasia Awareness Month, and I'm excited to be today's host for an episode that will feature the National Aphasia Association's Black Americans with Aphasia Conversation Group. I'll be talking first with Michael Obel-Omia, a co-founder and co-host of the group. Michael is a public speaker, writer, and educator who has aphasia due to a stroke in 2016. In his tireless efforts to improve he has found poetry allows him to express himself in ways that speech cannot. An avid advocate for people with aphasia, Michael has published essays about experiences in the journal Blood and Thunder: Musings on The Art of Medicine, the Boston Globe, the Providence Journal, and Rhode Island NPR's This I Believe. Michael lives with his family in the beautiful town of Barrington, Rhode Island. Michael, welcome to Aphasia Access Conversations Podcast, I'm really glad to be talking with you today.   Michael Obel-Omia    Thank you so much. I'm blessed to be on this opportunity. Thank you so much.   Lyssa Rome  I wanted to start by asking you why you wanted to start an aphasia group for Black Americans.   Michael Obel-Omia  Thank you, Lyssa. I had a stroke on 21 May, 2016. And I worked very hard to be able to talk first. But no one had talked about being a Black person, about the ideas we had. So I talked to Darlene Williamson. And I said, this is great. I know so many wonderful people. Aphasia Resource Center is so plentiful, so wonderful. I've been creative writing, I've done Toastmasters, everything like that. But I still haven't spoken to Black Americans.   There are 2 million people who have aphasia. And probably about 10% of the population is a Black person. So I said to Darlene—I said, “Is it possible I could talk to people about being Black with aphasia, to talk about what's going on?” And she was very excited. She called Roy Hamilton. I spoke with him, from the University of Pennsylvania. I talked to him for a while. And it started, we started doing it. I started thinking about what we could do. We called a few people together, emailed. All of a sudden, I think in January 2022, we had people on the Black Americans with Aphasia Conversation Group, four or five people at first. But now, we have meetings twice a month in April, in May, etc. with 19 participants. It's a wonderful thing now. It's really great.   Lyssa Rome Wow. So it's grown from this, this need that you felt, and that you saw, to have a space for Black Americans with aphasia, to… it sounds like a really thriving group.   Michael Obel-Omia Yes. Yes, that's true. And again, please remember, there are dozens or hundreds of people with aphasia, and it's wonderful. It really is great—to hear from different people is wonderful. But this is a chance for a few Black people to talk about being Black.   Lyssa Rome When the group came together for the first time, what did you think? Or what was your reaction when you were among other Black people with aphasia? What did that feel like for you?   Michael Obel-Omia Well, of course, I'm an educator—28 years teaching English and everything and preparing for education, everything, English. So I was very nervous. The first time I said, “What am I gonna do?” I sat down and wrote out the outline of what I was going to do. I had to have all the ideas. I went on the internet for ideas—what's happening here, what's happening there. I'm very nervous about things. I'm nervous about everything now, with the stroke, with everything, I'm nervous. But I was already prepared with an outline. I had it written down, ready to go. And I was ready to do that.   We started talking about, “Well, what are you doing? What's going on? How's it happening? What do you do that's so much fun?” So we started talking about things and talking about ourselves. And just chatting about things. I had my outlines so precise, written down, for conversations—being an English teacher. But now I just go in and I go in, I'm smiling and laughing about “What's going on. How are you doing? How is it, having aphasia? How is it, talking about what's happening? What's getting in the way?” And that is one hour. That's what it is: Black Americans talking about us.   Lyssa Rome  Sounds like a really meaningful experience. And when we first spoke about doing this podcast, you described the feeling of relief that you felt, being in a room with other people who shared this experience with you.   Michael Obel-Omia Yes, I have great relief. I have a great feeling. I'm so relaxed, is what I am. When I'm talking to someone right now about podcasts, obviously, my senses are tense right now. My shoulders are high. I'm nervous. I'm worried about what I should say. But when I call the Black Aphasia Conversation Group, my shoulders drop down. There's great relief. Great relaxing, I'm smiling. I'm laughing. It's a lot of fun just to see what's going on.   There are serious issues too. One time, a woman wrote about fear and anxiety. What was going to happen, what I'm worried about, I think being anxious, having a stroke on 21 May, 2016. I'm really anxious about things now. Really, anxiety. I'm very worried things will happen. It's very silly. I mean, when I think about it, it's very silly, but I'm anxious about things.   So a woman asked us, “What about aphasia? What about anxiety?” And we talked about that. Dr. Gadson—Dr. Davetrina Gadson— talked about fear or flight. And of course, for me, Fate—Native Son by Richard Wright. Fear, flight, fate. So we talked about that very seriously, about what it is to be so anxious about things. So there are things that are fun and laughing and great relief and comfort, but fear and flight and fate. Yeah, that's there too.   Lyssa Rome  So it sounds like you are able to talk about a wide range of experiences that you have—both the joyful experiences, and then also the harder experiences and the anxiety and the other emotions that can go along with aphasia. You mentioned Dr. Davetrina Seles Gadson, who was recently on our podcast. The episode with her will be linked in our show notes. I'm wondering if you could describe how the group works a little bit more. What's Dr. Seles Gadson's role? What's your role? You mentioned that you meet twice a month? Tell us a little bit more about the nuts and bolts of it.   Michael Obel-Omia  And so we're all on here on the Zoom 12 of us, 14, 19 participants, and we can talk about it. What makes us tick? What's happening? So everyone can talk about something. Everything—we can talk about it. We talked for about an hour—what's happening, what's going on. And it's wonderful.   Twice, or three or four times, we've had Black Jeopardy, which is Jeopardy with Black people. And she asks great questions. It's a lot of fun to hear. And we can laugh about that as well. It's great. And it's a lot of fun to ask great questions. It's just fun to talk about that. And people feel really good about ourselves.   But we stop for a few seconds to talk about: “How can I get prescriptions? How can I find about someone [to answer] questions or ideas or opportunities or issues? I mean, how do I get somebody? How do I find somebody in Philadelphia? How to find somebody near Maryland about this question? How do I find this out? How do I find speech therapy? How do I find that?” And sometimes it's pretty frustrating. It's like, “Well, I don't know how to do this anymore. I used to meet with a speech therapist, and now they say, ‘No—no more anymore.' What can I do?” And so we talked about that.   Lyssa Rome  Yeah, yeah. So many frustrations and obstacles that aphasia can cause for people and I think it sounds like what you're describing is people with Aphasia in the group helping one another to find some solutions. Is that one of the functions of the group?   Michael Obel-Omia    Yes, I have the idea. I have aphasia. I have ideas of what I'm supposed to say, but sometimes I can hear people say something. And—excuse me, I try to be humble—I'm a pretty smart guy for years with aphasia. I was a teacher at Roxbury Latin, at William Penn Charter, University School. I was the head of school at Paul Cuffee School. I'm pretty smart. I can do that. Now, I got aphasia in 2016. I have the idea now, but I can't do it just right.   About a month ago with the Boston Globe—I just did an article in the Boston Globe about a time I was in North Carolina with Aphasia Access that day. Aphasia Access was wonderful with Stroke Across America. It was a wonderful, wonderful, wonderful night—Thursday, Friday, Saturday, Sunday. It was great.   I was at the airport in Durham, to get on at North Carolina at Charlotte. And I was anxious because I couldn't do something that the security officer asked of me and I froze. I was frightened. And I was very lucky—a very kind, very young Black man reached out to me, and said, “Come on, follow me. Come on.” And I followed him. And very simple, all of about 25 seconds. But I was very afraid. I was very worried about what I was supposed to do. What am I supposed to do right now? What do you want me to do right now? I was froze. But I walked easily—walked through very easily, very comfortably, very quietly. But yeah, I have aphasia. It's really hard. I can't imagine—I just can't imagine how hard life is sometimes.   Lyssa Rome  Yeah, yeah. And I mean, I think what you're describing are some of those moments where aphasia can really get in the way. And I can imagine that as a Black man in America, feeling frozen when someone has asked someone, say like a TSA agent in the airport, is asking you to do something, and you're not sure what they're asking you, there's an extra layer, or many extra layers, of experience, of history, of fear that goes along with that, that I'm not sure—as much as, say a white person who has aphasia can understand the experience of not knowing exactly how to respond to someone, not fully understanding what they're saying. I'm not sure that they can understand that, or it might be harder for them to understand that second level of your experience as a Black man with aphasia.   Michael Obel-Omia Yeah, being a Black man. It is very hard. I don't think on a podcast you can see my face, but I write things the way I look at things. I can look very serious and very angry. But you know, my face is angry and frustrated, and I have to deal with that sometimes. And I can't do anything about it. Sometimes, I look very angry, but it is what it is. And I understand that sometimes I can be looked at this way. It's one of the chances of life.   Lyssa Rome  Michael, you told us about the origins of the National aphasia Association's Black Americans with Aphasia Conversation Group, and talked a little bit about how that group works. I know that there are some other similar groups out there. And one of them is San Francisco State's Gray Matter Lab, which also has a Black Conversation Group. There are some Spanish-language aphasia groups as well. I'm wondering, what should people know about identity-based aphasia groups? What advice would you have for people who want to start a group like yours?   Michael Obel-Omia Every single lives have aphasia, 24 hours, seven days a week. Always aphasia. Always. When this ends, I have to go back to my house, or my apartment, my home, wherever, and I have to think about aphasia. I'm always thinking about having aphasia. So it's wonderful to think about aphasia for one hour, twice a month, I can relax. I can say what I feel about things. I can laugh. I can stumble and fall over words. And it's okay. That's all right. It's fine. It's wonderful. And that's what this opportunity does every time. We can talk among ourselves, with other Black people, smile, laugh, be comfortable, relax. We can be worried about things sometimes. We can be anxious about fear and anxiety. Mostly we can laugh, what we're doing. And it feels right. It feels good for one hour, once every twice a month. So yeah.   Lyssa Rome So I also had the chance to speak with some other members of the National Aphasia Association's Black Americans with Aphasia Conversation Group. And here's what they had to say about it.   [music]   My next guest is Dr. Roy Hamilton, professor in the departments of neurology, psychiatry and physical medicine and rehabilitation at the University of Pennsylvania, where he's the director of both Penn's Laboratory for Cognition and Neural Stimulation, and the Penn Brain Science, Translation, Innovation and Modulation Center. Dr. Hamilton also serves on the board of the National Aphasia Association. Dr. Hamilton, welcome to Aphasia Access Conversations.   Roy Hamilton  Thank you. It's such a pleasure to be here.   Lyssa Rome   So tell me a little bit about why you think it's important for Black people for people of color, maybe more generally, with aphasia to have a space to meet with other people who identify in the same way.   Roy Hamilton    Well, first, I want to take a step back and talk about aphasia as it occurs in individuals who identify as Black or African American, you have to understand that aphasia has a couple of principal causes. For many individuals, it's on the basis of having had a stroke. For others, their aphasia arises from having a neurodegenerative condition, something called primary progressive aphasia. But for both of those causes, whether it be neurodegenerative conditions like underlying Alzheimer's pathology, or whether it's vascular disease like stroke, it turns out that individuals who are African American are at substantively higher risk than the rest of the population. And because aphasia is the most common cognitive manifestation of stroke, if we understand that conditions like stroke are much more prevalent in this population, we're also talking about a population that is substantively more burdened by aphasia or challenged by aphasia. So just on the basis of what causes the condition, we understand that we're talking about a population that is at greater risk.   Now, having said that, in addition to the incidence and the prevalence of the condition itself, there are also many, many barriers that prevent individuals who are Black in this country from obtaining all manner of care, and amongst that care, ways to address, or ways to help with their aphasia. And so, targeted efforts are especially important when you're trying to overcome these kinds of barriers.   And then thirdly, in instances where individuals are able to access care, it's often the case that they're treated differently. They receive a different level or a different kind of care than the rest of the population. So that's another reason why it is important to be focused and intentional and to think about creating venues, creating spaces, where we can focus on the needs of individuals who are Black, who are living with aphasia.   Lyssa Rome   So then, tell me about what you think this group is doing for the people who are part of it?   Roy Hamilton   Well, I think one thing that's important about the group is that it provides a sense of community, a level of comfort. I think that that comes through in the kinds of things that are discussed, the kinds of conversations that are had. They often range towards topics that are culturally relevant, that feel comfortable to the group. And here again, I want to draw a distinction or perhaps point to another aspect of having a focused, intentional group that makes it valuable. Groups of individuals who are brought together to have conversations have an easier time having conversations when they are comfortable with each other, when they're comfortable with the setting, and when you're talking about topics that seem relevant to them. So I think bringing all those elements to a conversation group is a particular value. And I think it's a particular value to this group.   Lyssa Rome    You mentioned earlier about the incidence and prevalence of aphasia for Black people in this country. So is there anything else that you want to add that you think is important to have in here, from your perspective?   Roy Hamilton When we're talking about aphasia, and how it affects Black communities, I think the thing that I would emphasize is that this is not an issue that should only be of interest to individuals and communities who are Black, or persons who care for and work with persons with aphasia, who are themselves marginalized, or minoritized individuals. Health equity, and equity around aphasia is everyone's responsibility. And so I think it is perhaps as important, if not more important, that everyone be aware of disparities as they exist in aphasia, for individuals who are Black and other populations as well. And so I'm really glad that we are having this opportunity to have this conversation.   Lyssa Rome  Thank you. I think that that's an important note to end on. And I appreciate it. Thanks so much for taking the time to talk with me today, Dr. Hamilton.   Roy Hamilton Really, it's my pleasure. Thank you.   [music]   Lyssa Rome  My next guest is Dr. Donald Cunnigen, Professor Emeritus of Sociology at the University of Rhode Island, where he was the first Black full professor of sociology with tenure since the founding of the university in 1892. He was a member of the steering committee that started the Black Americans with Aphasia Conversation Group and continues to be an active member of the group. Doc, welcome to the show.   Doc Cunnigen  Thank you. What has it meant to me? It has been an important place where I can feel comfortable in sharing my experiences as a person who, well, basically suffers from dysarthria.   Once I was in another group, and I mentioned our group. And one of the members turned around and asked, “Why do you need an all-Black group?” And I had to say, “The fact that you asked that question is an indication of why we need the group!”   People feel comfortable in groups where they can express themselves the way they are, and not feel somewhat intimidated if they don't speak proper English or people are making fun of their dialect. You may not feel free to say things the way you feel like saying them. So we explore issues on a regular basis that deal with our daily lives. And a lot of people don't fully appreciate that we have a different journey through life as people of color. And we all have different racialized experiences.   There are some commonalities. But the one commonality is that we are Black in America, and that is a special thing in and of itself. And since we have aphasia, it somewhat colors all of our experiences, like negotiating the racism that one might find in institutionalized medicine. Sometimes it's subtle and other times it's blatant. But we often encounter it. And this group helps you to deal with it.   Lyssa Rome Yeah, yeah. It sounds like you're describing a space in which you can both be yourself and then also connect with others who have an experience that people who aren't Black—people with Aphasia who don't have that experience of being Black in America—just might have a very hard time understanding. And so to have that space seems like a very important thing.   Doc Cunnigen    Well it helps us to get through the day, but it also helps not only with those institutional things I referenced, but little experiential things that we have, that people with aphasia, dysarthria, or TBI only know. That we have to deal with. People bring up, “Oh I have this problem, or I have that problem.” And we can share those types of things. So this is a very comforting place, where people share with each other the good times and the bad times.   Lyssa Rome What advice would you have for people who are interested in starting identity-based aphasia groups?   Doc Cunnigen   Well, it helps to have someone who is sensitive to one's cultural or linguistic abilities. That awareness is helpful. It will also help if there is someone who is culturally or linguistically identified with the group, but it's not necessary, if you have the sensitivity. I think it is important not only for one to be sensitive, but to become a bit knowledgeable. Reciprocity, being able to exchange with the stroke survivor, is critical. Listen. Listening is very difficult for anybody, whether they have aphasia or not. Now that I have difficulty with my speech, I appreciate the ability to listen and have patience. Lyssa Rome Doc Cunnigen, thank you so much for sharing your thoughts about the group. I really appreciate it.   Doc Cunnigen  Thank you for having such a nice program.   [music]   Lyssa Rome    My next guest is Dr. Denise Mendez. Denise is an educator who worked for 29 years as a teacher, administrator, and curriculum coordinator. She has a website: morethanaphasia.com, and a podcast called Still Something to Say. Denise is one of the leaders of the Mid Atlantic Aphasia Conference and the facilitator of the Penn State Alumni Aphasia Group. She also participates in multiple aphasia groups, including San Francisco State's Black Conversation Group, and the NAA's Black Americans with Aphasia Conversation Group. Denise, welcome to the podcast.   Denise Mendez    Thank you so much, Lyssa.   Lyssa Rome   Denise, what has the NAA's Black Americans with Aphasia group meant to you?   Denise Mendez    Well, you know what? The conversation group, it's sort of like—this sounds corny—but it's family, you know. It's a comfortable, safe place for us to check with one another, “How are you? How's everything going?” It's very familial. I don't know, it sounds weird. But like I call some of the folks there, different ones, I'll say like, “Oh, that's my cousin.” You know what I mean? Like, you've got all these cousins down this family line, but aphasia is what made us connected.   So we encourage one another, we teach each other, we just share information from other people. The beautiful thing is, people are all over the United States. It's not just a little group out of Philadelphia, or out of the New England area, because that's where our leaders are, but we're all over the United States. And we're connected. It's very comfortable, where sometimes, different things that happen in the United States, I mean, come on, let's not even go into the whole history of the United States and all of that, but you're going to get different perspectives when it's a group with all African Americans there. You have different perspectives than, say, your general population. What's very good about the groups are the groups are aphasia-friendly. Nobody's talking up here. Nobody's talking underneath anyone. It's just a conversation. It reminds me of how we used to have in the summer, and your whole family would be there. What are those called when your family…   Lyssa Rome    Like a family reunion?   Denise Mendez     Reunion, thank you, when everybody's there. So you've got some young people there, you've got some of the seniors there, you've got the middle group there. But everybody's having a conversation, and everybody's putting a little bit of this on, we're sharing some music, we're sharing some games. And guess what, when people have a bad day, or a rough time, or they just need to vent, it's a space for them to do that as well.   Lyssa Rome    Yeah. That brings me to my next question for you, which is, you know, you've been part of these two groups plus many others. What advice would you have for other people with aphasia who are interested in starting an identity-based aphasia group?   Denise Mendez    You got to have trust, if people don't trust that this is a safe place, that this is a place that I can just say what I want to say, the way I say it, I don't have to measure my words, or people are going to judge me, because I'm using double negatives, or dropping off the INGs and things like that off your words, then it's just a more free conversation.   So I applaud anyone who would like to start an identity-based group. But just know, you can't just wake up and say, you know, I'm gonna do that tomorrow. You've got some homework to do. So do some homework, find out what the need is for the group. And just remember, you've got to be authentic, you may not be a part of the identity group. That doesn't mean you still can't be effective facilitating that group.   Lyssa Rome   I think that's great advice. And I really appreciate hearing from you about what this group has meant to you and also your thoughts about these kinds of identity-based groups in general.   Denise Mendez Yeah.   Lyssa Rome Dr. Denise Mendez, thank you so much for being part of this podcast.   [music]   Lyssa Rome Michael, I know you brought in the mission statement that you wrote, when you were starting the Black Americans with Aphasia Conversation Group. Would you like to share that with us?   Michael Obel-Omia    Yes. The Black American Aphasia Conversation Group is a place for Black people, the patient to share their stories, provide support, encourage meditative reflection, and brainstorm ways to advocate for relevant policies. This diverse, inclusive, aphasia-friendly group will discuss the unique challenges and gifts we share due to our experiences with disability and race. And it's open to all who support its mission of creating an emotional refuge for Black persons living with aphasia.   Lyssa Rome     I think that that mission statement is such an important summary of what you've been talking about, of the kind of space that it sounds like you've been able to create with this group.   Michael Obel-Omia     Well, thank you, thank you so much. With being this part, it's great for you to hear about it.   Lyssa Rome     It sounds like you've found, in that hard work and the advocacy that you've done, you found another way to make a meaningful difference for other Black people with aphasia, who are part of this group.   Michael Obel-Omia     Absolutely. Yes.   Lyssa Rome     Thank you so much for talking with us, for sharing about your group—about the National Aphasia Association's Black Americans with Aphasia Conversation Group. Michael Obel-Omia, it has been such a pleasure talking with you.   Michael Obel-Omia     Thank you very much.   Lyssa Rome     And thanks to Dr. Roy Hamilton, Doc Cunnigen, Denise Mendez and Darlene Williamson of the National Aphasia Association.   Thank you also to our listeners. For references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. There you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org Thanks again for your ongoing support of Aphasia Access. For Aphasia Access Conversations, I'm Lyssa Rome.

Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, and Thursday Night Poets.  I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Dr. Alyssa Lanzi. In this episode, we'll be discussing Dr. Lanzi's research on mild cognitive impairment and the role of the LPAA approach in serving individuals with mild cognitive impairment and dementia. Biosketch: Alyssa M. Lanzi, Ph.D., CCC-SLP, is a speech-language pathologist and Research Assistant Professor in the Department of Communication Sciences and Disorders at the University of Delaware. She is an executive committee member of the Delaware Center for Cognitive Aging Research at the University of Delaware. Dr. Lanzi is the PI of a K23 award from the National Institute on Aging to investigate the effects of an intervention designed to improve the independence of older adults with mild cognitive impairment from probable Alzheimer's disease. She is also MPI of awards that develop, test and disseminate a large-scale online database to study the language and cognitive skills of older adults to help develop cost-effective biomarkers to identify adults at risk for dementia from Alzheimer's disease. Dr. Lanzi's research broadly focuses on investigating person-centered assessment and treatment approaches for individuals with mild cognitive impairment and dementia and prioritizes the implementation and dissemination of evidence-based practice to practicing health professionals.  Take aways: The LPAA fits interventions for mild cognitive impairment too. We need to focus on training the next generation to understand the applications of LPAA to other disorders and contexts. You don't always need a standardized test, you can use goal attainment scales to measure anything. We need to be prepared to counsel individuals with mild cognitive impairment, as we are often the discipline having those conversations. When we intervene with individuals with mild cognitive impairment early, we can involve them as collaborators. There is a continuum of counseling needs that changes over time. See Alyssa's counseling plus paper in SIG 2 Perspectives.   Interview Transcript: Jerry Hoepner: Hi Alyssa. Good to see you. Alyssa Lanzi: Hi, good to see you. I'm happy to have a conversation with you today. Jerry Hoepner: Likewise, I'm looking forward to this conversation. It's kind of tradition that at the beginning of podcast we talk a little bit about your journey in your path to the life participation approach. So, I'm hoping that you can share a little bit about why an LPAA approach is so crucial to your research and clinical interactions. Alyssa Lanzi: Yeah, Absolutely. Well, thanks for having me, and I'm excited to kind of give a glimpse into how we can start to think about the LPAA approach outside of aphasia, because I think I'm a little bit unique in that way. And I am clinically trained as a speech language pathologist, and I was fortunate that most of my master's training was in a really strong university-based life participation approach model for aphasia. So, I had a large amount of experience working with Dr. Sarah Wallace and Katerina Staltari, and really thinking about group-based approaches for aphasia care. And I really fell in love with the functional nature of that model and with my master's thesis really tried to think about, well, how can we do this with individuals at risk for dementia with thinking about group-based approaches and functional care. And then I went on to get my PhD at the University of South Florida with Michelle Bourgeois. With a really strong research focus on functional approaches for mild cognitive impairment and dementia but also had the opportunity to work clinically the entire time during my PhD at voices of hope for aphasia under Jackie Hinckley, really learning about the life participation approach for aphasia. So, I feel super fortunate in that I have a lot of clinical work and exposure with the life participation approach that really has driven my research. Although I don't clinically practice with the life participation approach anymore, it really is a key foundation and a key kind of framework to how I have conducted all of my research and run the lab at the University of Delaware, which I'm currently a research assistant professor at right now. Jerry Hoepner: Excellent. Yeah. And thanks for sharing that, I really believe there is not a lot of transferability and generalizability of the LPAA in the approach being someone who has one world or one foot in the traumatic brain injury world, and another foot in the aphasia world. There's definitely some strong carryover across those contexts, and I think members of aphasia access are really interested in thinking about how that extends into those contexts. So, I really appreciate that. And like I said before, you have quite the pedigree in terms of experiences with very life participation approach minded academics, and having some of those clinical experiences, is really just so crucial for those, you know, when you step into the research world that you're doing something that really applies. So, I know you already talked about Sarah Wallace and Dr. Satari and Dr. Bourgeois and Jackie Hinckley. But are there other people along that journey that have kind of shaped the way that you think about LPAA applications to aphasia but beyond obviously? Alyssa Lanzi: yeah, I think you know, really the names that you mentioned were kind of the key mentors in the process. However, individuals like Roberta Elman, and really her approach to kind of book and learning and reintegration was structured. But flexible activities are really kind of key to my thinking, and also, as you know, an early career researcher as well. Folks like yourself and Tom and Katie really show how we can also train students in this approach as well, which is kind of being key to figuring out how I really run this lab that's based in life participation. That's not only my line of research, but also supporting the next generation. I feel fortunate in that I have mentors that really have integrated a life participation approach in many different settings from big R1 universities to smaller, R2, and R3 universities to clinical practice settings to nonprofits. And I think I've taken pieces of all of those to really support my research and teaching pedagogy, and really life participation in that way, and without aphasia access, I wouldn't have had access to those leaders and mentors in the field like yourself, and it really has given me an opportunity to have conversations with these folks, and every single conversation has really impacted and influenced my work thus far. Jerry Hoepner: I think that tends to be a really common reflection on aphasia access that everyone is so accessible. So, the name really says it, and willing to have those conversations. And certainly, that supports us in all of those avenues, research, clinic, well and academic in terms of teaching as well so completely agree with that. Alyssa Lanzi: I think that's what's a beautiful thing about aphasia access and the life participation approach is that it's not just research, either. Right? It's research, it's clinical, it's teaching, it's mentoring, it's service. And I think we will probably talk about in a little bit. But in all of my work that's really what I try to think about, I don't just try to think about, you know, research, I try to think about well, how can I study this so it can actually be implemented in clinical practice? And then how can I also teach the next generation using this approach in that way? And I think that framework, although we often think of life participation as like a clinical approach. In some ways it's really this entire framework to all those kind of core components that are necessary in terms of teaching, research, clinical care and service. Jerry Hoepner: I really love the way that you describe that, because I don't know that that's been done really clearly before. But there is a thread running through all of those pieces, and it kind of speaks to your experience with Jackie Hinckley in terms of thinking about that implementation piece, and how we make sure what we're doing matters, and is the right stuff in the first place. And obviously teaching is near and dear to my heart, and being able to frame that in a way that students understand, but also feel like it's not something that's high in the sky that you know only a few people do, but that's accessible and usable by everyone, and even for my students. I mean, I know that a lot of my students will end up in a school setting, and I know that these foundational principles of LPAA still have relevance to them. So, I say, you know, regardless of where you're going. This content matters, and it should shape the way that you think conduct LPAA work. Alyssa Lanzi: Yeah, you don't have to be at a center to conduct LPAA work, you don't have to be with people with aphasia to conduct LPAA work, and that's the cool part of it. And having these conversations is an opportunity to kind of brainstorm with one another of, well how do we take you know, from the traditional mold, how do we kind of break that and really think of it as threads that can be kind of interwoven into all these elements that are core components of our discipline in a lot of ways. Jerry Hoepner: Agreed. Maybe that's a new task for aphasia access worker to kind of map all of those pieces, because I do think not. Maybe individuals have those pieces, but it hasn't been all put together. So, I appreciate that overview. Alyssa Lanzi: And yeah, hopefully. Jerry Hoepner: well. I've been having fun re-reading and refreshing myself on your work on. I used a lot of it within my teaching so. But it's always fun to see when you read something again that you pick up something that you just didn't even like process before or you don't remember you process it, maybe. But clearly, I mean, there's this thread going through all of it about person-centered strength-based care right at the heart of all of that. It really one of the things that stood out to me the last couple of days as I've been meeting is that emphasis on fostering choice and collaboration along the way in every single step with the with the individual, with mild cognitive impairment or dementia, with their family members. And I think that's really crucial. I mean whether you're kind of choosing an external memory aid, or script, or whatever is best right. Can you talk about how you facilitate those choices? Maybe a little bit about the kinds of tools that you use on one end, but also a little bit about how you just foster a mindset of that collaborative decision making, because, you know, sometimes people can just want to defer to you and say you tell me so. I'm interested in your thoughts on both of those pieces. Alyssa Lanzi: Yeah, Absolutely. Well, thanks for the flattering words, and I'm happy. You picked out the core elements there, because I think those are really kind of the key words of a lot of the work that I try to do, and starting really with person or family centered, in that way, and it's tricky. I think a lot of people say that their work is person centered, and we can always argue. What do you mean by that? And how do you ensure that, same with functional right? But something I try to teach people, and my students are just because it's related to something practical doesn't necessarily mean it's a functional approach, either, you know, so really kind of parsing out by what we mean by that. But in particular, with working with folks with mild cognitive impairment and dementia, the goal is to really support their independence for as long as possible, and then to support their quality of life right? And a lot of times when thinking about people with chronic aphasia, it's very similar in that way, right? And that, you know, kind of gotten to a point. Not that improvements can no longer been made, but the shift is really about like, well how can you live the best life as possible? Right? How can we get you participating in as many things as possible, and that's the same mindset when we're working with people with mild cognitive impairment in particular. So, when I'm trying to design the treatment approaches that I'm testing with my clinical trials. Really, the whole framework is, how can we make something structured and standardized but flexible to that individual's needs. So, I think it starts from a treatment level, figuring out what are the active ingredients? What are the things that can't be changed, what are the core elements that can't be changed. And then, once we figure that out, then the meat of the sandwich, you know the meat of the treatment can be customizable to that individual right. And a lot of this work really comes from McKay Solberg, and views of cognitive rehab as well. But I think, when we think about person centered, we need to think about what are the core elements of this evidence-based approach? What are the active ingredients? And then what are the things that can change in between right? And when we're talking about external memory aids, it's not enough just to give somebody a calendar right. We're not seeing that individuals actually continue to use this calendar later on. And I would argue that's because of 2 reasons, one because we didn't systematically train them, and the use of it and 2 is because we didn't include them in the process from the start to the finish. And you are asking about what kind of tools and what things can be helpful. And in terms of thinking about goal development tools, a lot of times we can lean on our colleagues and occupational therapy and use a lot of the models that they have for goal development. So, they have the COPM which I'm probably going to butcher the name, but it's the Canadian Occupational Performance Measure, I believe it is, and that can be a really great tool to have a structured approach to goal setting. Same with goal attainment scaling, and incorporating some motivational interviewing techniques on top of it. But the key is that you have some type of structure, some type of evidence-based approach, on top of the conversation that you're having right, just asking somebody their interests is important, but we need to think about what's the best thing for our buck, since we have such limited time with them. So those 2 tools, in terms of goal setting have been really helpful for me, paired with using patient reported outcome measures and kind of figuring out how to use that as an initial conversation, and then paired with some further probing of tell me more about these items. Tell me more about the issues that you're facing. And then what I think is tricky, and where I relate most to my life participation colleagues are, what are the outcome tools, or what are the treatment planning tools that we can use to design these participation approaches. And it's hard because most of the outcome tools that we have are developed for looking at impairment-based improvements, right? So very decontextualized type tasks and that's really tricky. If the treatments that we're doing are all meant to be functional and person centered and improved participation. But we're not looking at necessarily improvements in worthless learning, or serial sevens or things like that. So, I couldn't figure out any tools. So, part of my dissertation work was designing a measure that was really aimed to help drive treatment planning. And then look at if there's gains an actual participation, so that tools called the functional external memory aid tool, and my lab in the last year or so have tried to do a lot of work, and coming up with free resources to train students, clinicians, and researchers, and how to use this tool to drive treatment planning because it's a little bit of a different way than we think of how to use assessment tools. Traditionally we think of assessment tools to tell us is that that person has an impairment or not and this is not designed in that way. It's really designed to tell you how to design your treatment, and a functional meaningful in person-centered way. I don't have great answers of what the tools are, but I think collaborating with clinicians and collaborating with evidence-based researchers really helps us to try to fill that gap in some ways. Jerry Hoepner: Yeah, and I think you got at part of it when you talked about goal attainment scales that you could make that a measure of any goal that the person identifies themselves. You don't necessarily have to try to fit a tool around that you can just measure what they hope to change right, or what they hope to sustain in terms of function. So, I think that's really good and really helpful. Just want to kind of circle back to a couple of things you talked about active ingredients, and how to really recognize what those active ingredients are, what the cores are, and what is content that you can do without, so to speak, made me think of some of the recent work in RTSS from the standpoint of really mapping that out. But I think that principle of my own is really important. Just to be able to say what is at the core? What do I always need to do? And what is kind of supportive of that, and can be individualized? So that's really helpful. Alyssa Lanzi: That shouldn't be on the clinician either right? If you're a clinician listening to this like that shouldn't be on you. This is on the researchers to consider from the beginning, and this should be really clearly outlined in this plan. And it is somewhat hard to figure out what some of these analyses like what are the active ingredients? But that's really, if you go to a talk, if you're a clinician on this call like that's what you should be asking, when you go to these talks like, what are the active ingredients? What do you think is really evident of what's making the change? It's not on you to decide. It's really on researchers to be thinking about this from the beginning, and not for you to try to figure out by any means. Jerry Hoepner: Yeah, I think that's a really some really sound advice, because finding out what those active ingredients are that's really crucial, and I think there's times, and I won't say who, but I reached out to a researcher once to do some work related to their work, and I said, “So do you have some place where you have more specific information about what exactly you did?” And they said “it's all in the paper” and I was kinda like no, it's not all in the paper, and I think we're getting better at that, providing that information, at least to the best of our knowledge, what those active ingredients are. And you know this is on the researcher to provide that, and then to allow that clinician to be able to work within that framework. So, I'm really glad that you said that. I also wanted to highlight the fact that you talked about your measure, and I think the acronym is FEAT right? Alyssa Lanzi: FEMAT, yep, close. Jerry Hoepner: Sorry. Missed it. I missed one letter, but we'll make sure that that is in the list of resources at the end as well, so that people know how they can access that information, and you mentioned that you're trying to make as much freely available as possible. So I think that's really helpful for our listeners to know where to find that information. Alyssa Lanzi: Yeah, the tool can be downloaded completely for free. And there's educational and training resources for free on there as well as we just publish an open access manuscript, describing with case examples of how to use it as well, because if we as researchers want clinicians to use our work. Constantly, we're hearing the biggest barriers pay walls and everything else so really trying to make this as accessible as possible, so that individuals can actually use it in their practice. Jerry Hoepner: Well, that's really excellent. I really appreciate it, so I'll double check with you at the end, and we'll make sure we have all of that information there for the for the listeners to follow up on that. So, getting into the connection and the differences between someone with aphasia and someone with a mild cognitive impairment. There's a lot of overlap and most communication supports. And as I was reading your work, I was like overlap, overlap, overlap. But there's also some ground that isn't overlapping individuals with aphasia, particularly when you get to the cognitive kinds of constructs, and so forth. So, in terms of supporting someone with MCI or dementia. What are the key distinctions that you have in your mind about how to approach that. So, distinguishing them from maybe what you would use for a language assessment, or language support excuse me, for someone with aphasia Alyssa Lanzi: I think the good thing is, there's many more similarities than differences. Right? We have this strength-based approach, this idea of participation, reintegration, isolation, depression. These are all major psychosocial factors that we know are associated with both populations and also acute. You know older adults are highest at risk. Right? We're seeing similar populations in some ways as well, so that strength-based participation-based reintegration, type approaches are all very similar. You know the key distinction or the key differences, I should say, is unlike people with a stroke, there wasn't an event that caused the impairments right, and that instead, we need measures that are really sensitive to early declines right? So, it's not like these individuals had a stroke or a brain injury, and immediately referred to speech, language, pathology. That's a very different pipeline to referral in that way. So, speech, language, pathologists need to do a much better job of advocating for our role early on where I don't think we have to do as much of that advocacy with people with aphasia now. Yes, all the aphasia folks don't come at me either because I know there's plenty of advocacy work that we need to do as well, but it it's a little bit different right, and that once aphasia is diagnosed, it's pretty clear that SLPs are the one to go to for the most part. For individuals with mild, cognitive impairment it's a bit different. So, we need to do a lot of advocacy work, and many of our tools, unfortunately, are not sensitive enough to these early declines. What's exciting is that language is actually showing as a pretty promising tool, a pretty sensitive metric. So, hopefully in the next, you know, 5 to 10 years we're starting to actually definitely be involved because we're noticing language changes or sensitive to these early declines, but so one is the early process, and the referral process is quite different. The other key difference in my mind is the preparation for the future and that individuals of mild cognitive impairment are at a very high risk for developing dementia due to Alzheimer's disease and in my work I am talking about mostly these clinical syndrome due to Alzheimer's disease is usually the bulk of my work. But for individuals with mild cognitive impairment. We really want to set them up with these tools, so that we can develop really strong habits and routines now and really rely on the strength of procedural memory, so that if they decline, they have these really good systems in place, and that's a very different mindset than people with aphasia. So, the mindset in that way is very different in our role in preparing for the future. So, I think the referrals is probably the big pipeline. How they get to you. The coping and the depression is all there. But viewed a bit differently. It's not, Oh, my God! My life has drastically changed instead it's, Oh, my God! What's gonna happen, you know, in 2 3 5 years. So, it's all those same constructs are there, but the rationale and the underpinnings are a bit different. Jerry Hoepner: I want to just go back to a couple of the points that you said again. When I'm thinking about that that early intervention or early work with someone with MCI, I'm always telling my students part of what you said that idea that we want to establish those routines and habits. But the other thing I always think about going back to our previous discussion is that's the opportunity for them to make as many decisions about their future as they possibly can, and do that planning for the future. I find that to be a really effective way from a counseling standpoint to get them involved in kind of planning their future, and also building that acceptance right like this is coming. What can I do now to kind of take ownership and to take control of that versus if I wait, then it's going to be someone else's decision. Alyssa Lanzi: Exactly. Exactly. We describe it. A lot of you want to be in the driver's seat and not the passenger seat. Jerry Hoepner: Yeah, great metaphor. And I just wanted to mention one other thing when you were talking about that the fact that language is a really sensitive measure. You believe for individuals with MCI and predictors of for their dementia. You know some great work with the dementia bank in terms of talking about collecting samples and interpreting those samples. So, I know I'm kind of putting you on the spot for this. But any thoughts about that might lead us in the future in terms of knowledge. Alyssa Lanzi: Yes, stay tuned. We more than likely have a pretty big grant coming our way, which is going to be exciting. But the current biomarker tools for detection, are costly and invasive. We're having MRI and imaging techniques which are costing, You know, so much money. Blood is becoming, you know, blood based biomarkers are at least a bit more cost effective. However, there's still quite still, quite invasive, and there's only a certain person who wants to come into a lab, you know, and do those types of things. So what we're hoping is that we can use language, and that people can provide us with language samples in the comfort of their own home, right and really reflective of these functional tools and paired with these other. You know data, this, this other data that we're collected, we can make this really kind of informed decision or inform diagnosis. So, hopefully, you know, we can get to the point where that is the case that people can kind of just answer some questions from the comfort of their own home and their smart home and their computer. And you know, on the back end we can analyze their language, and then, provide them with some information about what we're thinking in terms of diagnosis and things like that. The most exciting thing to me in my mind about language is that hopefully, we can get a sample of individuals to participate who are actually representative of those who have the disease and that with many of these imaging techniques, and with many of the blood-based biomarkers and these invasive techniques, there's only a certain type of person you know who wants to come to campus and do these things, and most of our large databases are really white, high SES folks who are just, not those who are at greatest risk for the disease. So, what I'm really hoping for with as really the area of language grows, thanks to a lot of the work that we're doing, and Carnegie Mellon are doing with Brian and Davida, and also Kim Mueller and her group at Wisconsin. Is that not only can we use it as a sensitive measure, but we can get people to participate because, hopefully, it reduces the common barriers to participation in research studies. So that's really kind of a focus of where we're going. And then, hopefully, with that information, we can better support those who are at greatest risk living with this disease. Jerry Hoepner: Right and it seems like there's kind of a secondary effect to once you have those answers. There's a lot more SLP's than there are, you know, other mechanisms for measuring those bio measures. So, if you know that contact, maybe we can contribute to that earlier detection as well, so that's fantastic. Alyssa Lanzi: Yeah, which is why we need more SLPs going in this space, and I love aphasia work. I'm an aphasia clinician at heart. But I hope we see after today and through many of my other colleagues that the world overlap so much. But we really need a lot of researchers in this space, because speech language pathologists have a lot that they can contribute, and could very soon be at the forefront of the of the diagnosis as well. So, any students on the call or clinicians wanting to go back. My labs and others are really recruiting, and we need more individuals who are interested in researching in this space. Jerry Hoepner: Yeah, that's great to share. And hopefully there are some students and professionals out there that are thinking about that so definitely need that. Well, I'm going to change gears just a little bit. You've talked a little bit about depression and other mental health issues a little bit, isolation that occurs not only with aphasia, but with mci and dementia. I think we're all starting to get a better idea of our roles as speech, language, pathologists, in terms of counseling individuals with aphasia, MCI, dementia, traumatic brain injuries, etc. In re-reading your 2021 paper about counseling, plus I was really struck by how you and your co-authors mapped out this continuum of counseling needs kind of makes me want to do the same for everything so in activities from the first symptoms and diagnosis to the end of life, and I'll refer our listeners to figure one because it's a really eloquent framework for, and timeline for those changes. Will you share a little bit about the development and kind of the purpose of that timeline figure. Alyssa Lanzi: Yeah, thank you for the kind words that was probably one of the hardest things I've ever done was writing that paper, but we knew it needed to be done for many different reasons, but really to paint the picture that SLPs have a key role from the start all the way to the finish with these folks, and that's really what that figure is trying to highlight is that we can provide both primary and supportive roles to our colleagues from prevention and education all the way through end of life. And fortunately, that figure has really resonated with a lot of people which has been really helpful and I've actually gotten a lot of feedback from clinicians who've been able to use it to advocate for their role in this working with this population and doing support groups and things like that. So that's really great, because that's the whole point of it. But what's unique about this paper is that I work on a very interdisciplinary team of neuropsychologists and geriatric psychiatrists. And it was really interesting to come at it with all 3 of our mindsets for kind of developing this, because everybody has a very different education in terms of these important psychosocial constructs. So a really big shout out to my colleagues, Matt Cohen and Jim Allison, who really also helped me push my mindset of thinking about counseling as much more than just a conversation, and really thinking about counseling, plus as we call it, in terms of everything else right, and that a conversation is only the start of it, and that education and management and advising and referrals, that's all, that's all the big piece of it. So, I think that's why we were able to really round out this figure is because we were coming at it from 3 different disciplines as well, and then being able to go back to okay Well, what's within the scope of practice, of speech, language, pathology. The other thing about this figure is you'll see that the x-axis, the way that we looked at over time was by residential status, not by necessarily MMSE score or MoCA score right, and that framework was very much from my background in life participation approach in thinking about okay, let's think about them on a continuum of like residential needs versus what is their cognitive status on like an impairment type measure. I encourage people to think that way when we think about working with older adults in particular with neurodegenerative conditions, and that not thinking about them as a numerical value in a stage on one type of those measures because I think it opens up our roles, and also shows how hopefully within that figure that you can see that the roles overlap. Right, there's some roles that we start from our first conversation that we're going to continue all the way through the end of life. The other really important thing to consider with the figure, is in our field we have a really strong understanding of like language milestones in pediatrics, right? But what we don't have a really good strong foundation is, is understanding what is typical aging right, and our role in supporting healthy aging as well. Just as we support language development in pediatrics. So that's a big piece of this figure and a big piece of the counseling article is that we have a major role like we do in language development in healthy aging development as well, and that we can do a lot to support healthy aging and prevention just like we do in language development of kids, and also like we do like with the FAST acronym for stroke or with concussion protocols and management, we just haven't, yet kind of adapted that approach to aging, and that's what hopefully this figure gets us to start to think and talk about as well. Jerry Hoepner: I think it definitely does. And I really like that analogy or metaphor comparison between the developmental milestones, because I was thinking that as I was looking at the figure, this is really similar. It kind of reminds me of, like the norms we looked at when we were in child phono or child language development laid out in the same kind of framework. So, I think that's something that is really comprehendible by the average SLP, and I think that's helpful, and I and I love how you describe x-axis in terms of those descriptions rather than numbers, just so crucial to see the person from that lens rather than as simply those numbers. So. Alyssa Lanzi: Yeah, in addition to my LPAA colleagues, my early intervention birth to 3 colleagues, or who were the closest with in a lot of ways, I definitely the treatment approaches the in-home approaches. They're in the next group, I would say. That is pretty close to LPAA as well in some ways is early intervention. Birth of 3. Jerry Hoepner: Agreed. Yeah, that's it. Another really great point. The other thing I really liked about the terms and you mentioned this: I think part of this comes out of the interprofessional kind of nature of development. But when you look at them, sure some of them are, you know, you think. Oh, yeah, that's counseling still, but many of them you don't necessarily wait to. Oh, yeah, that's in my counseling tool belt, and I think it's important for people to recognize those things are a part of that counseling process, and that can make it a little bit more accessible. I mean, we know that from an education standpoint that people are intimidated by counseling, and they feel unprepared and inadequate to carry out those steps. So, I mean just being able to see that on paper and say, I can do these things, I know these things, I think, are a really valuable part of that framework as well. So. Alyssa Lanzi: And to make sure that when we are describing counseling to our students, we're describing that as well, right, because its such a daunting thing for our students and if we help them in the beginning set up education, it really breaks down some of the common barriers to providing counseling of its daunting and scary. But a support group is one really small element of counseling that's within our scope of practice and our scope of practice does define it really well. I just think that how we describe it in articles is way too specific, and we need to think about it much more broadly and through, like the journal that you're responsible for with teaching and language. And you know we're starting to develop these models which is really helpful as well. But I agree, I think we just need to step outside of our really kind of specific way of thinking about counseling, because once again, then, by having a more broad continuum viewpoint. It really shines through our role. And why we are such key players of the team. Jerry Hoepner: Yeah, agreed. I mean, we are always going to be the ones who are put in that moment, that counseling moment we have to be prepared and stepped into it so obviously. That's my bias. But I think we always are. Well, this has been a fantastic conversation, and I could go all afternoon, but want to keep this reasonable for our listeners too. So, I want to end on kind of a broad question, just in terms of what's your advice for SLPs and other disciplines, for that matter, in terms of working with individuals, with mild cognitive impairment and dementia, specific to the use of the external strategies and supports, but kind of weaving, counseling into those interactions? Alyssa Lanzi: Make sure we're really listening to our patients and our families and take that extra second to pause and really make sure they feel valued and heard because especially for these individuals, they're scared. They may not yet see consequences in their everyday life. So, we need to really have a lot of buy in, and good rapport with them from the beginning, because they can make key changes in their life that may actually delay the onset of dementia. But they need to have buy in from you, and they we need to really promote behavior change and to do that they need to feel, listened to and heard. So, take the extra second and make sure you're doing that. Then I think, make sure that we are providing evidence-based approaches around these strategies that we are teaching and the 3-step approach by Solberg and Mateer and the pie framework. All of these, you know, meta-cognitive strategy frameworks. It starts with education, and we need to make sure that our clients have a really big education of what even is the strategy? What are all the components of the different strategy? Why is it they are even using the strategy right? Don't, jump into training the strategy yet, really start with the education and use the teach back approach, and make sure that they can help you in that way and then make sure you also don't view your approach as linear, things are going to change right, and you're going to have to go back a step and go to education. But you know I think functional is key and important, but it doesn't mean that we take away the evidence based, either right. And it's really thinking about how to integrate both of those things, and being honest with yourself and your client if things aren't working, and you need to readjust as well. But if your patient feels valued and heard, then that's the first step, and we need to make sure that we're continuing that step all the way through to the end of the sessions. Jerry Hoepner: Absolutely agree. Well, again, it's been a fantastic conversation. So really, thank you so much on behalf of Aphasia Access for your time and your insights and hope to see you again soon. Alyssa Lanzi: Yes, thank you. Please feel free to reach out. And if you ever see myself or my Doc students, Anna or Faith, or my colleague, Mike Cohen, at a conference. Please say hi to us as well. We love talking about our work and brainstorming with others, especially in the LPAA world. Jerry Hoepner: Sounds terrific. Thank you, Alyssa. Alyssa Lanzi: Thank you. Jerry Hoepner: On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access. Articles & Resources: Cohen, M. L., Harnish, S. M., Lanzi, A. M., Brello, J., Victorson, D., Kisala, P. A., ... & Tulsky, D. S. (2021). Adapting a Patient–Reported Outcome Bookmarking Task to be Accessible to Adults With Cognitive and Language Disorders. Journal of Speech, Language, and Hearing Research, 64(11), 4403-4412. Lanzi, A., Burshnic, V., & Bourgeois, M. S. (2017). Person-centered memory and communication strategies for adults with dementia. Topics in Language Disorders, 37(4), 361-374. Lanzi, A., Wallace, S. E., & Bourgeois, M. S. (2018, July). External memory aid preferences of individuals with mild memory impairments. In Seminars in Speech and Language (Vol. 39, No. 03, pp. 211-222). Thieme Medical Publishers. Lanzi, A. M., Saylor, A. K., Fromm, D., Liu, H., MacWhinney, B., & Cohen, M. L. (2023). DementiaBank: Theoretical Rationale, Protocol, and Illustrative Analyses. American Journal of Speech-Language Pathology, 32(2), 426-438. Lanzi, A. M., Ellison, J. M., & Cohen, M. L. (2021). The “counseling+” roles of the speech-language pathologist serving older adults with mild cognitive impairment and dementia from Alzheimer's disease. Perspectives of the ASHA special interest groups, 6(5), 987-1002. Links:  FEMAT Website  FEMAT Open Access Manuscript  Delaware Center for Cognitive Aging Research- Free Memory Screenings  Counseling+ Open Access Manuscript  DementiaBank Open Access Manuscript  DementiaBank- Free Discourse Protocol 

Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Katie Strong, a faculty member at Central Michigan University where I lead the Strong Story Lab. I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Mary Ann Eller. We'll be talking about incorporating the Life Participation Approach to Aphasia (better known as LPAA) in Acute Care Settings. Let me first tell you a bit about our guest.   Mary Ann Eller, MA, CCC-SLP is the Assistant Manager for Rehab Services in the Speech and Language Pathology Department at Duke Regional Hospital in Durham, NC. She has worked in the Duke University Health Care System since 1989. She specializes in evaluating and treating adults with neurogenic and swallowing disorders in acute care and inpatient acute rehab. Her current professional passions are finding functional, practical, and patient-center approaches to the care of people with aphasia, dementia and all cognitive/communication problems.   In this episode you will: Receive a permission slip to do secret therapy. Hear about how the Life Participation Approach to Aphasia Core Values can be implemented into acute care. Understand how implementing the Life Participation Approach to Aphasia supports the Joint Commission standards on health literacy. Be empowered to welcome interruptions and struggles and embrace the messiness and the creativity and the joy of using LPAA in acute care.   Katie Strong: Welcome Mary Ann! I'm just so excited to have this conversation with you today! And we were just in Durham, at the Aphasia Access Leadership Summit, where you showcased your beautiful city. Thanks for hosting us.   Mary Ann Eller: I'm really excited to be here and very honored that you asked me to do this podcast.   Katie Strong: Well, I'm excited for people to hear about your thoughts. And as we get started, I wondered if you could share a bit about your own speech language pathology journey, and about the hospital setting you work in.   Mary Ann Eller: I grew up in Pittsburgh. I went to the University of Pittsburgh for my undergraduate and graduate degree and then I went to the Shock Trauma Center in Baltimore for my CFY. And that's where I fell in love with acute care, you can't get more acute than that. Then I moved to Durham, North Carolina and I have worked at Duke since 1989, which is 34 years if you're counting. And I started when I was five! It's been a great experience. I've worked mostly in acute care and acute inpatient rehab. When I was new in my career, I loved the excitement of acute care. And I think as I grew older, I fell in love with rehab because I have more personal experiences with being in the hospital and with myself and with my parents. I just saw how important effective communication was at that time in people's lives. And that's what I really want to talk about today.   Katie Strong: Yeah, I'm excited for this conversation. And as we dig in a little deeper, tell me how you became interested in applying the Life Participation Approach to Aphasia (LPAA) to acute care settings.   Mary Ann Eller: Yeah, this is an interesting story to me. At the University of Pittsburgh, Audrey Holland was there at the time. As people who know her and her work, she is known for being extremely functional. So, I sort of grew up professionally knowing that being functional was the way to go. That was in the late 80s, so the LPAA had not been developed yet, which was around the year 2000, I believe when the impairment-based focus of therapy was recognized as not meeting the mark. It wasn't really helping people where they were at. And so, this LPAA not being a therapy approach, but more of an idea. LPAA is a philosophy of treatment, not a specific treatment approach. So, we could still use the treatment approaches that we knew and were evidence-based, but the philosophy of what we are using them for became more widely known in 2000. So, I didn't know about LPAA until about five years ago, even though I was familiar with being functional. So, in my little isolated world, I wasn't doing CEUs on aphasia because I needed to be a generalist. I had, by that time become a manager in the department and needed to stay up to date on swallowing and dysarthria and cognition. So, I wasn't really in the world of aphasia. So, I continued to do impairment-based therapy for a long time.   But I did secret therapy, which I knew is what Audrey would want me to do. And it was, I would do the things that I knew the patient and the family needed me to do but I'd feel a little bit guilty doing it because I knew it wasn't “evidence- based.” And I wasn't doing the, you know, Response Elaboration Training, or whatever it was that I had learned, but I would meet their needs. So when, about five years ago, I went to an Aphasia Access Conference and Audrey was there, and I got to see her again. And she remembered me, which was really an honor. I was validated that the things that I had been doing in just my nature were correct. They were the best thing for the patient. That was really validating. I was always, and I'm saying this for any clinician who's out there listening, to not be afraid. I was afraid that I was doing it wrong. And I had been doing it for many years, had lots of experience, but I didn't want to get around other professionals that were more recognized in the field, because what if I was doing it wrong? Or what if there was a new approach that I didn't know about? And when I got there, it really wasn't that atmosphere at all at Aphasia Access. It was very welcoming, and it was very validating. And I realized that a lot of my instincts were right.   Katie Strong: I love it. So, it's almost like the LPAA shone a light on that secret therapy, and really validated you.   Mary Ann Eller: It sounds so funny that “secret therapy” but it's really what it felt like. So, I got to bring it out into the open and it was a secret no more.   Katie Strong: Yeah, I love it. Well, I mean, obviously, then you feel like LPAA has value. Do you think LPAA has a role in acute care? And how do the Life Participation Approach Core Values apply to this setting?   Mary Ann Eller: That was a great thing that I had to work out in my brain. Absolutely, it has a role in acute care. What I was learning about LPAA, when I first started learning, was a lot of information for when the clients were further along down the line. So, they were in the community, and they were participating in their goal setting, and they were deciding, “hey, I want to go back to work.” And that's what the speech pathologist was working on. And those things were wonderful, but that's not the setting I was in. So, I started to think about how these Core Values can apply to acute care. The Core Values, I'll read some of them right here, there's five of them. The first Core Value of LPAA is that “the goal is an enhancement of life participation.” So, when you're waking up with a stroke, and aphasia, the life you have to participate in is in a hospital bed. So yes, that applies. Number two, “all those affected by aphasia are entitled to service.” You are entitled to service if you have aphasia, in addition to swallowing and dysphagia services. That's important too, but you are entitled to service if you have aphasia, you don't skip it in acute care. Number three, “both personal and environmental factors are targets of assessment and intervention.” That is a lot of what I do in acute care with LPAA, I am looking into the environment, which includes the nurses and the nursing assistants, and the family, and the call bell, and the bathroom and all of those things that are in the environment. And that is what I am targeting and that's LPAA. Number four, “success is measured by documented life enhancement changes.” It is an enhancement of a person's life, like if they can use a call bell and get to the bathroom. If you've ever been in that situation, that is the most important life-enhancing really, lately. And then number five, “emphasis is placed on availability of services as needed at all stages of life with aphasia.” That includes the beginning, so yes, it absolutely has a place in acute care.   Katie Strong: I love this. I feel like it's preach, you're preaching it girl. You know, it's just, I mean, I think for many, many years, we've thought about, “oh LPAA is just something that you do after you try everything else.” I love hearing you talking about bringing it into acute care just right from the beginning, it's so important.   Mary Ann Eller: If I could say one more thing, I think the weight of responsibility for setting goals is one of the things that's talked about in LPAA. You want to be partners with the person who has aphasia in goal setting. And of course, you want whatever it is that they want to work on to be the center. However, when you wake up with aphasia and you have no experience with it whatsoever, you can't expect someone with aphasia to be able to set their goals of communication at that moment. So, I think that that's the biggest difference with the approach and thinking of LPAA. In acute care, the responsibility is more so on the clinician and the family to get to know the person and what's important to him and set the goals at that stage. Slowly educating and then giving the responsibility over to them as soon as possible to set the goals.   Katie Strong: Beautiful, beautiful. We talked about it earlier, the importance of being able to communicate effectively in your health care setting. And one consideration for LPAA is that JCAHO, or the Joint Commission has placed a real high value on environments that support patients and having conversations about their health care to understand their health status and engage in their own health care decisions. Could you talk about how LPAA supports the Joint Commission standards on health literacy?   Mary Ann Eller: Yes. And let me just say, for people who aren't familiar with hospitals, the Joint Commission is the regulatory board that comes in once every two or three years, and they tell you whether your hospital can continue to operate or not. So, the standards are very, very important. And I'm going to read you one of the standards that they have, and I think every speech pathologist is probably going to be, as they hear the standard, is going to be like “Well, wait, that's not really happening with my people with aphasia”. And I think that's where a real opportunity lies for us. You, I think, are attaching the standards?   Katie Strong: Yes, I'm going to. I'll put them in the show notes so listeners can check them out and we'll have a link to the standards there.   Mary Ann Eller: Okay, so one of the standards says that patients are expected to receive information about their care so they can make an educated decision, be listened to by their providers, and the hospital is required to identify patient communication needs and provide services to meet them. And so, you think about maybe someone who speaks another language, or maybe someone who is deaf, or someone who is illiterate. And those are all most of the things I think that people think about when they read that standard. But this also includes people with dementia, and people with aphasia, because you have that diagnosis, doesn't mean that you're unable to communicate. It means that you need special supports to be able to communicate and a lot of healthcare providers are not aware that speech pathologists can offer that support. And so, I think that's where a lot of our work lies.   There's a quote that I like to use in my talks, it's by George Bernard Shaw, it says, “the single biggest problem in communication is the illusion that it has taken place.” And think that there are so many boxes that are checked in acute care, like “the nurse provided education on stroke, and how to prevent further strokes.” And they check the box, and they do a great job, I'm not getting down in that. But if you have aphasia, you did not receive that communication, she communicated it to you. I communicated something to you but that doesn't mean that you received it. And people when they have a stroke, or a brain tumor, whatever it has that produced aphasia, you and their families are in a state of shock, so you're not able to absorb the information. So, I think that that is one thing we need to really be cognizant of when we are trying to change the culture of a hospital.   Katie Strong: Absolutely. And I was thinking of some of the materials you sent me to take a look at in preparation for our conversation today like that Joint Commission talking about communication requiring that two-way process of expressive and receptive or receiving and understanding, you know. That information is really important, very important.   Mary Ann Eller: Yeah, yeah, absolutely.   Katie Strong: And I think sometimes too, we know that our clients or our patients that we are working with take more time to be able to understand what's going on with them and their health care.   Mary Ann Eller: Yeah, and a lot of times what we use to make that happen isn't really that complicated. It often involves slowing down, turning off the TV, sitting down at eye level, and stopping periodically to say, “did you get that?” and “repeat that back to me.” And that's for everybody, not just people with aphasia. It seems like it should be common sense, but it's really not. People in hospitals, especially in the last three years, have been under a lot of pressure and have to do a lot of things. And so, communication can often get lost.   Katie Strong: Absolutely. All this sounds great Mary Ann, but what do you think might prevent some SLPs from embracing LPAA framework in acute care settings?   Mary Ann Eller: That's such a good question because I went through that for 20-30 years, I guess. I didn't embrace it because I didn't know about it. I think that one of the biggest things is being at the Aphasia Access Conferences. I loved it and I loved having the honor of presenting last time we had it, but I just thought, “gosh, I want this to get to people who don't know about it.” Because there are tons of clinicians who maybe hear about it in grad school and perhaps, they go out to their placements and the supervisors maybe don't know about it. And so, they don't put it into practice, or they don't know exactly how to integrate it into practice. I think that number one, that's the biggest thing that's going to prevent clinicians from using it is because they don't know about it.   I think the other thing is that the “secret therapy” that I talked about is realizing, and if nobody's given you this permission slip, I am giving it to every clinician out there. Here is your verbal permission slip, please treat the communication elephant in the room. Whatever it is with somebody in acute care. If they are struggling to order a meal, if they are struggling to call the nurse, if they're struggling with telling you something or talking to the person beside the bed, that's what you work on. Work on what is right in front of you. You don't have to complete an entire Western Aphasia Battery. You don't have to make sure that you have them name 10 things. Those things all have a place, and I think we can fit evaluation and treatment in, but please deal with the person who's right in front of you, not the agenda that you brought into the room. So, there's your permission slip. I think people don't know how to document it and that's okay. I have a couple suggestions a little bit later when I talk about that. I think they feel it takes too much time and it really doesn't, I think you can do these things instead of the big agenda that you brought into the room. I think these people are going to be dealing with aphasia for a long time. And so, they will get to a speech pathologist who will do the more standard evidence-based treatments when they're appropriate. I'm not saying they're never appropriate, sometimes they are. But in my experience of 34 years, a person in acute care with aphasia needs a ton of education, a ton of successes, and just a lot of validation that here's your recovery process, here's what's going to happen. They are in shock, and they don't know how to deal with things, and I think we are the ones who are speaking to that. Everybody else has their silo that they're speaking about with their blood pressure and their arm and their leg and all of these things. But communication is the soul of a person and I think reassuring those sorts of things and giving them successes at that stage is really vital. So yes, that's your permission slip.   Katie Strong: Yeah, yeah, received. And we're going to make lots of copies of that permission slip and mail them out to everybody. So, you touched on this a little bit, but we'd love to hear some ideas that you have about how to incorporate LPAA principles into acute care.   Mary Ann Eller: Here are some practical things. Honeycomb Speech Therapy is a great service that sent out or made available some free checklists for different settings. I downloaded one of those and so that's a good place to start. So, there's, I'm looking at it now, the Functional Needs Checklists by Setting and looking through using call light, using the menu, asking medical questions, and following safety precautions. I think as a clinician, starting to think through your aphasic patients in acute care by communication need versus impairment.   The other thing I'll say that's a really good way to incorporate this is whatever templates you're using in your electronic medical record. The way that we have done ours in the past has been by impairment because that's how we're trained. “How can you talk?” “How can you comprehend?” “How can you read?” “How can you write?” And in our brains we're pulling it together and we're knowing how this might affect their ability to use the call bell. But I think using a table or a checklist that automatically makes you have to pull it together and give a set of supports that will enable the person to do that or not, depending on how severe they are, is one way to make sure that that you incorporate LPAA.   Katie Strong: I love that. And I love the shout out to Honeycomb and Sarah Baar. We actually had her on the podcast. It's been a couple of years, but I think it's Episode 57 if listeners want to check out a little bit more of hearing her thoughts. But I agree, helping yourself be a little more strategic about how you're going to address all of these areas. Because, as you said earlier time is I mean, time is essential everywhere but in acute care, it's really the big commodity.   Mary Ann Eller: Yup. Another thing is to welcome interruptions because when you're in acute care you will be interrupted. And the nurse will come in to give meds and I think to go into a patient's room open for whatever happens. So that when the nurse comes in and gives meds, you are demonstrating some supported communication techniques. So maybe you always have a pad of paper and a pen or a whiteboard. And so, you write down the medicine, and then you ask the nurse, “what's the medicine for?” and they say, “blood pressure,” and then you write down blood pressure, you show it to the patient, and they nod. And then they have experienced what JCAHO was asking us to do, which is communicating what's happening to them. And not only has that happened, but you also are educating the nurse to see how successful that communication is when you write down a word, for example. Welcome the interruptions to show communication.   I've had doctors come in and explain what's going to happen next for their discharge and I write that down or slow it down or whatever the support needed is. Same with social work. There are so many opportunities to use functional communication and LPAA in acute care. As I was thinking through this question, one of the most effective ways that I remember using it in my recent past is with a patient that had Wernicke's aphasia. And it was at the height of COVID, so everybody had masks on, including her. And she was very, very fluent, and she could not understand spoken language, I mean, lots of it. She could walk, you know, and that made all the more frustrating for her, they'd say, “you can't walk by yourself, you need to sit down.” Well, she didn't understand what they were saying. So, she might say in return, “fine, how are you?” And so, people thought that she was crazy. She was not crazy, she had Wernicke's aphasia. She did not understand spoken language. And so, when we finally got the consult after the woman was put in a Posey Bed, I was able to tease that out. I was able to educate the staff on “hey, if you do X, Y, and Z,” which included writing down what you're saying, a key word, then she can look at it, she can look at the context, and she can follow your directions. And it was the biggest difference. I mean, speech pathologists really do a great service for people with aphasia in acute care. So, those are just a couple of things that I thought of.   Katie Strong: I love it. I love it. Well, you alluded to it earlier, but I'm going to invite it back into the room now. That is the elephant in the room, hello dysphagia. How does an acute care SLP balance the needs of the patient with dysphagia and also support communication issues as well?   Mary Ann Eller: That is a good question, and I don't find it difficult at all to do that. And the reason I don't find it difficult is because I've embraced some messiness in my evaluations.   Katie Strong: Tell me more!   Mary Ann Eller: And sometimes that's hard to do, especially early in your career. Or if you are a very focused kind of Type A organized person, which a lot of speech pathologists are and that's why we're so good at our jobs. But it is a little bit messy. And what I mean by that is, you can easily do both at the same time. You can evaluate dysphagia and you can evaluate their language. You can have them following commands with your clinical swallow even though you're not saying hold up two fingers and point to the window or whatever you were taught. You can say, “hey, would you pick up that glass of water?” without pointing to it and see if they do it. You can ask them open-ended questions and closed-ended questions to see what kind of language they have. While you are writing your recommendations on the whiteboard, you can have them read it back and assess their reading in that way. There's lots of things that you can do to assess both at the same time. So, it really doesn't take that much more time, it just takes a difference in how you think about it.   Katie Strong: Powerful stuff. Yeah. I love that it's not, doesn't have to be mutually exclusive, and couldn't and shouldn't be. I'm sure our listeners would be interested in exploring some of the resources that influenced your thinking about this topic of LPAA. Would you be willing to share a few?   Mary Ann Eller: So, one that I read 8 or 10 years ago was by Lyn Turkstra. And I talked with her about this at a conference once and it was really interesting. It's on Inpatient Cognitive Rehab, Time for a Change. I can't remember the year that she published it.   Katie Strong: I think I've got it here, it's 2013. And listeners we'll have all these resources in the show notes for you, too. But yeah, it's a 2013 publication.   Mary Ann Eller: I talked with her about it at a conference once and she said that she really kind of had a hard time getting it published because it was so against the grain at the time. And basically, what it was is inpatient rehab, for those of you who don't know, is after acute care oftentimes. So, it may be within a week of having a stroke and maybe you stay for two weeks at this point. So, within the first month of having a stroke and having aphasia. So, Lyn Turkstra's thinking was, we're programmed and taught to do things in a world of rehab that used to be months long and now it's only a couple of weeks and now earlier than it used to be. So hey, why don't we focus on some other things like education and laying the foundation and making sure that there's a therapeutic alliance with speech therapy so that the person knows, you know, down the line, this is the person you're going to go to and have a good experience with that. That was the first paper that got me thinking.   And then after I started going to the Aphasia Access a few years ago, I looked up an old paper of Audrey Holland's that was Early Aphasia Management and Acute Care. And that was in 2001 that she wrote that. That talks about a lot of the same things, is that we don't have to do an entire Western Aphasia Battery, but let's take care of their actual needs in acute care.   I loved Roberta Elman's CAPE checklist and I felt kind of dumb when I went to Aphasia Access and I started asking people, “hey, I'm in acute care, and I'm thinking about XYZ.” And they said, “oh, well, that's what CAPE does.” And I was like, “what's CAPE?” I just didn't know. And CAPE stands for, it's a checklist of four interventions, C is connect with the person with aphasia, A is augmentative communication, P is partner training, and E is education and resources. Basically, it's if you do these four things in the very early stages, then you've got your bases covered. And it's like, Oh, that's awesome. I wish I would have thought of that. I'm just glad she did.   Katie Strong: Before you move forward, I just want to say thank you for being so open about feeling uncomfortable that you didn't know things. And I guess from my aspect, I think it's also for maybe listeners who are not practitioners but are researchers putting frameworks out there. We really need to be better at getting our work out to the people who can implement it, you know? So, I mean, I think it takes both sides of things to really get it. You can have beautiful, evidence-based work but if it doesn't get into the hands of the practitioners who are using it, it just doesn't matter. So, thank you for being so open about that and I hope that, I'm thinking that it probably resonates with a lot of the listeners here too. That you know, we don't always know what we don't know.   Mary Ann Eller: Yeah, yeah. Thank you for that. You know, it's funny, because even yesterday, I have a lady who has been in the rehab unit for a really long time, for a variety of reasons. But she has pretty severe aphasia, and I was looking over these notes for this conversation today and I realized as I went through the CAPE that I didn't provide her with any educational resources. It's like, wait a minute, I didn't do this. And it's just, you get caught up in the day-to-day things, even if you're invited to do a podcast about it. And sometimes it's just one of those things. Nobody's perfect. But I think if we can have some standards in front of us and go back to them, that we're going to do a great job, that the frameworks are out there. And I guess the other paper I wanted to mention was also by Roberta Elman it's, “Are we missing the forest for the trees?” and I love that.   Katie Strong: It's a great title.   Mary Ann Eller: Yeah. It was like, okay, we're doing all this stuff for aphasia but the person can't communicate when they get home. And I really, really liked that stark reality and I looked back on a lot of my patients, and I'm like, “ wow, I did a great job while they were in rehab.” But I wonder how they're doing at home because I didn't really work with her husband that much. And that is a failure on my part. And, you know, we do better the next time. But those are the things that really influenced how I thought about this.   Katie Strong: Fantastic. Well, we'll make sure to have links to all of those articles and resources in the show notes. Mary Ann, you've been thinking about applying LPAA in your acute care work for a while now. Do you have any ideas that you could share with us that you have in the works in your own practice?   Mary Ann Eller: Yeah, I have a couple. Well, one of the things that I did and it's a very specific intervention, is I developed a Picture Menu because I was doing a lot of work with dementia care and nutrition because of an initiative in our hospital with geriatric care. And dementia is a place where nutrition is often overlooked because they're usually in acute care because maybe they fell or lots of reasons. And the tray ends up getting put in front of them but because of their dementia, they don't eat it and then they start getting sicker and sicker. So, because of that, I realized, even if they could eat, they might not want the tuna fish sandwich that's in front of them, because that's the standard tray that you get if you don't order your meals. And they don't order their meals because they can't communicate. You know, it's not just dementia, it's people with aphasia. And our menus were extremely word based. They were great but they had a lot of words to them. And if you can't read it for a variety of reasons, maybe you're blind, maybe you speak a different language, maybe you're illiterate, all different reasons. Then the person comes up to your bed and takes a really great bedside order like a waitress on an iPad, but again, all words. I teamed up with some people at my hospital and we went down to the kitchen, and we took pictures of all the items on the menu, and we put it on a big giant, laminated menu that we bring to the bedside and have them point to it. So yeah, and I've trained the patient menu techs, the people who actually take the orders, to use it. So, it's a work in progress because it's an extra step but yeah, it's really useful for the people that can use it. So, that's one thing.   The other thing is the idea that I had, and it is not flushed out at all. I'm just gonna like put it out there and if somebody wants to steal it and do it before I do, feel free. But in my hospital, which is Duke Regional Hospital, it's part of the Duke System, but it's a smaller community hospital made up of about 380 beds. A couple of brilliant speech pathologists teamed up, and developed a trach team. And the trach team consisted of a pulmonologist and a respiratory therapist and a PT and an OT and the main players that revolve around trachs. And through a lot of hard work, they were able to do some culture change and practice change and get these patients with trachs taken care of through weekly rounding and all sorts of focus changes. And I thought, why can't we do that for people with aphasia? Or communication, just have a communication team? And I don't know what it's going to look like yet but why can't we get the players? I mean, maybe it's just the speech pathologist. But identify in my hospital through speech pathology consults, okay, here are the most vulnerable people to not get their needs met in acute care because they have global aphasia or severe dementia and they're on our caseload. Let's put them on a special list and let's give them special attention in some way and have a communication team. And as you round on these patients, you let the rest of the hospital see you doing this. You let them see how to intervene with these people. And it catches on so that they then learn these techniques, whatever they may be. We act as advocates for these people that are particularly vulnerable. Again, I don't know how it's going to work yet, but that's an idea.   Katie Strong: Yeah, I love it. And I would love to hear how it unfolds, so.   Mary Ann Eller: Me too.   Katie Strong: Yeah. Okay. I'd like to take it a little bit further because you're the manager of a department, right? So, talk about maybe a few tips in transitioning to an LPAA focus with a staff that isn't particularly familiar with that philosophy.   Mary Ann Eller: That is a really great question, and there's not one answer. And I'd love to bring in your friend, Natalie Douglas, in implementation science to speak on this. I'll tell you what I did and then I'll tell you what a bigger department might do. I have myself and five full-time speech pathologists, We all have varying levels of familiarity with LPAA and we all have been practicing in some form or fashion. So, I did an anonymous survey, and I asked some questions like, “how comfortable are you seeing people with aphasia?”, “have you ever heard of LPAA?”, “how comfortable are you using supported communication techniques?” And I did it anonymously because everybody is not going to want anybody else to know that they're not comfortable with it. So, even if there's just one person on my team who doesn't know LPAA or who isn't comfortable, I don't know who it is, I have an idea, maybe. But I'm going to put it in front of everybody and say, “hey, there's one person on our team who's not comfortable, let's focus on this.” And so that's what I did. My team is fantastic and they are very open.   And so that's what we did. We had some focus teaching on it we watched some of the Aphasia Access videos on supported communication and LPAA. And then we changed our templates to include some tables that I talked about before that have the checklists on them. I think though, and I had a conversation last night with Kim Irby who is the interim chief over at ‘Big' Duke who has like, I don't know, 40 or 50, speech pathologists. And I asked her, I said, “what have you used with bigger departments?” And she had a really good point, she's like, “you know, education alone is not enough, it's not going to produce a behavior change. People are going to think their behavior is changing and they're going to think, through doing LPAA, and they might be. But really, you have to have people be able to be in the moment with a coach and do it together.” That can be tricky. I mean, you've got people with varying levels of comfort, varying egos, varying all sorts of things. And so, she and I thought, you know, I think probably the most practical way would be to educate and then pair people up together as peers and see a person with aphasia. Try things together then come back and let's all talk about it. It's not, “hey, I'm going to go with you as your boss and make sure you're doing this right.” That would be like totally not cool. So, I don't know, again, I want Natalie to tell me how to implement this.   Katie Strong: We all want Natalie to tell us what to do, for sure. But I love this idea of learning together, right? That you're not imposing “this is what you have to do.” But really, you know, because I do think that the LPAA approach takes your own style...Each person delivers it in a different way, right? And it's different with each patient that you're with because it's personalized.   Mary Ann Eller: Absolutely. And you can't teach that. It's not an agenda, it's an attitude and an openness, armed with the goals that you have, and armed with the core values of LPAA.   Katie Strong: Yeah, I do really love and thinking back to the Turkstra article you were talking about and just that importance of therapeutic alliance with our discipline, right? So that then later on, they think about speech pathology as a positive resource to help. Beautiful. Okay, Mary Ann, as we wrap up, do you have any final thoughts you'd like to share with our listeners?   Mary Ann Eller: I want them to remember the permission slip I gave them. I didn't give it to them, Audrey Holland gave it to them in 1989. Okay. And we're carrying it forward and there is a permission slip to work on the communication elephant in the room. Whatever it is, that is your goal. I think, I guess in my mind, early aphasia intervention should be guided by the person with aphasia's need in the moment first, then the bigger picture. I go in with a really, really loose agenda and I'm open to anything. I welcome interruptions and struggles and I think that that is the messiness and the creativity and the joy of using LPAA in acute care.   I've been a patient in the bed for health reasons and I've sat next to my parents in the bed. I think that once you do that you realize how not only practical but necessary it is that we change our focus on communication at this stage of recovery. Because you don't care what the doctor knows, you care that the doctor cares and can explain it to you in a way that you can make your decisions. And that's the power we have. We've all had health care workers and seen them who have been outstanding and who have been terrible. I think we obviously want to be outstanding. And it doesn't take a lot to be outstanding when you know what your job is, which is to help the person with aphasia to communicate and to be understood in whatever supported techniques that we have and that is our job. And I think that is an amazing privilege. Really, I look at it as a privilege. We are inserting ourselves into a person's worst day and we are the person that walks in there and has the power to help them do two of the most important things, eat and communicate.   Katie Strong: I agree.   Mary Ann Eller: So, I think that those are pretty powerful and I think that it's a real privilege to be able to do that.   Katie Strong: Thank you, thank you. I feel like you've just given us some gold that we need to really admire and take out and show off. Right? That we need to let all of it shine and really take these important pieces about changing our practice in acute care. And really helping people be able to understand and have conversations about their health care so they can participate in really important conversations that impact their life.   Mary Ann Eller: I hope so, I hope so. And I'm not a researcher, I have not done papers and you know, all of those kinds of things. And I used to feel a little bit intimidated by that. It's like, well, do I really have anything to say? And I realized as time goes on, it's like, yes, absolutely. And I want to really reach out to the clinicians that are listening to this. Please use your voice. Please reach out for partners. If you hear somebody at a conference or you reach out to me if you want to, if you're listening to this. Just grow your knowledge and grow your ability to this great job that we have.   Katie Strong: Thanks for a real, practical and inspirational conversation.   Mary Ann Eller: Well, thank you for letting me have it.   Katie Strong: Thanks, Mary Ann.   On behalf of Aphasia Access, we thank you for listening to this episode of Aphasia Access Conversations Podcast. For more information on Aphasia Access, and to check out our growing library of materials, go to www.aphasiaaccess.org. And if you have an idea for a future podcast topic, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.   Guest Contact Information   Email Mary Ann at mary.eller@duke.edu   Resources   Aphasia Access LPAA Training Videos (LPAA 101, LPAA, Core Value, Communication Access- Fundamental Techniques) https://www.aphasiaaccess.org/videos/ Chapey, R., Duchan, J. F., Elman, R. J., Garcia, L. J., Kagan, A., Lyon, J. G., & Simmons-Mackie, N. (2000). Life Participation Approach to Aphasia: A statement of values for the future. ASHA Leader, 5(3). https://leader.pubs.asha.org/doi/10.1044/leader.FTR.05032000.4 Elman, R. J. (2014). Aphasia intervention: Are we missing the forest through the trees? 44th Clinical Aphasiology Conference, St. Simons Island, GA. http://aphasiology.pitt.edu/2529/ Elman, R. J. (2020). C.A.P.E.: A checklist of four essential and evidence-based categories for aphasia intervention. Chapter 2. In A. L. Holland & R. J. Elman (Eds.) Neurogenic communication disorders and the Life Participation Approach: The social imperative in supporting individuals and families (pp. 21-52) Plural Publishing. Holland, A. & Fridriksson, J. (2001). Aphasia management during the early phases of recovery following stroke. American Journal of Speech-Language Pathology, 10(1), 19-28.https://doi.org/10.1044/1058-0360(2001/004) The Joint Commission: Advancing Effective Communication, Cultural Competence, and Patient- and Family-Centered Care: A Roadmap for Hospitals. Oakbrook Terrace, IL: The Joint Commission, 2010. Turkstra, J. S. (2013). Inpatient cognitive rehabilitation: Is it time for a change? Journal of Head Trauma Rehabilitation, 28(4), 332-336. https://doi.org/10.1097/htr.0b013e31828b4f3f     If you liked this episode – more listening… Additional Aphasia Access Conversations Podcast episodes relating to the topic of acute care and applying LPAA to different settings.   Episode #57 Patient-Centered Home Programs Across the Continuum of Care for Individuals with Aphasia: A Conversation with Sarah Baar.   Episode#99 Communication Partner Training for Health Care Professionals with Dr. Jytte Isaksen   Episode #38 Broadening the Role of the SLP in Acute Care Assessment: A Conversation with Robyn O'Halloran   Acknowledgements – A special thank you to Amanda Zalucki from the Strong Story Lab at Central Michigan University for their assistance in the transcription of this episode.

Welcome to this edition of Aphasia Access Aphasia Conversations Podcast. My name is Janet Patterson. I am a Research Speech-Language Pathologist at the VA Northern California Healthcare System in Martinez, California, and a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their efforts in engaging with persons with aphasia and their families through a variety of educational materials and resources. I am today's host for today's episode that will feature Dr. Jacqueline Laures-Gore. These Show Notes accompany the conversation with Dr. Laures-Gore but are not a verbatim transcript.     Dr. Jacqueline Laures-Gore     Dr. Laures-Gore is a professor in the Department of Communication Sciences and Disorders at Georgia State University in Atlanta, where she directs the Aphasia and Motor Speech Disorders Laboratory. Jacqueline's work spans topics in aphasia and motor speech disorders. For the past several years she has investigated the relationship between integrative health practices and aphasia rehabilitation.     In today's episode with Dr. Laures-Gore you will hear about: the relationship among stress, resilience, and coping skills, recognizing and measuring physiological stress and perceived, self-reported stress, the interaction of stress, anxiety, and fear, and the role integrative health practices can have in daily life and in aphasia rehabilitation.     Dr. Janet Patterson: Welcome to this edition of Aphasia Access Conversations. Today I am delighted to be speaking with my friend and colleague, Dr. Jacqueline Laures-Gore. Jacqueline is a professor in the Department of Communication Sciences and Disorders at Georgia State University in Atlanta, where she directs the Aphasia and Motor Speech Disorders Laboratory. Jacqueline's work spans topics in aphasia and motor speech disorders, including investigating working memory in persons with aphasia. In motor speech disorders, she and colleagues examined topics such as intelligibility in people who have dysarthria, and speaker and listener perceptions of speech in persons with dysarthria. She is a co-creator of the Atlanta Motor Speech Disorders Corpus, which is a comprehensive spoken language dataset from speakers with motor speech disorders in Atlanta, Georgia. This collaborative project gathered speech samples from non-mainstream, American English speakers residing in the southeastern United States in order to provide a more diverse perspective of motor speech disorders.   For over two decades, Jacqueline has been interested in how personal, physiological, and psychological factors affect people with aphasia, and aphasia rehabilitation. She has investigated topics such as stress, depression, mental health concerns, and how to assess their presence and influence. With her colleague, Ken Rice, she recently published the Simple Aphasia Stress Scale in the Journal of Speech, Language, and Hearing Research. The SASS is a single item self-report measure of acute stress in adults with aphasia.   Dr. Laures-Gore's work also investigated the power of laughter, mindfulness, meditation, spirituality, yoga, and integrative health practices for persons with aphasia. I am pleased to welcome Jacqueline to Aphasia Access Conversations today and look forward to talking with her about her clinical and research experience considering how integrative medicine can influence a person with aphasia and their rehabilitation, and the powerful effects that mindfulness, laughter, and yoga can have on life outlook, participation, and rehabilitation.   Welcome, Jacqueline. I appreciate your time today in talking with me about these fascinating and important topics.   Dr. Jaqueline Laures-Gore: I am very happy to be here, Janet, and very honored. I look forward to a very lively and fun conversation with you today.   Janet: Jacqueline I would like to start by asking you about the aspect of your aphasia research interests that includes important topics such as depression in persons with aphasia, stress, laughter, and spirituality. In fact, I believe you are among the first to write about the value of integrated health practice in aphasia. How did your career path and learning curve about aphasia take you to this line of inquiry?   Jacqueline: There's quite a bit of time that I spent with people with aphasia through my clinical work, and even early on before I became a speech-language pathologist and worked in a geriatric setting. There was a gentleman there who had aphasia and we did not really know how to communicate with him. He was very isolated. He sat by himself most of the time, was very alone. That image of him and what he must have been experiencing, and our inability to really know how to communicate with him, stuck with me over the years and definitely drove me toward a career in speech-language pathology, and specifically working with people with aphasia. Then, after becoming a speech-language pathologist, and working full time in rehab settings, it became very obvious that people with aphasia were more than the problems with phonology and semantics, and so forth. There was a bigger picture here, and there was oftentimes frustration. I watched and tried to provide some help to reduce frustration during some of the language tasks that people would be doing in clinic. But as I tried to look in the literature about well, what do we know about this frustration? What do we know about stress and the language system? What do we know about ways to facilitate language through the stress mechanism? What do we know about relaxation, and its effect on language, and so forth. All of those things really seem very under-explored in our aphasia literature. My curiosity definitely drove me to looking then, into a Ph.D., and having some great mentors who encouraged me to continue down this path of the fringe group. There weren't a lot of people who were very interested at the time in stress and thinking about what happens with the language system, or of mindfulness, meditation, and so forth. By far, I'm not the first to consider these things. McNeil and Prescott had a meditation paper, I think it was back in the 1970s. Cynthia Thompson had a paper on hypnosis, I think it was in the 1980s. There have been others, too.   Janet: I'm listening to you and thinking, we probably all had some sort of thoughts about this, as we see patients. I'm envisioning the patient that you saw in the geriatric center, we probably all have had patients like that. I'm impressed that you didn't forget, that you kept that in your mind as you moved forward. I think many of us didn't know what to do with it, didn't know how to think about this. Other things present themselves and we get busy with our worlds and our learning about phonology, or semantics, or syntax. It's hard to remember. I'm glad that you remembered and also, that you were brave enough to stay out there on that fringe, because not everybody is that brave.   Jacqueline: Oh, it's hard! It has been hard. It's gotten easier now, and hopefully, it will be easier for the next generation of researchers on this topic. Definitely my longtime collaborator, Rebecca Shisler Marshall, and I had difficulty getting things published. Thinking too, about research design, and approaching the topic with this particular group of individuals with communication disorders, it's a unique population. There's still a lot of growth regarding research design and establishing clinical trials, and we're just at the early phase of really investigating this.   I love that you were pointing out that oftentimes people forget that first person that they encounter with a specific communication disorder, and in this case with aphasia. I was 17, and I'm a few years older than 17 now, but I think, though, that for some individuals, there's a catalyst. It could be a personal experience, I hear lots of times when we have students coming through our program, “Oh, I had a family member who (fill in the blank) and had to have speech therapy”, or “I myself had to have some kind of speech therapy, and that's why I want to do this”. For me, at least, it was this individual that I was tasked to care for, and not really knowing how to care for that person. Definitely an emotional component there, and a feeling of responsibility.   Janet: I have visions of some of my patients when I was first starting out, boy do I wish I could have a do over!   Jacqueline: Oh yeah, obviously, I hear you.   Janet: This leads me to my next question. Your research has investigated some of the challenges that all of us, including persons with aphasia, experience such as depression or stress or mental health concerns, or coping with life's challenges, whether they're small challenges or large challenges. These words and concepts, I think they appear commonly in our conversations, and while people may believe they understand their definitions at a broad level, I believe that that may not be the case when we consider them in the context of treating our clients who have aphasia. How do you think about these concepts as they relate to persons with aphasia and their family members? And to our treatment programs? Could you give us some sort of guidance about how we might define and use these terms in our clinical work?   Jacqueline: Let's start with stress. Something that I have been talking a lot about lately, and especially with my doctoral student right now, is defining stress, defining anxiety, defining fear, and the differences between those three. When we think about stress, stress is really that threat in the moment. There are different ways in which we respond to that in-the-moment threat. One way is physiologic, and we have two biological arms of the physiologic stress response. One is the sympathetic adrenal medullary system, and the other is the hypothalamic pituitary adrenal axis. The first one, the sympathetic one, or the SAM, shows up with our heart rate and sweating, changes in our digestive system, and pupil dilation. The other one, the hypothalamic pituitary adrenal axis, that one will show up more with the changes in ACTH [adrenocorticotropic hormone] and downstream cortisol. All of those, though, have different effects on our body, and we can measure them with different techniques.   The physiologic stress response is adaptive, and stress is not always a bad thing. From an evolutionary perspective, having that stress response has been very beneficial for us, as humans. Now, when that stress response is consistently engaged, then it becomes problematic and oftentimes can become some type of illness or disease. In the short term in helps us to adapt to a potentially negative situation.   The other stress is more of a perceived stress. Perceived stress is the perception that there is a stressor, there is something in my environment that is creating this feeling of dis-ease. That perception of stress is reliant also on whether you feel you have, or you have coping resources. Do you have the support around you to help you deal with this stressor? For instance, do you have the financial means to help yourself, and some people rely on religious practices or spiritual practices to help them cope.   Anyway, so we have that self-perception of stress, and then we also have the physiologic stress, and the two do not have to match. Oftentimes, we can have somebody who reports themselves as perceiving stress and having a high level of perceived stress, but physiologically, it's not showing up. That makes it always a little bit tougher to study stress, and clinically to even assess stress. I'm not sure which is more important. Is it more important to not be perceiving stress? Or is it more important not to be feeling stress physiologically? I don't have the answer to that.   One of the things that's very exciting clinically though, is that there are more wearables now that can detect changes in heart rate, changes in skin conductance or skin response. I think that is going to be helpful eventually for clinicians who are trying to determine how stressful a certain situation is as far as a language task or a communication task.   We're also seeing more self-report measures of stress. We have the SASS, as you had mentioned, which is an acute measure. It's just one question and it's on a scale. Rebecca Hunting Pompon and colleagues created the Modified Perceived Stress Scale, which looks at stress over the last month, more of a chronic stress assessment.   You'd mentioned depression. We're seeing a lot more work in post stroke depression in people with aphasia in the last ten years or so. With that attention to the mental health of people with aphasia, we're seeing more scales that are at least being looked at, to help measure depression in people with aphasia, whether it be modifications of stroke depression scales that are already there but for the general population, or specific to people with aphasia. I see those as becoming more accessible clinically and us figuring out more about what we can be using in the clinic to look at depression.   Janet: This is fascinating, and I would love to spend hours talking with you in more detail about some of these measures.   In preparing to talk with you, I did a literature search of some of these terms like stress or depression, as they are linked with aphasia. I noticed that there were a few papers on the topic 30 or more years ago, but not many. In the last decade or so, as you mentioned, there has been an increasing number of papers that describe something about stress or depression, or how to measure it, or what to do about it. I think that this is a good trend, and it's certainly consistent with LPAA principles that seek to maximize the life experience of persons with aphasia. That said, I was challenged to draw consistent conclusions from the evidence that I saw. I'm wondering if you could summarize some of the findings from your research and experience and help us place this work in the greater context of evidence informed practice for aphasia.   Jacqueline: We know more about depression and functional outcomes, how post stroke depression can have a negative effect on functional outcomes in persons with aphasia. The problem is that the amount of literature is fairly small. Primarily, it's because that in the past, people with aphasia have been excluded from some of those studies. I see that changing now, where there is more inclusion of persons with aphasia. Then when it comes to stress, that literature is really, really just beginning, as far as empirical data to direct clinical care. In my work, what I've been able to show is that there are definitely some correlations, some associations between self-reported stress, and some aspects of discourse. I've been setting, at least most recently, picture description, for instance, or some type of narrative, and then looking at the discourse production to see if there's any kind of association with different aspects of self-reported stress. We found some things but nothing necessarily consistent. There's been some association with pausing, such as filled pause and unfilled pauses. We've seen that perceived stress can be either negatively or positively associated with those aspects of discourse. I think that right now, the evidence is a little unclear about what the effect of stress is on language.   I also always want to tell people that we really need to not always think about stress negatively. We need to think too about stress as an adaptive process. It may be that sometimes stress and language work together very nicely, and stress may give language a little boost. There was a 2019 paper that we had out looking at cortisol awakening response and diurnal variation, and we saw some differences between people with aphasia, and people without stroke and aphasia. The people who did not have a stroke and aphasia had a cortisol awakening response, which is that when we first wake up, the cortisol which is always in our body and is that very endpoint of hypothalamic pituitary adrenal axis, it releases glucose in our system and gives us sugar which gives us energy. For the most part, when people wake up, they have a lower level of cortisol. Then about 30 minutes later it starts peaking and then it continues to climb throughout the day. It's thought that that energy at the early onset of the day gives us a little bit of energy to get us going. In that 2019 paper, we didn't see that people with aphasia were following that pattern. That made us wonder if maybe there's an energy source that isn't fully functioning for people with aphasia, or at least isn't fully engaged in people with aphasia, and that could be contributing to language. There are a lot of things with that paper, too, that left us with more questions than answers. I think that's where we're at as a whole, with stress, with depression, with integrative health practices, is a lot more questions than answers still.   I do think that there's a sweet spot that maybe I won't, it will probably be maybe the next generation, I don't know if it'll stick around with my generation, or with me at least, but I'm trying to figure out what that sweet spot is for individuals. How much stress is too much stress, how much stress is just enough stress. Also, there's probably a big component of just inter- and intra-individual variability. What works for me, Janet, may not work for you. I think that's when clinical care really takes on that art piece, too, tuning into the person that you're helping and finding out what works for them.   Janet: I think you've said that so, so well. One of my fears is that this larger idea of the work that you're doing, people may see it as a bandwagon to jump on without really understanding the work behind it, the data behind it. So hearing you say, yes, we think there are some effects, but there's not enough evidence yet for us to say exactly what, in what way, for whom, all the time, under what conditions. Also bringing the ideas back into the art of the clinical work to pay attention to your patient, not just the responses that they're making linguistically, but also nonverbally, what they're showing you or telling you. Maybe take a step back to talk about, are they having a moment of stress? Or is something going on in their life that can be affecting their performance today? I think that's a good thing.   Let me turn a little bit in a different direction, because in addition to talking about and measuring stress and depression, your work is also focused on behaviors that can benefit all of us. Behaviors or activities such as mindfulness, yogic breathing, meditation, yoga. How did you become convinced that these activities can have a positive effect on a person with aphasia?   Jacqueline: Well, I don't know if I'm convinced. I am exploring.   Janet: Good point.   Jacqueline: It is yeah. I'm not convinced. I think, again, that there are differences between people and so that not everybody has a good experience with yogic breathing,  or is it maybe not appropriate for some individuals. Mindfulness can be very beneficial for people who are not necessarily aware of a certain behavior. But at the same time, when one becomes more mindful, there may be other emotions that come up. When you're introducing mindfulness into therapy you have to be aware that there may be some negative parts to introducing that and be prepared for some other emotions that may come up.   Stacy Silverman McGuire is a student of mine, and she did a thesis on laughter, yogic laughter. In that paper, we give a little qualitative piece to some of what she had studied and there were some people who just really enjoyed laughing and wanted to have more laughter in therapy. One person specifically commented that there's just not enough laughing that goes on in aphasia therapy. Another comment was that it was just weird; their experience was that this was kind of weird. People have different things that work for them, and some people don't like them. I think what we'll continue to find in this line of work is, again, that individual piece of what may work for some may not work for others.   When we look at some of these integrative health practices, many of them have roots in ancient medicines, whether it be ayurvedic medicine, traditional Chinese medicine, indigenous medicines, there's a long, long history. Some of the practices have become more secularized. Some of the practices have, I should say, religious roots to them, and in the western world have become a bit more secularized. For some people that we may be caring for, they may not be comfortable with some of these integrative health practices because of religious beliefs, or they may prefer more conventional medicine. So how's that, clear as mud?   Janet: It is more clear than mud, actually. Because it's what you said earlier. I don't think this is a fringe topic any longer, but it certainly is an unexplored topic. It's messy, it's difficult to examine. You talked about your challenges in thinking about research design, for example. And then, of course, there's the personal comfort with any aspect of this. It's not just the person with aphasia, but I'm thinking about if you're a clinician, how do you get to a comfort level where you can talk about mindfulness, or talk about spirituality? If you're not comfortable, then it's probably not a good thing for you to do, because your level of discomfort will spill over onto the client, who will certainly be aware that you're not comfortable talking about this. That may affect the interaction.   Do you have any thoughts or any advice or guidance you might give to clinicians as we think about this large, messy topic, if you will, and how we might be thinking about incorporating any of these things into our worlds?   Jacqueline: Yeah, I think a really good aspect of all of this is clinician comfort, and thinking about clinician comfort, even getting away from just the standard, traditional model of therapy, where we show a picture, and then we work on naming that picture. When there's been the movement since the late 1990s of the Life Participation Approach to Aphasia, and getting outside of just the impairment focus, and looking at life participation, and so forth. That goes along with A-FROM and all of that wonderful work that people before me have done. Clinicians had to feel comfortable with that, too, of looking at the bigger, broader picture. Now this adds another dimension as well, that I think feeds in very nicely to LPAA, and A-FROM and so forth.   When we think about things like meditation, awareness, even just doing something, not necessarily labeling it as meditation, but labeling it, as “Let's just focus on your breath for a moment. Slow down, and just breathe.” You can have a few deep breaths, and help that person get back into a state where maybe they are not over aroused with their stress system.   As far as the religion and spiritual aspect, it's part of one's culture. As we work with people who are culturally diverse, we are as speech-language pathologists, really responsible for becoming more comfortable with acknowledging all of the aspects of culture, which includes religion and spirituality. One's religious practices can have an immense effect on their perspective about therapy, about aphasia, about recovery. That is an area that we're learning more about specifically with aphasia. When we look at religious practices and healthcare in general, and there's a much larger literature out there than looking here, just within aphasia rehabilitation. So, again, I think we're going to be learning a lot more in the coming years about that aspect. But again, it is recognizing an important piece of one's culture.   I feel like I'm kind of just like rambling on.   Janet: Well, first of all, you're not rambling on. It's a winding road topic, if you will, it's not a straight-line topic. There are perspectives from all over that we have to consider. As you were talking, part of what I began to think was that there's a difference between acknowledging and respecting someone else's beliefs or spirituality or their culture, even if you don't understand it, or perhaps you don't personally practice it or personally agree with it. But you acknowledge it, you accept it, and put yourself in a comfortable position so that you can have a clinical relationship with the patient, and then achieve the goals that you want. That's what it seems to me like you're saying, or you're advocating for?   Jacqueline: Yeah, I think the hit the nail on the head.   Janet: Let me ask you a little bit more about your work on stress. You talked about two terms, self-reported perceived stress, and then stress, or maybe physiological stress. Could you define these terms a little bit more deeply, and give us some examples of how they appear in the lives of persons with aphasia, and without aphasia?   Jacqueline: Well, physiologic stress, again, can manifest differently throughout the body, because of the two different biological arms of the stress response. There is such a huge literature now on all of the stress-related illnesses that we have here and globally, and of course, stressors are different. They can be related to family situations, they can be related to income level, they can be related to health, political issues, wars. There can be the big things. Then that physiologic stress may be engaged with the smaller day to day things, such as a coworker, that is really hard to deal with, or a situation with a spouse or a sibling, or so forth.   And then there's the perception of stress, which I think is so incredibly important. Sometimes you may, Janet, have met somebody, or maybe you yourself are that person, who doesn't seem to get too worried about things. They seem to have a perspective that, “I can handle this, I got this, It'll turn out just fine”. They can kind of roll along with life. Then there are individuals where the cup of water spills and it's the end of the world. There's concern about little things. How we perceive stress is based on, I think, early life experiences. It's based on what we come into this world with and the modifiers in the environment, and then from there, form those who perceive stress and those who don't perceive a lot of stress. It gets back to coping. Some individuals have the ability to cope much better than other individuals and have a lot more to rely on in times of stressful events than others?   Janet: I think the coping that you mentioned is so important. A big part of our job is probably supporting that throughout our treatment, the rehabilitation program, so the patient can continue to cope with the challenges of aphasia.   Jacqueline: I agree, finding out how an individual's coping. We've been working on trying to develop a coping questionnaire for people with aphasia for a few years now. We're data collecting with that and hoping to have that available to clinicians. Right now, we don't have one that's aphasia friendly. We don't have a coping questionnaire to find out how are people coping? What are they relying on? Are they relying on maladaptive behaviors to cope? Are they drinking a lot? Are they abusing other substances? Or, are they reaching out to friends? Are they getting some exercise. There are some very positive ways of coping, and there are some natural, healthy ways of coping. Finding that out is very important clinically, and how do we do that? My answer is we need to develop a good questionnaire that's psychometrically valid, and so forth. Until then, clinicians can definitely ask, and use supported communication techniques, I should say, in order to get those answers to, “What do you do when you get really frustrated?”, and then have some pictures to point to perhaps, or words to point to whatever that person is able to best communicate with?   Janet: That's a great idea.   Jacqueline: Yeah. First of all, understand what their coping mechanisms are and strategies, and then help them to develop more or, through the Life Participation Approach, how do we help them to have access to those things that might help them to cope? If they were really engaged in group activities prior to their stroke and living with aphasia, then how can they get back to that? How can we have them engage again?   Janet: Well, you've just actually given a partial answer to the next question I want to ask you, which is how we can, as clinicians, incorporate some of these positive experiences or helpful experiences into our clinical activities. The thing is, like many of us, we may not be experienced at, say, incorporating mindfulness or yoga into our own lives, not to mention putting them into treatment. And so we likely have no idea how to start. Based on your research, and again, on your clinical experience, what advice can you give our listeners who may wish to add some of these ideas or some of these activities to our practice? Where do we start?   Jacqueline: I think getting back to that comfort level. What is the clinician comfortable with? And as you had pointed out, that if you're don't have that internal self-comfort of “I can have the person that I'm working with, kind of slow down, take a deep breath, maybe take four breaths in and out slowly”. If I don't feel comfortable doing that, then don't do it, because it's going to come off kind of odd. Having some comfort, whether it be practicing with oneself, or practicing with others before you get into therapy, I think that's really important.   Janet: There are practices such as yoga, for example. I think if you're going to incorporate yoga, you have to know what you're doing. You have to understand yoga, or you have to be able to do it or to instruct it. If you're not at that instructor level, there can be problems in the therapy session. So you wouldn't want to incorporate yoga, unless you are really skilled at it and know what you're doing. But there have to be some positive practices that are relatively easy to incorporate, maybe laughter or even a discussion of spirituality. I'm thinking about, sort of, the term Monday morning practice. What can clinicians do on Monday morning, without having to do a lot of learning about yoga or practicing yoga? What can they do on Monday morning, when they see clients that might help them begin on this path of integrative health practices or thinking about the other aspects of our aphasia rehabilitation? Does that makes sense?   Jacqueline: Yeah, yeah. Yeah. It is the “rubber hitting the road” sort of thing to all of this?   Janet: Exactly.   Jacqueline: There is adaptive yoga that Amy Dietz and Laura Bislick and colleagues had published in AJSLP, a couple of years ago. There are some postures that are presented that are accessible to clinicians. So they could look at those. There are some adaptive yoga techniques that are clinically accessible. Some very simple breathing activities. These are not complicated. It is just a matter of “Close your eyes; and for a moment, go ahead and take a nice deep breath in and out.” Recognizing that the breath really anchors everyone to the moment. When you have an individual that you're working with that seems to be over stressed and it's working against them in what you're trying to have accomplished in your therapy session, taking a moment, closing the eyes, and breathing will bring them back to that moment, moment of relaxation or to the present where they can approach the task with a different perspective.   Janet: It makes so much sense to me and even just doing it with you - for those few seconds, closing my eyes taking a deep breath, I felt a difference in my own self, just in the in the course of this conversation. I can imagine that it will produce a similar effect, resetting, if you will, the clinical environment, resetting the goals, and reducing perhaps any negative perceived stress that the patient might have. If they're thinking that they're not doing what they're supposed to, or they're not meeting goals, or they're having troubles. It's great idea.   As we bring this conversation to a close Jacqueline, are there any other pearls of wisdom or lessons learned in thinking about the influences of integrative health behaviors on language and communication, rehabilitation, not just for the people with aphasia, but also for their families, their friends, and for clinicians,   Jacqueline: I think lessons learned is keeping an open mind and really approaching aphasia, with the perspective that there is the language impairment, but there's also a bigger picture here. There are different approaches to recovery that can stem from traditional ancient medical beliefs that may help us during this modern time that we're in. I think keeping an open mind, but yet, maintaining some skepticism, too. We do want to continue to have science guide our therapies, as well as our clinical experience. It can be hard to have a convergence of the two at times. But I think that we can't ignore that there is more than just the language impairment going on.   Janet: We cannot ignore it. You're right, especially if we are proponents of the LPAA model, which incorporates the whole individual in living their life. I agree with everything that you've said and I'm finding myself thinking of that balance, too, between there is some stress that can be good, but don't have too much stress, because you don't want it to be a bad thing, and keep an open mind but have healthy skepticism. All of that's a good thing for all of us to practice.   Jacqueline: Not easy, it's hard to do, but it's a good thing.   Janet: Today's conversation has been, for me at least, thought provoking and enlightening and I hope it has been for our listeners as well. Realizing that additional work is necessary to provide an evidence informed foundation for incorporating many of the activities such as yoga practice, or mindfulness into aphasia rehabilitation, I believe that this is an avenue well worth pursuing in both clinical and research activities. I would like to thank my guest, Dr. Jacqueline Laures-Gore for sharing her thoughts and experience in this important area of clinical research and practice, Jacqueline, I greatly appreciate you taking the time to speak with me today, and for providing our listeners with the foundation and how to think about integrative medicine.   Jacqueline: You are very welcome. This was very fun. Thank you, Janet, for asking me.   Janet: Oh, you're welcome.   I would also like to thank our listeners for supporting Aphasia Access Conversations by listening to our podcasts. For references and resources mentioned in today's show, please see our Show Notes. They are available on our website, www.aphasia.access.org. There you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. For Aphasia Access Conversations, I am Janet Patterson and again, I thank you for your ongoing support of aphasia access                       References Aphasia Access Conversations Episode #98: An Aphasia Journey Through Linguistics, Neuroplasticity, Language Treatment, Counseling, and Quality of Life: A Conversation with Chaleece Sandberg Episode #95: Supporting Psychological Well-Being: A Conversation with Jasvinder Sekhon Episode #89: Aphasia is a Complex Disorder: Mental Health, Language, and More – A Conversation with Sameer Ashaie Episode #69: Motivation and Engagement in Aphasia Rehabilitation: In Conversation with Michael Biel Episode #67: Considering Depression In People Who Have Aphasia and Their Care Partners: In Conversation with Rebecca Hunting Pompon   Scholarly papers Bislick, L., Dietz, A., Duncan, E. S., Garza, P., Gleason, R., Harley, D., ... & Van Allan, S. (2022). Finding “Zen” in Aphasia: The benefits of yoga as described by key stakeholders. American journal of speech-language pathology, 31(1), 133-147. https://doi.org/10.1044/2021_AJSLP-20-00330 Hunting Pompon, R, Amtmann, D., Bombardier, C., & Kendall, D. (2018). Modifying and validating a measure of chronic stress for people with aphasia. Journal of Speech, Language and Hearing Research, 61(12):2934-2949. https://doi.org/10.1044/2018_JSLHR-L-18-0173  Kagan, A., Simmons‐Mackie, N., Rowland, A., Huijbregts, M., Shumway, E., McEwen, Threats, T., & Sharp, S. (2008) Counting what counts: A framework for capturing real‐life outcomes of aphasia intervention, Aphasiology, 22(3), 258-280. https://doi.org/10.1080/02687030701282595 Laures-Gore, J., Cahana-Amitay, D., & Buchanan, T. (2019). Diurnal cortisol dynamics, perceived stress, and language production in aphasia. Journal of Speech, Language, and Hearing Research, 62, 1416-1426. https://doi.org/10.1044/2018_JSLHR-L-18-0276 Laures-Gore, J., & Rice, K. (2019). The Simple Aphasia Stress Scale. Journal of Speech, Language, and Hearing Research, 62, 2855–2859. https://doi.org/10.1044/2019_JSLHR-L-19-0053 Laures-Gore, J., Russell, S., Patel, R., & Frankel, M. (2016). The Atlanta Motor Speech Disorders Corpus: Motivation, Development, and Utility. Folia-Phoniatrica-et-Logopaedica 68(2):99-105. https://doi.org/10.1159/000448891 McGuire, S.S., Laures-Gore, J., Freestone, E.J., & van Leer, E. (2021). Simulated laughter, perceived stress, and discourse in adults with aphasia, Aphasiology, 35:9, 1207-1226. https://doi.org/10.1080/02687038.2020.1787944  McNeil, M., Prescott, T., & Lemme, M. (1976). An application of electromyographic feedback to aphasia/apraxia treatment. Proceedings of the Clinical Aphasiology Conference, 151-171. http://aphasiology.pitt.edu/21/1/06-11.pdf Thompson, C.K., Hall, H.R., & Sison, C.E. (1986). Effects of hypnosis and imagery training on naming behavior in aphasia. Brain and Language, 28(1), 141-153. https://doi.org/10.1016/0093-934x(86)90097-0   urls Aphasia & Motor Speech Disorders Lab, Georgia State University  https://education.gsu.edu/csd/csdresearchoutreach/aphasia/?fbclid=IwAR1x5-CQxmiXkV4ZVcDbbt5oZmYw5VhZLKsmmw62xmh9XyC6O9sEzqV0mvU#stress-and-aphasia and https://www.facebook.com/gsuaphasia

Interviewer info Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic conditions. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer. In this episode, Lyssa Rome interviews Kristin Schaffer Mendez about her work on counseling for people with primary progressive aphasia and their families.   Gap Areas This episode focuses on Gap Area #6, insufficient attention to depression and low mood for people with aphasia across the continuum of care.   Guest info   Dr. Kristin Schaffer Mendez is a speech-language pathologist and assistant professor at the University of St. Augustine in Austin, Texas. Prior to entering academia, she worked in several clinical settings, including inpatient rehabilitation, home health, and private practice. Dr. Mendez's experience as a clinician has inspired her research, which is centered upon examining and addressing psychosocial factors in acquired neurogenic communication disorders through patient-centered and care partner-inclusive treatment paradigms, including counseling, support groups, and the use of telerehabilitation platforms.   Listener Take-aways In today's episode you will: Learn about some of the psychosocial factors that people with primary progressive aphasia may face. Understand how speech-language pathologists can provide both educational and personal adjustment counseling for people with PPA. Describe a cognitive behavioral approach to personal adjustment counseling for people with PPA. Edited show notes Lyssa Rome Welcome to the Aphasia Access Aphasia Conversations podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California, and I see clients with aphasia and other neurogenic communication impairments in my LPAA-focused private practice. I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.   I'm today's host for an episode that will feature Dr. Kristin Shaffer Mendez. Dr. Schaffer Mendez is a speech language pathologist and assistant professor at the University of St. Augustine in Austin, Texas. Prior to entering academia, she worked in several clinical settings, including inpatient rehabilitation, home health, and private practice.   Dr. Schaffer Mendez his experience as a clinician has inspired her research, which is focused on examining and addressing psychosocial factors in acquired neurogenic communication disorders through patient-centered and care partner-inclusive treatment paradigms, including counseling support groups, and the use of telerehabilitation platforms. In this episode, we'll be focusing on her research on counseling for people with primary progressive aphasia.   Dr. Kristin Shaffer Mendez, welcome to the Aphasia Access podcast. It's great to have you here.   Kristin Shaffer Mendez  Thank you so much for having me. It's wonderful to be here.   Lyssa Rome  So I wanted to get started by asking you a question that we often start with, which is whether you have any “aha” moments, so experiences that were pivotal for you in your work as a clinician or as a researcher?   Kristin Shaffer Mendez Yeah, you know, I think throughout my career, there have been a series of “aha” moments. If I think through my career, I've had several different stages. So initially working clinically, as a speech language pathologist, as I was partnering with patients with all different types of communication disorders and their families, I quickly realized that we weren't going to address the specific speech language goals if I didn't first acknowledge and check in with these individuals and get a sense of their general wellbeing, and a sense of if they were suffering, if they were grieving, if they were going through or processing something specific. I did have some didactic training as a student and counseling—not a lot—and I noticed when I would try to find evidence-based resources, I wasn't finding a lot of disorder-specific counseling information.   Fast forward a few years later, I was working as a research speech language pathologist at the Aphasia Research and Treatment Lab in Austin, Texas. And I was working primarily with individuals with PPA, and sometimes I would notice, and in the midst of a speech language treatment session, they would say something maybe under their breath, or maybe in frustration, like, “Oh, my dumb brain,” or “ I'm such an idiot.” And I was thinking, oh, goodness, if this is what's coming out of their mouth, I only wonder what what's happening behind the curtain. And if we were to look at the inner workings of their mind, what their self talk would look like, and how critical it might be. Then I was thinking, “Okay, now what what types of tools might I be able to provide for these individuals so that they can minimize that critical voice, and be more positive, be more adaptive.” And so that leads me to to my line of research.   Lyssa Rome And that also leads, I think, straight into the gap areas. So in this podcast, we've been highlighting those gap areas that were identified in the State of Aphasia Report by Nina Simmons Mackie, which was published in 2018. And I think, in this episode, what you've described so far, and what we're going to be talking about, really focuses in on gap area number six, which is insufficient attention to depression and low mood for people with aphasia across the continuum of care.   You described some of the kinds of self-talk that you were hearing people say. I'm wondering if you could tell us a little bit more about the kinds of psychosocial issues that people with primary progressive aphasia typically experience. And I guess I also wonder if this differs at all from what people with post-stroke aphasia experience?   Kristin Shaffer Mendez So individuals with primary progressive aphasia, the psychosocial factors that they're facing can range from feelings of low confidence, to social isolation, withdrawal, reduced participation in life activities to a diagnosis of mood and or anxiety disorder. So similar in many ways to what individuals with stroke-induced aphasia may be facing. But the difference here is that when we look at the prognosis and the trajectory of life for individuals with PPA, in contrast to individuals with stroke-induced aphasia, who can look at a future of improved communication functioning, or maybe an plateau in communication status, for individuals with primary progressive aphasia, their trajectory is that of decline. And so these individuals are at particular risk for facing these psychosocial threats and for these factors to change over time as well.   Lyssa Rome  So given some of these needs that you've just described and the risks that you've described, how can we as speech language pathologists provide counseling in our treatment for people with PPA?   Kristin Shaffer Mendez   Yeah, so there's there lots of different avenues that we can go down in terms of providing counseling, and really what I'll say is, this is going to be person-specific, and we'll tailor our counseling to the needs of an individual, session by session.   There are two main camps in terms of counseling within our field more broadly, in communication sciences and disorders. And this I follow from Dr. David Luterman, of course, one of the long-standing advocates and pioneers for the integration of counseling in our field. He cites two main forms of counseling. One is informational counseling, otherwise known as psychoeducation, or educational counseling. This is where we're providing disease-related information. And then there's personal adjustment counseling. This is going to be more emotion-centered. This is where we are directly addressing those thoughts, feelings, and behaviors underlying the diagnosis. So I really do believe that we can toggle between the two, and that our patients can and may benefit from both forms of counseling.   As a field, research has shown that speech language pathologists tend to feel more comfortable in providing the educational or the informational counseling relative to personal adjustment counseling, and they're also more likely to have been provided with didactic education in that information-centered counseling. But this is this is where my work comes in. And this is where I'm really motivated and invested in in making changes.   I'll talk some more about personal adjustment counseling. So this can range from micro-counseling skills, that are more general, and that are those soft skills that will help to foster a strong therapeutic alliance with our patients. So actively listening, listening without having an agenda of what we're going to say next, or thinking about the time and redirecting back to the speech language treatment task. Having moments of therapeutic silence, where again, we're not jumping in to fill empty space, but pausing a beat, and letting the patient continue to talk, or sit for a moment and process. Paying attention to our body language, the nonverbal way that we're communicating, leaning in, nodding, validating, affirming through the way that we are presenting. And then listening to what our patients are saying, and then thoughtfully summarizing. So letting our patients know that they are seen and heard and validated.   So those are, those are microcounseling approaches, and we can provide that anytime with any of our patients or our care partners. But then there are also specialized counseling approaches, and that's where my research really delves into further that are going to require more training and a specialized set of skills.   But really, in terms of our opportunities to provide counseling that can really be organically woven into our interactions from the very initial assessment throughout treatment, checking in with our patients at the beginning of sessions, at the end of sessions, and just being being aware, being observant, and noticing if there are moments when our patients seem to be undergoing a moment where they want to talk and where we might need to pause. And use that moment as as a teachable counseling opportunity. And not feel as though we need to stringently adhere to our speech language treatment sessions, or that we have to have some formal time in our sessions that's set aside for counseling.   Lyssa Rome    It almost sounds like you're describing approaching our treatment sessions with a counseling mindset that sort of is woven throughout. And you alluded to more specialized programs that we can also use. I know you've developed a cognitive behavioral therapy program for people with PPA, and I'm curious about that program, and about why you selected CBT. And maybe if you could define it a little bit?    Kristin Shaffer Mendez Absolutely. Yes. So cognitive behavioral therapy, or CBT, is one of the most widely researched and popular forms of psychotherapy. And it trains individuals to examine the connection amongst thoughts, feelings, and behaviors in order to identify, assess, and respond to maladaptive or unhelpful thoughts to optimize mood and behavior more broadly. And also CBT has been modified for individuals with a variety of diagnoses, including those with neurodegenerative disorders, such as Alzheimer's dementia. So when I was considering different psychotherapeutic approaches to adapt, it really seems like CBT could could be a great starting point. There's really limited research in general about adapting counseling approaches for this population.   So within this treatment program, there were both opportunities for dedicated counseling, and that counseling closely followed the traditional form of CBT. However, the sessions were oriented towards communication-centered challenges. And so within that, there's opportunities to check in on an individual's mood, and talk through a home practice exercises from the last week, check in on that, and talk through, “Okay, so what what types of communication difficulties came up this week? And then how we should we prioritize our time together? What do we need to work through?” Then working through specific challenges using aphasia-modified CBT approaches and, and then ending with a feedback component as well. So that's basically the gist of a traditional CBT approach, as a CBT session. So there was that component, but also, these sessions were aphasia-modified in that aphasia-friendly written and visual supports were provided as needed to ensure comprehension of these key CBT concepts that could be new new terminology for any individual who's entering a counseling dynamic. We just wanted to make sure that these individuals were provided with that support.   But so in addition to the more structured counseling, there were also opportunities organically within the speech-language portion of the treatment sessions, where if an individual was demonstrating frustration or emotional distress, or they were saying statements that were maladaptive in nature, then these were teachable counseling moments where CBT techniques were used within the session.   Lyssa Rome So can you tell us a little bit more about the clients goals and also about what you found?   Kristin Shaffer Mendez Yes, absolutely. So, first, I want to contextualize this research and mention that it is considered pilot research. So this is early phase, early stage research, where we are looking at answering the question: Is this novel intervention feasible and is it acceptable to patients? So we're obtaining information to see if patients were satisfied by the treatment, if this was feasible for a speech language pathologist to implement. What we're finding with a small cohort of individuals, so we've published one paper in the American Journal of Speech Language Pathology with our very first pilot participants, that was just a single case experimental design. We have nine additional individuals, three per PPA variant, who have participated in our second phase of pilot research and we have a manuscript in preparation for that stage. But what we're finding today is that this intervention is acceptable. And it's it's feasible. We were also really intentional in selecting and recruiting and enrolling individuals who did endorse that, in light of their PPA, of their communication challenges, that they were facing threats to their emotional well-being and that they were interested in participating in an intervention that included counseling.   So I think that's one important point to make when looking at the individuals who have undergone this intervention. Then with regard to goals, that was really individual for each person. It ranged from participating more in prayer groups to calling family members or friends instead of emailing them or not picking up the phone out of a sense of a fear of what would happen during the conversation. And yes, so these goals were all created collaboratively with with me as the clinician and with the participant, to really determine what was going to be meaningful and valuable in these individuals lives and what to work towards, collectively and in our time together.   Lyssa Rome That makes so much sense and I can imagine how addressing some of the psychosocial challenges, as you have described them, would would allow people to participate in the ways that you were just detailing.   I'm curious about.. you mentioned earlier on, that we don't always get a lot of training as SLPs in specific counseling approaches, and often are more comfortable, I think, with the educational counseling piece of things. So what kind of training would clinicians need—both future clinicians and current clinicians—in order to use this type of approach with our clients?   Kristin Shaffer Mendez Yeah, that's, that's a great question. And that's what we're continuing to examine, as we continue to move through our phases of research and so we've now completed pilot research and in the future we're looking at efficacy research and and later on down the line, I can say more generally, what I envision is that these types of counseling approaches and the evidence base wherein, that we discover, will then be incorporated more universally in graduate school education. But not so that, necessarily, students are going to graduate being able to implement and provide these specialized counseling approaches, but so that they have a sense of the theoretical underpinnings and the basic constructs of these approaches, and even thinking about patient candidacy—who might be appropriate and who might benefit from these approaches. But then in the future, I can see there being continuing education opportunities similar to LSVT, the Lee Silverman approach, where maybe it's a two-day training, for example, and intensive training where individuals are provided with a lot of hands-on experiential learning, so that they are equipped with those tools that they can then implement with patients.   Lyssa Rome  It brings to mind another question that I have, which I think is often on my mind anyway, when I think about counseling approaches, which is: We know that a lot as you've been describing, a lot of anxiety or mood related challenges are directly related to communication-specific disorders, in this case, PPA. So as we think about the needs, the psychosocial needs of people with PPA, given that so many of those needs are directly related to this progressive communication disorder, how do we know what's within our scope, and when we might consider referring to a mental health professional, for example, if the needs are greater than what we are able to meet on our own?   Kristin Schaffer Mendez That's a great question. And I do believe as speech language pathologists we're uniquely equipped to providing counseling. We are the communication experts. And we possess specialized skills in understanding individuals with communication impairments, and helping them express themselves. And this is something that a lot of licensed mental health professionals may not have the background training and experience in.   So with regards to determining when to potentially refer, so it's completely normal, we would argue, that individuals facing a neurogenic communication disorder, such as PPA will, will likely experience grief and loss and suffering as they're processing their diagnosis and navigating their days. But if we have a sense that they are presenting with a mood and or anxiety disorder that may be undiagnosed, then certainly the first step is to administer a mental health screening or an anxiety disorder screening, there are several available online that are free—the Personal Health Questionnaire, the Generalized Anxiety Disorder Scale, for instance. And then if the results do show that there is the potential presence of mood or anxiety disorder, then having having a conversation and coming from a place of care and concern and letting our patient know that we do have concerns that these individuals may be presenting with challenges that go beyond what we are able and equipped to provide. And then from there, looking into finding mental health professionals within the community, so that we can give that warm handoff and engage in interprofessional collaboration, if need be, if the mental health professionals maybe don't have experience in treating a client with PPA or aphasia, for example.   Lyssa Rome  And that's, I think, a perpetual challenge, right? It's finding those people who can support clients with mental health needs beyond what we're able to help them with—people who have those those kinds of communication skills and experience.   Kristin Schaffer Mendez And if I could just say one other thing as well. When I said a warm handoff, I don't necessarily mean that we stop treating our patient or that we don't continue to provide counseling. It's just we want to make sure that we're staying in our lane and providing counseling as it relates to the communication challenges. But not going beyond and stepping outside, especially if there's some type of mental health disorder that needs to be treated and managed more broadly.   Lyssa Rome That totally makes sense to me. It's working with the mental health counselor and not instead of.   So we know that people with PPA will continue to experience declines in their language functioning as their disease progresses. I'm wondering about how the counseling needs change over time and how we can meet their needs over time, as their disease progresses?   Kristin Shaffer Mendez   Yes, that's that's a great question. And that's really important too, is that we demonstrate flexibility, both in the counseling that we provide and in the speech language interventions we provide that's really yoked to and sensitive to a person's presentation.   So Dr. Ian Kneebone has published work pertaining to the provision of CBT for individuals who have survived a stroke. And I think that the principles that he discusses would be really applicable for individuals with PPA or other communication impairments as well, in that we must demonstrate flexibility, that is yoked to an individual's cognitive and communication presentation. And so if, for example, an individual, we'll say with PPA, is presenting with a more progressed clinical profile, then we would consider using language that's more concrete versus more abstract. We would also consider the provision of additional environmental supports, or multimodal communication, for example. And we would also want to include our care partners, if they are amenable to participating, as that can then help to ensure facilitation and implementation of the strategies outside of the therapy sessions.   Lyssa Rome    That brings me to another question, which is that you had mentioned earlier in a study that hasn't been published yet, you had people with each variant of PPA involved in your research. And I'm curious about sort of, in addition to thinking about disease progression, if there are also aspects of the variants that clinicians should be aware of in terms of their neuropsychological or behavioral features. And how would we want to think about sort of varying strategies based on those features? Or what to expect even based on those features?   Kristin Shaffer Mendez Absolutely, yes, that's a great question. And I think that being aware of the potential presence of these neuropsychiatric and behavioral features is important in general, because this can also influence the speech-language interventions we provide. There has been research that have has shown some general patterns that we might expect to see across the PPA variants. So for example, apathy has been found in some research studies, and then other other features that are more specific to a specific PPA variant. So, for example, with the semantic variant of PPA, we may see loss of empathy, mental rigidity, compulsive behaviors, disinhibition. With the logopenic variant, we may see agitation, anxiety, irritability, and with the nonfluent, agrammatic variant, we might also see irritability, and these individuals also often may present with depression. So you know, those are those are some some general trends that we've seen. But again, we have to look at each person as an individual.   But in terms of the counseling that we provide, yes, I think that if we have an individual that, for example, has the semantic variant of PPA, and they're presenting with mental rigidity, then thinking about what types of counseling may resonate with them, or what types of counseling may need to be provided to family members and care partners will be important to consider. So for example, with with cognitive behavioral therapy, which is really hinged upon cognitive restructuring, and taking thoughts that are unhelpful or maladaptive and monitoring and adjusting them so that they become more helpful and adaptive. If somebody presents with mental rigidity, then this type of intervention may be met with resistance.   That said, for the very small sample size of individuals I've worked with, that hasn't always necessarily been the case that that these individuals were not open to engaging in a counseling approach like this. Really small sample sizes—we really can't make any sweeping statements at this point in time. But I think that the key is that we are aware of these features, and that we are providing counseling and educational support and that we are flexible. And sometimes, an approach may not work in general, sometimes it may not work a specific day, and so this really requires trialing and error and experimentation and openness on the part of both the clinician and the client.   Lyssa Rome That leads me actually directly into a question that I wanted to ask as we wrap up. I think it is so important to meet people where they are on a specific day, and to be really aware of who they are and what they're experiencing as an individual—I think that's pretty core to many of our, all of our practices as speech language pathologists. I wanted to wrap up by taking a step back and asking you a little bit more about why this is so important. You touched on it in the beginning, but how does counseling support a life participation approach for our care for people with PPA?   Kristin Shaffer Mendez Yes, so the orientation with counseling is within the context of a whole person who lives a rich, dynamic life. And these individuals are unique, and they have different values and goals. And they do have a communication impairment, but that's just one part of their life, and doesn't define them as a person. And so within the work that we do, in providing counseling, we are honoring these individuals and and that full landscape of their life. And we're equipping them with skills so that they can cope with the challenges that they are facing with their communication challenges. So that they can continue to live a meaningful life that aligns with their values and their goals for their time on this earth.   Lyssa Rome What I'm moving and beautiful way to wrap this up. Dr. Kristin Shaffer Mendez, thank you so much for talking with us. I really appreciate it. It's been a pleasure.   Kristin Shaffer Mendez Oh, it's been a pleasure as well. Thank you so much for the opportunity.   Lyssa Rome Thanks also to our listeners. For the references and resources mentioned in today's show, please see our show notes. They're available on our website, www,aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials and find out at the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access. For Aphasia Access Conversations, I'm Lyssa Rome.       Twitter: @Schaffer_SLP References and Resources Twitter: @Schaffer_SLP   Luterman, D. (2020). On teaching counseling: Getting beyond informational counseling. American Journal of Speech-Language Pathology, 29(2), 903–908. https://doi.org/10.1044/2019_AJSLP-19-00013 Schaffer, K. M., Evans, W. S., Dutcher, C. D., Philburn, C., & Henry, M. L. (2021). Embedding aphasia-modified cognitive behavioral therapy in script training for primary progressive aphasia: A single-case pilot study. American Journal of Speech- Language Pathology, 30(5), 2053–2068. https://doi.org/10.1044/2021_AJSLP-20-00361 Kneebone, I. I. (2016a). A framework to support cognitive behavior therapy for emotional disorder after stroke. Cognitive and Behavioral Practice, 23(1), 99–109. http://doi.org/10.1016/j.cbpra.2015.02.001   Screening tools and citations: PHQ-9: K. Kroenke, R.L. Splitzer, J.B. Williams. “The PHQ-9: validity of a brief depression severity measure.” Journal of General Internal Medicine. 16(9): 606-13. September 2001. Retrieved July 9 2018. https://www.ncbi.nlm.nih.gov/pubmed/11556941.   GAD-7: Spitzer, R. L., Kroenke, K., Williams, J. B. W., & Löwe, B. (2006). A brief measure for assessing generalized anxiety disorder: The GAD-7. Archives of International Medicine, 166(10), 1092–1097. https://doi.org/10.1001/archinte.166.10.1092  

Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Ellen Bernstein-Ellis, Program Specialist and Director Emeritus for the Aphasia Treatment Program at Cal State East Bay and a member of the Aphasia Access Podcast Working Group. AA strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Davetrina Seles Gadson. We'll discuss her work involving how brain lesion characteristics may intersect with aphasia recovery, race, and psychosocial factors, as well as issues involving health-related quality of life assessments. Dr. Davetrina Seles Gadson is the first Black-American to graduate with a Ph.D. in Communication Sciences and Disorders from the University of Georgia. She is a neuroscientist and certified speech-language pathologist with expertise in adult neurological rehabilitation and patient-centered outcomes. She currently is Research Faculty, in the Department of Rehabilitation Medicine, at Georgetown University. Dr. Gadson's research focuses on the influence of health disparities in minority stroke survivors with aphasia and the effect of such disparities on brain functioning, aphasia severity, and health-related quality of life. Most rewardingly Dr. Gadson is the co-host of “Brain Friends”, a podcast for neuro nerds and stroke survivors to talk about aphasia advocacy, language recovery, and community. Listener Take-aways In today's episode you will: Learn how health disparities may influence aphasia outcomes and why more research is needed   Discover why "Brain Friends" is another podcast you'll want to add to your playlist.   Gain practical tips on how to build confidence in intercultural interactions with your clients   Hear how health-related quality of life (HRQL) measures can help  inform your clinical practice   We'd like to recognize Kasey Trebilcock & Amanda Zalucki, students in the Strong Story Lab at CMU, for their assistance with this transcript. Show notes edited for conciseness Ellen Bernstein-Ellis (EBE) EBE: I am so excited to have a fellow podcaster here today. Thank you for being here. And I just listened to the January Brain Friend's episode. It was great. So I hope our listeners will check it out too. I want to also give a shout out to your consumer stakeholder and co-podcaster, Angie Cauthorn, because she was a featured guest on episode 70, in June of 2021, as we recognized Aphasia Awareness Month, and you just spoke with her about aphasia types and aphasia conferences, and you gave a big shout out to CAC and you gave clinical aphasiology conference and you also gave a big shout out to the Aphasia Access Leadership Summit. So really important conferences, I think that stimulate a lot of discussion and values around patient centered care. And your Brain Friends podcast just has a great backstory. So why don't we just share about how that all started? Where's the backstory to that, Davetrina? DAVETRINA SELES GADSON: Thank you so much for having me. This is such an exciting opportunity. So, Brain Friends started with myself and Angie. We were on the National Aphasia Association's Black Aphasia group call and I just loved her energy. She reached out to me after we finished that group call, and we just started talking. Our conversations were so informative, and it just lit this passion and excitement in me. I said, “Hey, can I record some of these, and maybe we do like a podcast?”, and she was totally down for it. It's just been such an innovative and fun way to disseminate science and engage many stakeholders. EBE: I want to thank Darlene Williamson, who's president of the National Aphasia Association for sending me a little more information. You told me about this group, and so I wanted to find out more. She provided this description by Michael Obel-Omia and his wife Carolyn, and I hope I said his name correctly, who provide leadership to this group. And they said that in this group, the Black American Aphasia Conversation group, “provides a place for Black people with aphasia to share their stories, provide support, meditation, and brainstorm ways to advocate and consider policies. We will discuss the unique challenges and gifts we share due to our experiences with disability and race.” I found out that you can reach out to the National Aphasia Association (NAA) for more information and to get on the email list for a meeting notifications. And in fact, I put the registration link in our show notes today. So, sounds like that group has been a meaningful discussion forum for you, too. SELES GADSON: It's been so fun. I share how for me, I've been in the field practicing for a little over 16 years now, and this was my first time being in a room with so many people that look like me. And for many of the survivors on the call, I was one of their first Black SLPs that they had ever met. Just even having that connection, and being able to speak to some of the challenges, and some of the things culturally that we both share has been my outlet, biweekly. EBE: I'm going to make sure we have that link in our show notes. Also, the link to your podcast because I encourage people to listen to Brain Friends, I've really enjoyed it.  When you and I were planning for this episode today, you talked about how being part of the National Aphasia Association's Black American Aphasia Group really helped to energize you and the research you were doing, and what a nice integration of life that was. I will want to tell our listeners about one more wonderful thing, and that's the interview you were part of on the ASHA Voices podcast as well as the related article in the ASHA leader, where I learned more about your journey to doing this research. So, as you provided clinical services for a Black client as an outpatient clinician, and this is pre- doctoral research, you recognized that there was a significant gap in the literature around working with African Americans with aphasia. You saw the need to understand the impact of aphasia on identity and motivation in order to best help this particular client. And those are both really important concepts within the Life-Participation Approach to Aphasia (LPAA) framework as well. So, then you shared that you got some important advice from an important mentor. Do you want to share what happened next? SELES GADSON: Definitely. So, one thing that's also unique about that time is that at that point in my career, I had worked in many of the clinical settings. I had done acute care, inpatient rehabilitation, skilled nursing facility, and even worked as a travel SLP traveling throughout the United States. And so, once I had got to that outpatient setting, it was different from any of the other settings because these individuals were home. And often times, they wanted to get back to work. I remember feeling a little discouraged because I wasn't finding research on a lot of functional treatment approaches or functional therapy. In addition, I wasn't finding research on black stroke survivors with aphasia. And so, I mentioned to one of my mentors at the time, Dr. Paul Rao. I said, “what's going on in the field? And I'm not seeing this, and I have this client, and I don't really know what to do.” And he said to me, “Stop complaining kiddo, and go back and get your PhD.” Admittedly, when he said it, it was kind of like, “okay fine, I'll go do it.” I don't think I realized all what it would take. That's what really made me pursue the degree was this notion that I could help facilitate some of that change and bring some of the research that I needed to see. EBE: That is so important. And that story really made me reflect on another story that has really impacted me from a dear colleague, because you experienced in your doctoral work some concerns about doing research on Black Americans because your interest was seen, as it said in I think the ASHA Voices interview or in the Leader, as “personally motivated.” Your story mirrors one that a colleague and dear friend, Nidhi Mahindra, told me as well. During her doctoral research, she was told that while pursuing multicultural interests were worthy, that she may face barriers to getting funding to pursue that line of work. That might be problematic, right? She had to struggle with that. Despite that daunting message, she persisted, and then was funded by ASHA on a grant studying barriers influencing minority clients' access to speech pathology and audiology. Nidhi reminded me how our life experiences can often inform our work in important and valuable ways. Davetrina, you've channeled your experiences into these explicit observations and data that you shared with your doctoral committee. That was a really important part of moving forward.  Do you want to share some of the points  gathered for that doctoral committee to help support why this research is so important? SELES GADSON: First, I want to thank Nidhi. Hopefully I'm pronouncing her name right, for her perseverance, because it was some of her work that helped me in my dissertation. Being able to cite her just really shows the importance that everybody plays in breaking barriers and pursuing the things that really speak to them. And one of the things that I'll clarify, it was two parts in pleading this case. The first part was that I changed the committee. I think that that was a supportive thing. And then, the second part was that when I prepared all of the research on why I needed to do this work. Some of the research looked at what we knew already with stroke recovery in minoritized groups, which was that Black African Americans were twice as likely to have a recurrent stroke than any other ethnic group and what we were seeing in the aphasia literature for Black Americans, which was the narrative of Black Americans having longer hospital stays, more hospital costs, but poor functional outcomes. And so, it was these two key pieces that I had really gathered. When I went back to the new committee to share and plead my case on why I really wanted to do this research, they had that initial onset of knowing that this research definitely needs to be done. I think that that's what helped it go through. EBE: Wow. I think those are really important reasons. That whole concept of allowing our life experiences to inform our work and to value that. As we start to talk about your research, and I'm really excited to get to share this amazing work you're doing, I thought it might be helpful to define some of the terms that are integral to this research Some of the definitions are a little tough to wrap your arms around because they're not consistent in the literature or are still waiting to develop. Let's start by discussing what you want the listeners to know about the definition for health-related quality of life, or, as we'll call it, HRQL. SELES GADSON: HRQL is operationally defined that it's multi-dimensional. The way I define it a lot in my work is the perception of the individual's ability to lead a fulfilling life in the presence of a chronic disease or disability such as aphasia, but really their perception in five domains. The five domains that I look at in my work are physical, mental, emotional, social communication, and then role, the individual's ability to get back into the activities that they used to be able to do. EBE: Okay, that's really helpful. I think we should also discuss or define patient-reported outcomes or PROs. Sometimes they are also referred to as PROM's, patient-reported outcome measurements. How do they relate to HRQLs? SELES GADSON: Patient-reported outcomes is a health outcome directly reported by the patient without interpretation. Patient-reported outcomes often look at the status of the health condition. The biggest thing about patient-reported outcomes is that it's without the interpretation of the practitioner. So, whatever the patient says is what we're going to take as gold. EBE: Why is it particularly important then to look at HRQOL for Black stroke survivors? SELES GADSON: That's such a great question. And so I want to break it down in two parts. I think the first part is that given the lack of normative data for Black stroke survivors, when we're only looking at clinician-reported outcomes, that's where we get to this bias and the normative bias. I know that there's research out where there are some outcomes to where we're already seeing this five-point difference. And for some research, that five-point difference is considered clinically meaningful. I think that if we're not using these patient-reported reported outcomes, then we put ourselves in a position to contribute to the disparities that we're seeing in standardized assessments. So that's the first answer. The second reason is that we know that nonclinical factors such as physician-race concordance drive up to 80% of what we're seeing in poor functional outcomes in minoritized groups. If we're not asking the person, then we're not able to really understand the things that they want to do, and we're already coming in with this majority type attitude which could influence one's participation in therapy. The last thing that I think is most important, whether you're Black, white, purple, whatever, is that we have these insurance demands that sometimes may not allow us to get to all the things that we may see from an impairment base. By using the patient-reported outcomes, we are helping structure therapy in ways that matter most to the patient. EBE: Well, that reminds me of this amazing quote that I was hoping I could work in today. I circled it in big yellow pen when I first read through your research. You said that it's really important because, due to the lower HRQL that we find in individuals with aphasia, it's “imperative that the development of a treatment plan incorporates what the patient prioritizes. And it's imperative that clinicians have a way to measure these subjective attributes to make a meaningful impact on care.” That's what we want to do. SELES GADSON: So important, because I think what we have to realize is that part of our role as the practitioners providing this skilled intervention, is really helping the individual get back to what they want to do. And I think that if we're not asking them what they want to do, then we're not really able to structure therapy in matters that mean the most to them, but also help them to start to recognize that as part of this identity with aphasia, that there's this new normal for them. Sometimes, individuals are going to rate themselves based off of what they used to be able to do. But if they know that one of their goals was to be able to talk on the phone, or to play bridge with their friends, and we worked on that in therapy, they're now able to look and see, before I scored my telephone confidence at a 50. Now I feel like I'm at a 90, and so sometimes that own self-recognition can support motivation, and can even support therapy, once insurance dollars run out. EBE: I really appreciated doing this deeper dive into PROs as I read through some of your research. And one of the resources I came across was a really interesting table that talked about six categories of PROs. And I'll put a link in the show notes to a 2015 book by Cella, Hahn, Jensen and colleagues called “Patient-Reported Outcomes and Performance Measurement.” (They list six different kinds of PROs in a helpful table.) But the main category that your work is utilizing is actually these HRQL measures. You've been stating why it's so important. HRQL PROs help to frame diagnostics and treatment because you're trying to prioritize what the patient wants and needs-- what they're expressing. SELES GADSON: Right, exactly. I think that one of the things that it's really important for practitioners to understand, is that these things are mandated by what we see in our scope of practice. When I say mandated, I mean we are called to reduce the cost of care by designing and implementing treatment that focuses on helping the individual. If we're not asking the individual what they want to get back to, then I think that we're putting ourself at a position that makes it more challenging to serve in that way. EBE: One of the things we like to do on this podcast is to provide resources that will help clinicians think differently or do something differently tomorrow as they meet face-to-face with their clients. And one of the things I thought we'd put in our show notes is a link to the PROMIS website, because that was something you've used in your research. Do you want to explain a little bit about that website? SELES GADSON: One of the things that I like about the PROMIS website is that it has a list of health outcomes available to use for a range of individuals-- for pediatrics, for adults. I like that it's free, most of them, and I think that it's a good place to start. Some of the outcomes on that website are also even appropriate for in acute care, meaning that they may not take a long time to administer. And so, I think that that's a good place to start. EBE: Well, thank you. And I want to move right into this wonderful paper where you are co-author with Wesley, van der Stelt, Lacey, DeMarco, Snider, & Turkeltaub, that looked at how brain lesion location interacts with HRQL. Can you share a couple key takeaways from that paper?  I hope you'll highlight the one related to depression and HRQL. We're having a lot of research right now around the emotional impact of aphasia and how that will impact recovery outcomes as well. So, tell us a little bit more about that work. SELES GADSON: We looked at the domains of health-related quality of life associated with specific deficits and lesion locations in chronic aphasia. We examined the relationship between HRQL using the Stroke and Aphasia Quality of Life Scale by Hilari and her colleagues, as well as a depression scale, and different impairment-based measures---our battery that we used here. What we found was that language production and depression predicted communication HRQL, meaning that those individuals that reported lower communication HRQL also had a significant depression associated with it. We did lesion symptom mapping in this study. Basically, what we were looking at is to see if HRQL mapped on to discrete areas of the brain. We found that individuals that reported lower psychosocial HRQL had inferior frontal and anterior insula lesions; where individuals who reported lower physical HRQL had lesions in the basal ganglia. This confirmed for us that even though HRQL is this subjective perception, we were seeing it map on to these very specific areas in the brain that also predicted some of the impairment measures that we know of. EBE: That can get us to start thinking about if we have patients with these types of lesions, maybe to be more on the alert for depression. I think that's one point you made. But you also mentioned another important takeaway in the study about the impact of depression on HRQL related to the training of SLPs. This all ties together. What are your thoughts there? SELES GADSON: I think that when we are recognizing that individuals with aphasia are experiencing a new normal, and I think that the research has been very clear on understanding that depression does relate to and contribute to one's communication. I think that there is an opportunity for speech-language pathologists to have more counseling classes. And again, make sure that we're tapping into what the patient wants to do in order to hopefully help mitigate some of those feelings of depression. EBE: I really endorse building those counseling skills in our graduate programs for our students, so they go out feeling more confident and more skilled and knowing that that is going to be an ongoing journey as a speech-language pathologist to build that skill set. SELES GADSON: And shameless plug, I think our episode six of Brain Friends is a mental health episode. I have one of my good girlfriend colleagues there who is a counseling psychologist. She shares with us helping skills for the practitioner, and we share on that episode10 skills that you can do as a clinician to support the person with aphasia. EBE: Thank you for sharing that. That's really important. And again, the link to Brain Friends will be in our show notes. Let's take a moment and talk about how you connect this finding about depression to the role of social communication, because you said it was those scores that were down in your measure. SELES GADSON: With that particular study or overall? EBE: However you'd like to discuss it. I'm opening that door to you. SELES GADSON: One of the things that we were seeing is that individuals were reporting the depression within this Communication HRQL domain. So even though we didn't dive into it too deep in this study, it was more of the correlation and recognizing that individuals that were reporting this higher level of depression, also have this higher level, or this lower report of communication HRQL, making those links specifically. I do have something that I'm working on right now, that will completely answer that question a little bit more solidly. I don't want to speak too much on this, so stay tuned. EBE: Absolutely staying tuned, there's no question. You also had another article that I found intriguing-- An article with your coauthors, Wallace, Young, Vail, and Finn, a 2021 article that examined the relationship between HRQL, perceived social support, and social network size in Black Americans with aphasia. And that paper highlights that there's been little research exploring HRQL in Black Americans. Of the five factors that comprise HRQL, why did you decide to focus on social functioning? And specifically social support and social network in this study? SELES GADSON: Well, that really came from the literature. One of the things that the literature said is that we knew that social HRQL contributed in some way, but we weren't sure what way. And we weren't sure what pieces of social functioning contributed. My apologies to the researcher who said it, but it set me up perfect for my dissertation work to say, “this is why I'm looking at social functioning in these two specific pieces,” because we didn't know. Was it social participation? Was it social network? Was it social support? That was one of the reasons why I wanted to pull out those two specific pieces. The other thing that was really important about this work was that it was the first study that really looked at what HRQL looked like in Black stroke survivors. We didn't know any of that. And so for me, it was really important to compare Black stroke survivors to normal aging Black individuals because I feel that for us to really get baseline understanding of what some of these factors are and how individuals respond in recovery, we have to compare them to their norm, or to other members in their community that look like them before comparing between Black and white or any other ethnic groups. This study is where we found that in terms of HRQL, the main difference between stroke survivors with and without aphasia and in our normal aging individuals, was that communication was the impairment. And then, with the social network and social support, we weren't seeing a difference between this homogenous group of Black people in those areas. EBE: That takes me to my next question, your research noted that the Black survivors with and without aphasia, have smaller social networks compared to white stroke survivors. That's the data that we have based on that social network data. Even though you weren't trying to compare in this study, per se, you still made sense of that finding-- trying to make sure that we don't make assumptions, and instead look at different factors that could be at play. How did you make sense of that finding, the smaller network? SELES GADSON: It was two things that allowed us to make sense of that finding. One was recognizing that in both groups, the stroke survivors with aphasia and our normal aging individuals, that because they were age matched, it could have been a factor of age--meaning that the individuals receiving the support quality and then their network, everyone was kind of in the same age group, and so, it was more of a factor of time of life versus actual culture. But then a lot of that came through in some of the anecdotal reports, and things that we even circled on the scale that we used--we use the Lubben Social Network Scale. With some of those questions, one might be how many people do you feel comfortable sharing personal details with? And often times, we got this report of “just my husband”, or “only God”. And so, we were seeing that some of this really related to the traditional and cultural values in Black Americans, where you're not going to share a lot of stuff with a lot of people. You have your set group, your small network. And that's okay. That doesn't mean that you're isolated.  EBE: I think another point you make, and maybe even thinking back to the ASHA Voices Podcast, why it's particularly important to target social communication. That is yet another life participation core concept. Do you want to speak to that for a moment? SELES GADSON: I think the thing that we have to realize with social communication is that individuals, especially within the black community, they are social, they want to talk, they want to get back to doing and interacting with their community. And so, one of the things that that looks like is maybe being able to participate again in Bible study or being able to stand up and read a scripture. And the only way that you know that, is by asking them that on a patient-reported outcome. I think that that's where that social communication piece is coming in. One of the things that I'm seeing with the Black aphasia group is that moment, that hour, where everyone is together, it's amazing. It's them using social communication. You spoke about how I said that that energized my research, and that was why--because I was on this call, and they were speaking about these things, that sometimes I feel like I have to explain to the powers that be why social communication or the LPAA approach is important. But here I was talking with all of these survivors, and they were telling me, I want to be able to communicate, I want to be able to do these things. It just really confirmed for me that this type of research, we were on the right path. EBE: Right. And this is my chance for a “shameless plug” because of my life work, and that is just the power of groups. The power of groups is amazing. SELES GADSON: You know, your life work and... EBE: Well, we don't want to go there, this episode is about you. SELES GADSON: Okay. I'm telling you; I'll get into just how influential your work has been, even when I was working as a practitioner and doing group therapy, it was your work and your research that I was going to. EBE: Well, I had the honor of getting to work with Dr. Roberta Elman, and starting the Aphasia Center of California and doing that initial research, that has been such a gift to me, so, but thank you, back to your work now. That's a great transition, because I'm going to bring us to your 2022 study, looking at how aphasia severity is modulated by race and lesion size in chronic survivors. That was an amazing study. I'm going to read another quote here from that study. And that is, “understanding the origin of disparities in aphasia outcomes is critical to any efforts to promote health equity among stroke survivors with aphasia.” You said this work led you to an “Aha!” moment. And I'd love for you to share more about that moment, and about this study. SELES GADSON: Yes, this was one of my babies, I would say it was definitely a labor of love. And it's been well received. One of the things that led us to this study was that we were already aware of what the research was saying, in regards to the narrative of Black stroke survivors having these lower scores, they were having poor functional outcomes, longer hospital stays. I really wanted to understand what components neurologically, were playing into that. The research has shown that Black Americans often may have a larger stroke due to a myriad of factors-- delayed hospital arrival, not being able to receive TPA. But I wanted to know what factors neurologically were contributing to what we were seeing, not only in this baseline difference that we were seeing, but what was the bigger picture essentially. What we found was that when we looked at race and lesion size, when we did an interaction of race and lesion size, that Black and white survivors with small lesions performed similarly. But larger strokes resulted in more severe aphasia for Black people, than white people. And that was something that we didn't quite understand, because if you think about it, the larger the lesion, the poorer your aphasia should be. But in this case, the larger the lesion, the white stroke survivors were performing better and so we offered two reasons for that. One was the potential assessment bias-- that maybe with the larger stroke, there was this code-switching element that the Black stroke survivors just weren't able to do. And we were seeing that in the larger strokes, and it wasn't being picked up in the smaller strokes. Then the other was the disparity that I had mentioned earlier, which is that access to rehabilitation. It might have been more evident-- we were seeing some of those disparities in the larger strokes. We know that individuals that come from higher earning SES groups have greater access to rehabilitation services like speech and language. That was our other reason, that we were wondering if that's why we were seeing that outcome. EBE: This reminds me some of the research that Dr. Charles Ellis has been doing. I attended his keynote speech at the IARC conference in 2022 that talked about understanding what is happening upstream, because it's going to impact what's happening downstream. In terms of health disparities, it's going to have an impact. I think your research supports that. We need to learn more about it and do the research you're doing. As you reflect on your findings across these amazing studies, this research that you've been doing, can you offer to our listeners some tips on how to have more confidence with intercultural contact? SELES GADSON: That's a great question. I think the first thing that that you have to do is put yourself in places where you are connecting with people that don't look like you. EBE: I agree. And that can be hard and challenging to do. SELES GADSON: It can be, but one of the things that I say is that it goes back to some of the things that Dr. Ellis has talked about, which is being intentional. That might mean going to a different side of the neighborhood to support a Black owned business, and being within that space, to feel how it feels to be around different cultures. The other thing that I think is really important, and it comes out of literature that looks at reducing racial bias in health care, which is to avoid stereotype suppression. So oftentimes, people may be thinking something and they don't want to share it, or they try to suppress it. And the reason why that's negative is because stereotype is a cognitive organization strategy that we use. And where it becomes negative is that if you're having these stereotype ideas, or you're just not sure, if you're not able to express them within a space that you feel comfortable with, then you suppress them. And then it kind of comes out in therapy. And so, I think that those are two huge things. And then the last thing that I would say is that it's really important to build partnerships. And so, building partnerships, either with local churches, within the university area, or just seeing how you can serve in order to help create some of that confidence. But you have to put yourself out there and not wait until therapy day. EBE: Wow, thank you for those tips. And one of them reminded me of something, a tip that a local educator suggested that, even if you don't feel like you're in an environment where your everyday social context might put you with people who look different from you, that you can still listen to other voices by listening to podcasts, sign up for podcasts, sign up for Twitter feeds of people with different voices, so you can start being present to that conversation. So that was something that I have found useful and really good advice as well. SELES GADSON: So true. The other thing that I did, even someone who identifies as a Black American when I was doing my dissertation work, and previously before some other things in my career, I noticed that perspective taking was a huge piece--putting myself or imagining myself in the individual's shoes. And so, for me, that meant that I went to Black museums and exposed myself to different cultural experiences. I wasn't going into some of these spaces, whether it was collecting data or even working with individuals from other earning communities, with some type of privilege. So even in that sense, I wanted to make sure that I checked my privilege as well by doing that perspective taking. EBE: Thank you,. And this discussion could keep going, but I know our time is getting tight here. This whole effort that you put in your research of looking at HRQL measures reminds me of some of the work that I've really admired by Hilari and you had a wonderful story you could share about her, your interaction and your use of her work. Would you like to share that quickly? SELES GADSON: Oh, she's so awesome. I was sharing how when I first was diving into this literature, her work was one of the pieces that I found, the Stroke and Aphasia Quality of Life Scale. I reached out to her and she shared this scale. And a couple of years later, I attended the International Aphasia Rehabilitation Conference in London. And she sat down with me. I asked her if she had any time, if we could just talk, and she was so welcoming. We sat down, and she might not even remember this, but even in that moment of us being able to talk about these things that we were both so passionate about, she just really spoke to me and encouraged me. And it's so funny, because now as I publish and do different things, my mom always says, “you gonna be just like Dr. Hilari.” EBE: Let's just do a shout out for mentorship, for people who take the time, and feel committed and passionate. Again, we're using that word again today, passionate, to support the new voices that are coming into the field. So that's the gift of mentorship. And in this whole discussion, you and I also talked about how important it is to be inclusive, and we talked about how HRQL measures sometimes are harder to use with people with severe aphasia and how they can get excluded from research. It's hard enough to get people with aphasia into the research, right? There's work by Shiggins and her colleagues looking at how often people with aphasia are excluded. But you made a good point about ways that we can include people with more severe aphasia. Do you want to mention that? SELES GADSON: I think one of the things that we have at our fingertips, and we know just from our training, is to use different visual cues to support those individuals that might have more severe aphasia. One of the things that we highlighted in the 2020 paper looking at the psychometric properties of quality of these patient reported outcomes, was that there are certain assessments that are perfect for individuals with severe aphasia, assessments like the Assessment for Living with Aphasia (ALA), because it has the pictures available and it has simple language. Just recognizing that even by using some of these compensation tools, whether it's pictures or modifying the language, we can still get the individual's perspective of what they want in therapy just by using some of these modifications. EBE: This reminds me, I can put one more link and resource into the show notes, because the Center for Research Excellence in Aphasia offers this wonderful speaker series. And there was just an excellent recent session by Dr. Shiggins on including people with aphasia in research. So, I'll put that link in. I want everybody to listen to that presentation. And finally, as our closing question for today, Davetrina, if you had to pick only one thing we need to achieve urgently as a community of providers, of professionals, what would that one thing be? SELES GADSON: I think we have to start using patient-reported outcomes. I think that if you were doing a clinician-reported outcome to assess the impairment, paired with that has to be some level of patient-reported outcome that will give you insight into what the patient wants to do. It's no longer optional. I think that we have to make it a paired thing with our clinician-reported outcome, is getting the perspective of the patient. EBE: I so agree with you, thank you. Thank you for this wonderful interview today. I really, really appreciate it. SELES GADSON: Thank you. EBE: And I want to thank our listeners for listening today. For references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. And there, you can also become a member of this organization. Browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. For Aphasia Access Conversations, I'm Ellen Bernstein Ellis and thank you again for your ongoing support of aphasia access. References and Resources Brain Friends Podcast: https://www.aphasia.org/stories/brain-friends-a-podcast-for-people-with-aphasia/ https://www.facebook.com/groups/1563389920801117 https://open.spotify.com/show/5xgkrhUhEIzJgxpRXzNpBH   Centers for Disease Control and Prevention (CDC) HRQL website: https://www.cdc.gov/hrqol/concept.htm     National Aphasia Association  Black American Conversation group registration: The Black American Aphasia Conversation Group meets through Zoom every other Monday at 4:00pm EST (1:00pm PST) . If you are interested in joining this group, please complete the form https://docs.google.com/forms/d/e/1FAIpQLSfJN9VWjrujhebT8Z48bqDZePOHYotipFC34S8T0X8_o8rG-g/viewform Patient Reported Outcome Measurement System (PROMIS) https://www.promishealth.org/57461-2/   Cella, D., Hahn, E. A., Jensen, S. E., Butt, Z., Nowinski, C. J., Rothrock, N., & Lohr, K. N. (2015). Patient-reported outcomes in performance measurement. . Research Triangle Park (NC): RTI Press; 2015 Sep. Publication No.: RTI-BK-0014-1509ISBN-13: 978-1-934831-14-4  https://www.ncbi.nlm.nih.gov/books/NBK424378/   Gadson, D. S., Wallace, G., Young, H. N., Vail, C., & Finn, P. (2022). The relationship between health-related quality of life, perceived social support, and social network size in African Americans with aphasia: a cross-sectional study. Topics in Stroke Rehabilitation, 29(3), 230-239.   Gadson, D. S. (2020). Health-related quality of life, social support, and social networks in African-American stroke survivors with and without aphasia. Journal of Stroke and Cerebrovascular Diseases, 29(5), 104728.   Gadson, D. S. (2020). Health-related quality of life, social support, and social networks in African-American stroke survivors with and without aphasia. Journal of Stroke and Cerebrovascular Diseases, 29(5), 104728.   Gadson, D. S., Wesley, D. B., van der Stelt, C. M., Lacey, E., DeMarco, A. T., Snider, S. F., & Turkeltaub, P. E. (2022). Aphasia severity is modulated by race and lesion size in chronic survivors: A retrospective study. Journal of Communication Disorders, 100, 106270   Gray, J. D. (2022). Transcript: ASHA Voices: Confronting Health Care Disparities. Leader Live. https://leader.pubs.asha.org/do/10.1044/2021-0902-transcript-disparities-panel-2022   Law, B. M. (2021). SLP Pioneers Research on Aphasia Rehab for African Americans. Leader Live https://leader.pubs.asha.org/do/10.1044/leader.FTR4.26092021.58   Lubben, J., Gironda, M., & Lee, A. (2002). Refinements to the Lubben social network scale: The LSNS-R. The Behavioral Measurement Letter, 7(2), 2-11.   Shiggins, C., Ryan, B., O'Halloran, R., Power, E., Bernhardt, J., Lindley, R. I., ... & Rose, M. L. (2022). Towards the consistent inclusion of people with aphasia in stroke research irrespective of discipline. Archives of Physical Medicine and Rehabilitation, 103(11), 2256-2263.   Shiggins, C.  (2023) The road less travelled: Charting a path towards the consistent inclusion of people with aphasia in stroke research.  Aphasia CRE Seminar Series  #36 (Video) https://www.youtube.com/watch?v=sqVfn4XMHho

          Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Katie Strong and I'm a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Dr. Debra Meyerson and Steve Zuckerman. We'll be talking about their bike ride across the country, Stroke Across America, as well as the importance of identity and storytelling in a person's journey with aphasia. Before we get into the conversation, let me tell you a bit about our guests. Debra Meyerson was, until her stroke in 2010, a tenured professor of organizational behavior at Stanford University's School of Education.  Debra's most significant contribution from that period was Tempered Radicals:  How Everyday Leaders Inspire Change at Work (HBS Press, 2001). More recently, she authored  Identity Theft: Rediscovering Ourselves After Stroke (Andrews McMeel Publishing, 2019) and is co-founder and co-chair, with her husband Steve Zuckerman, of Stroke Onward, a nonprofit working to ensure stroke survivors and their supporters have the resources needed to rebuild identities and rewarding lives.    Steve Zuckerman is, along with Debra, co-founder and co-chair of Stroke Onward; he has been Debra's care partner since her stroke in 2010.  He has held leadership roles at Self-Help, a nationally recognized economic justice nonprofit, since 2006 and still serves part time as a Senior Advisor.  Before that, he was a managing director at a private equity firm.      In the summer of 2022, Debra and Steve led Stroke Across America – a 100-day cross country bike ride, from Oregon to Boston, to raise awareness for stroke, aphasia, and the importance of the emotional journey in recovery.   In this episode you will: be inspired learning about the bike ride, Stroke Across America, and its effort to raise awareness about the emotional journal of living with stroke and aphasia. learn about the power of story in reconstructing identity in people living with aphasia. become aware of Stroke Onward's mission to support the emotional journey of rebuilding identities and rewarding lives.   Katie: Welcome Debra and Steve. I'm so happy that you are here with me today. Debra: Thank you so much, Katie. Steve: It's great to be here. Katie: Well, I'm just so excited for our listeners to be able to hear about what you've got going on, and I'd love to start with what you were up to last summer. You did an amazing bike ride across the U.S. called Stroke Across America. Congratulations! I mean it was a big deal! Can you tell us about it? Debra: Sure. Stroke Across America was a bike ride across the US and Canada to raise awareness about stroke, brain injury and aphasia. We wanted to spotlight the emotional journey after stroke. How do we rebuild our identities and live meaningful lives? We rode 4,500 miles over 100 days, traveling from Oregon to Boston. There was a core team of six riders and others who joined us for portions of the ride. We became a family. I didn't expect that. Katie: That's fantastic. Tell me about who rode with you and became family. Steve: As Deb said, we had six core riders most of the way across the country. In addition to the two of us, a woman named Whitney Hardy, who's actually a close family friend. She's a young woman in her thirties who unfortunately suffered a traumatic brain injury about four years after she graduated from college and suffers no ongoing physical disabilities but has some cognitive issues and memory issues. She rode with us from the beginning to the end. Another stroke survivor was Michael Obel-Omia, who I know is an active participant in Aphasia Access. Michael is a stroke survivor who also lives with aphasia. He joined us about 15 days late because his son was graduating from college, so he joined us in Missoula, Montana. We had two wonderful summer interns, Emily and Alex. We met Emily through her grandfather, who was a stroke survivor and hoped to ride with us but didn't end up riding with us. Emily and Alex are both students at Washington University, St. Louis. They traded off, one rode and one worked, every other day. We can't say enough about the wonderful, not just competent and great work they did, but the energy they brought. They really helped make it special. I guess our seventh team member was our then roughly one-and-a-half-year-old golden doodle named Rusty who was along for the ride. Sometimes she rode in a trailer behind our bike and sometimes in one of the support vehicles. We had a group called Bike Eternity, a gentleman named Arlen Hall, who really arranged all the on-road logistics and the route. He and his team were just fabulous in terms of just making everything work. That was our family. Katie: It's quite a crew. Fantastic. I was wondering if you could tell us about a favorite experience from the ride. Debra: We hosted sixteen community events across the country. They brought together survivors, families, friends, stroke care professionals, and more. It was really inspiring to be with all these people. Building community and collaborating with others is the only path to real change. And you were at the Ann Arbor event? Katie: Absolutely. Yeah. My friend Becca and I came down to the Ann Arbor event. I think it was Dexter or something. Debra: Yeah Katie: Boy, did we show you how we can have rain in Michigan! Debra: I know. Oh, yeah. Katie: Oh, my goodness. Yeah, it was great. Even though we had rain, there was so much great energy around the event. I can feel what you're talking about. Steve: I think the events were kind of really the most powerful experience. But Deb, you were going to talk about one particular ride you loved. Debra: I loved riding past Cameron Pass in Colorado for 30 miles up and 40 miles down. Katie: Wow! Steve: Yeah, so just to add a little bit to that, because I think that one day of riding really, I mean, every day was fantastic. We just loved the riding. But this one stood out for all of us. It was from a town called Walden in Colorado, a bit east of Fort Collins to a campground called Stove Prairie Landing. The pass we rode over was about 10,276 feet, so we were up there. And as Deb said, we rode up for 30 Miles about 2000 feet, but then got to come down 4000 feet. The whole ride was in a canyon with dramatic mountains and a river that we happened to catch at the right time of the year because the snow was melting. So, it was just a rushing river where we got the sound, the sights, and sometimes the spray of rapids as we're cruising downhill. And then there was just a perfect riverside campground at the end. It was just sort of a magical day. Katie: Yeah. As you were describing it, I wanted to use the word magical! So, I agree. Yeah. Fantastic. I'm sure it wasn't all easy street. I was wondering if you could tell us one of the hardest things about planning such a big activity. I mean, this was a big event. You had several events along the way, but you know, tell us a little bit about the planning. Debra: Organizing this event was so hard, but it was so important and so impactful. We had sixteen events: three events before we started riding in Palo Alto, Bend, and Portland, eleven along the way, and two in Boston after we finished. We had so much to do after the rides and after dinner, such as PR, social media, Stroke Onward, events, and a documentary film. There was so much to do! We are really tired. Steve: Yeah, I think the biking certainly was a lot, but we weren't trying to ride fast. You know, one thing I say about biking is, if you want to ride long distances, you just have to ride long distances. You get used to it. So, that didn't really feel like a strain for us. And the organizing of the route, particularly with the help of Arlen, kind of got done ahead of time. It was a lot of work, but he's a pro and we put it together. But it was really, I guess we're “Type As” who can't get out of our own way. We built so much into the trip that it really was those evenings and our theoretical “rest days,” which were nonriding days. We renamed them “stress days.” We felt like we had to get everything done. So, you know, that was the hardest part of the trip. It was just how much we packed in. We jokingly say, but it may not be a joke, “that someday we want to ride across the country where we have absolutely nothing to do but ride across the country.” That way, we can enjoy the evenings and the rest days, do a little more touristing, and spend time meeting people along the way. Katie: Yeah, it was very focused. You were very intentional about gaining awareness and supporting community. And I'm sure that it sounds like there was lots to do beyond just pedaling. You mentioned earlier about a campground, but I'm curious, where did you stay along the way? Steve: Our main support vehicle was an RV, pulling a trailer with a lot of gear. We organized mostly around staying in campgrounds. Partly to keep the cost down and partly because we didn't want to have to stay rooted to where the hotels and motels were. And so, Deb and I got the privilege of sleeping in the RV. It was a small RV, but very comfortable. And the rest of the group was camping, so we had tents and cots, and all you would need for relatively comfortable camping. About one or two nights a week, we would end up staying in a motel, partly just to give the folks who are camping a little bit of a break. We actually came to enjoy the RV so much; we almost preferred it to the hotels. Then, one of the real highlights of the trip was we were able to see a lot of friends going across the country. Particularly in the cities where we held events. We almost, with maybe one exception, always had a rest day connected to the event. Probably at about half of those we ended up staying with friends. That was really special to be able to involve more people in our lives in the journey. Katie: Yeah, I was thinking when you were in Ann Arbor. Deb, you had a number of colleagues and friends that came to the Dexter event. Debra: Yes, in Detroit, two days later, we met with my middle school buddies, Debbie and Debbie and Debbie. Katie: I love that, fantastic! That's great! Well, riding across the country is a huge endeavor. What made you decide to do it? Debra: Steve. Steve: Deb would say, “Steve made me decide to do it.” Well, actually, it is true. I had a close friend from college who rode across the country right after we graduated from college. From that day, I always said, “that's something I want to do”. As I got older and older and hadn't done it, it was kind of rising to the top of the proverbial bucket list. But cycling really has been a huge part of our recovery from Deb's stroke. It has been the best way that we can continue to do a lot of the things we love - exercise, adventuring, seeing new places, and spending time with friends. We had never ridden a tandem before Deb's stroke, we rode individual bikes. It was a bit of a challenge for Deb to give up control, understandably. But when we saw the opportunity to do it with a purpose, that's what kind of got us really excited. We were just starting to build Stroke Onward, we wanted to build awareness for the importance of the emotional journey, and events create good opportunities to attract attention. So, what better thing than to do something you've always wanted to do and do it with a purpose? That's kind of how we got going. Katie: Well, it is inspirational, and I know a big focus of the trip was to raise awareness about stroke and aphasia. Debra, for people who might not know, could you share a little bit about your life story. Debra: Of course. My life story started earlier. In 2010, I was a professor at Stanford. I studied, taught, and wrote about feminism, diversity, and identity. Then, I had a severe stroke. For three years, I did therapy almost full time. I had to get my old life back, but I couldn't. My disabilities, especially aphasia, forced me to leave my job at Stanford. Giving up tenure was like a second punch in the gut. It was a huge trauma on top of my stroke trauma that started my identity crisis. Who am I now? Katie: So, Debra, I think that's what sparked you writing a book called Identity Theft. Can you tell us a little more about that? Debra: I had written two books before my stroke. I decided to write another book after my stroke, Identity Theft. Writing Identity Theft became my learning journey. It has helped me rebuild my identity. It took me five years, and I learned to accept lots of help. No one told me rebuilding identity is so central to recovery. I learned firsthand that it's so important. While researching Identity Theft, I learned that other survivors think so too. They had no advice and support for this.  Steve: Maybe I'll add. Deb mentioned doing research for Identity Theft. From the very beginning when Deb decided to write a book, she didn't just want to write about her story. She was an academic, she wanted to bring in other people's points of view. And so, Deb interviewed twenty-five other survivors and probably another thirty-five people who were care partners, friends, families, and professional caregivers. Kind of the idea being that she wanted to be able to write about a diversity of people and stroke experiences because that would make the book more relatable and more accessible to more people. And that really kind of gets at one of the things that really struck me about Deb writing Identity Theft. In many ways, the writing of the book really reflected her personal journey. That at the beginning, she was kind of writing it to prove she could, she didn't want to let go of that identity as an academic. But very quickly, she realized that the process of writing it, as Deb said, was kind of her journey. She was able to turn her knowledge of identity and the lens on herself to really help rebuild her identity and her life. But along the way, she realized, “Man, there are so many other people out there who aren't being told about this and need resources.” I say this all the time, choosing to write a book when you have aphasia has got to be one of the bravest decisions because it puts you face to face with your frustrating disability every day. And there were a few times when Deb came downstairs and said, “I'm done,” “I'm not finishing the book,” “This is too frustrating,” and “I can't stand it”. But it was that knowledge that it could help other people that got her to push through that frustration. And that gets to kind of one of the big themes of our work, which is about finding purpose and having purpose and how that's often our biggest motivator in life, what we can give. So, that's kind of a little bit of the history of the book. Katie: I appreciate you sharing that. And as you were both talking, you were talking about this journey. And you know, thinking about the story and the writing and the rewriting of your identity. It really isn't about the product, not necessarily the book, which maybe initially that's what you were interested in Deb. But really, the journey is where all the work and the reintegration of who you are and who you're going to be is. very powerful. Very powerful. It's such a great read. I've enjoyed the book very much. So, you have even moved forward beyond a book, and you've started a nonprofit. It's been established for a little bit now. Can you tell us about your nonprofit, Stroke Onward? Debra: Yes. I created it three, no, four years ago? Our mission is to ensure stroke survivors and their supporters have those tools necessary to rebuild identities and rewarding lives. The vision is a stroke system of care that fully supports every survivor's emotional journey and recovery. Steve: Maybe I'll add. I think, clearly, the issues of critical care and helping people survive a stroke, and then all the work on rehabilitation is critical. What we saw is that a lot of people don't get all their capabilities back. It's almost like, well, if recovery means rehabilitation, then does that mean everybody who doesn't fully recover their capabilities, has a failed recovery? And we were just unwilling to accept that. Recovery had to mean more than just capabilities. That's why we decided to really focus on that next step in recovery, which is the emotional journey. So, we really think about our work around three areas. One is raising awareness, just that this whole issue of the emotional journey is really important and doesn't get enough attention. Even if people realize it's important and say, “Well, gosh, where can I get help with this?” There aren't enough resources out there. You know, at the end of the day, as Deb said, “it's about system change.” That we would hope that 10 years from now, a person who suffers a stroke and their family enters a system that not only provides good critical care and points them in the direction of good rehab, but also creates a framework and resources for this part of recovery, for the emotional journey. I won't go through all the actual things we do. Hopefully, you'll be able to post the website and people can go and see more about stroke onward, www.strokeonward.org, easy to remember. Katie: Absolutely.  Debra: And there's the book discussion guides. Steve: Yeah, well, one of the places in that the speech therapy community has been so supportive and such a wonderful partner is with the creation of our book discussion guides. Our colleague, Jodi Kravitz, led the creation so that the book can be more accessible. There's a guide, you know, with the idea being a group of people with aphasia can read the book together and have a facilitated discussion with a guide. But also, we created separate guides for families, speech therapists, and other health care workers. Just again, the whole idea of trying to make the material accessible, digestible, and useful for people who are going through what we went through, which was the identity crisis and having to rebuild our lives. Katie: Absolutely, we use the resources for our local book club here at Central Michigan University and our Lansing Area Aphasia Support Group. The materials were great, but the book just brought forth so much rich discussion. Debra: Yeah. Katie: You know, not all of it was easy to read. There is some tough stuff; you don't skirt the issues. I think it really was a very meaningful experience for our members and the students that were a part of the group to be able to hear the journey, to hear what maybe hadn't been addressed, to hear how people had moved forward with things, and the areas where we really do need to be thinking more about as healthcare providers. It is important that we can support the whole person and not just fix the physical or the language. It's a whole emotional journey that you're moving forward with, which in Stroke Onward is really important. Well, as you know, a lot of my work is about the importance of storytelling. Deb, I was wondering if you could talk about how storytelling impacts your work. Maybe even share a few stories from your work. Debra: Sure. Storytelling is so important. We are always changing, and our stories evolve over time. Storytelling helps us navigate the emotional journey after a stroke. And in my book, Identity Theft, I share my story and the stories of others so that survivors don't feel alone. I would like to share one story that helped me recognize that life could be good after my stroke. Seven months after my stroke, my friend Ann invited me to her 50th birthday weekend in Palm Springs with tennis, hiking, talking, and biking. I said, “No...no, no, no.” I would need so much help, and most of all, I could barely talk at all. Conversations would be loud and lively. I would feel frustrated, jealous, and sad. Kim, my friend, said she would help with everything. She said she would help me have fun. She was there for me. I was nervous, but I decided to give it a try. At first, I was determined to be the “old Deb” at the party, but the frustrations were constant. Conversations were too fast, and the friends trying to help did not give me time to find the words. I was frustrated constantly, but I decided to enjoy myself anyway. The night of the birthday party, I danced a lot! Great music, so fun. I was not the “old Deb” anymore, I was a newer version of myself. I could spend my time with my friends dancing, laughing, and enjoying what is essential in my life: friends, community, and fun. It is so hard, but it is so important. Pushing myself to be social and telling stories about it has been so important to my recovery. Katie: Thanks for sharing, it's a great story. And well, I mean, you sound like you have fabulous friends, but it sounds like Kim really was one that stuck around and was willing to help you through some of that change. Steve: And if I can add one other story, which kind of gets to how Deb reclaimed some of her old identity. In this case, her identity as a mom, and Deb tells the story in the book. When our daughter Sarah, who at the time of Deb's stroke was 15 and was not a big dater in high school. But about a year and a half after Deb's stroke, she got invited to the prom her senior year and she started going out with this guy. And I kind of said to Deb, you know, you never had that mother daughter talk with Sarah. And Deb hadn't been too active in parenting for that year, year and a half because she was you know, fighting for her recovery. I said, “You know, maybe you should be the one, as her mom, to have the talk.” And so, we kind of told Sarah that we wanted to talk to her. We were all standing around the island in the kitchen. Sarah kind of knew something was coming but didn't quite know what. And you know Deb's speech was nothing like as good as it is now back then. You could just see the concentration on her face trying to figure out what she was going to say. And she kind of slowly said, “Boyfriend? Yes. Pregnant, no!” And that has been dubbed by all of our friends for the world's most efficient and effective mother daughter talk. It was funny; we all just burst out laughing. It was really a great kind of wake up for us that Deb could reclaim a lot of aspects of her identity, but she would just have to live them out differently. And that just because they had to be different didn't mean she couldn't live them out. That was one of our favorites. Katie: That is a good story. What I love about your sharing of the stories and where your work brings storytelling to life. One of the things that's happening in the literature that's coming into practice, particularly in the UK, and over in Australia, and hopefully maybe over here in the U.S. sometime, is this idea of step psychological care for aphasia. We'll put something in the show notes if listeners want to check this out a little bit more. This idea consists of different tiers to support mental health and particularly depression in people with stroke and aphasia. At that bottom tier, which is supposed to be accessible to every stroke survivor, one of the level one interventions is storytelling. So, it's that powerful, you know. It's not just fun to tell stories; it's very important to who we are as people and integrating our mental and emotional health into who we are. Steve: Deb, did you want to mention somebody you interviewed for the book that particularly talked about storytelling? Debra: Yes. Randy enjoys storytelling, and he is a stroke survivor from St. Louis who I interviewed for the book. Randy and his wife, Rose, started their own aphasia meetup group. Social connections were really important to him. Steve: And he talked a lot about how he gradually got more and more comfortable telling his story and how much that helped him. He spoke at our community event in St. Louis, and I thought he kind of stole the show when he said, “My stroke changed my life, but it will not hold me back.” I just kind of well up because that's what it's all about. And he said it so eloquently. Katie: Powerful, powerful. Well, Debra, can you tell us a little more about this idea of identity? Debra: Sure. Barbara Shadden and you, Katie Strong, I am so thankful. Identity is our narrative about ourselves over time. We have not one static identity, we have multiple identities. We are always changing. Relationships like friends, family, colleagues, and others are a big part of making who we are. Identity is a choice. Instead of asking, “Who am I now?” ask “Who do I want to be now?”. Katie: Powerful. I like it. Debra, could you talk about aphasia specifically, and how that plays into your views on identity and your recovery? Debra: Yeah. Communication is so central to everything we do and to my identity. Having communication challenges just makes everything harder. Steve: And I'll just add that sometimes in recovery, the physical stuff, you know, trying to walk better or get use of a right arm back, would tend to be the focus. But in reality, the aphasia is really the thing that has challenged her identity the most because it was the communication that forced her from a career she worked so hard to achieve. Also, friends and interaction are so central to who Deb is, and that has just gotten so much more challenging. So, not to diminish the impact of physical disabilities, but aphasia is big and really central to the recovery process. Katie: And I think you know, you mentioned Barbara Shadden earlier, but you know her idea of identity theft. We are the stories that we tell and when we have trouble with the that one thing that we use for story, that tool of language that is impaired, or changed or broken, or, you know, smaller, or however we want to view it with having aphasia, it really makes a significant impact on how you view yourself and how you can connect with other people that are important to you. Debra: Yeah. I agree completely, and I am so lucky to have friends and family to support me. Steve: And I think what you said, Katie, is so powerful, and it's why we talk a lot about how few people really know and understand what aphasia is. I think that's because there's this, whatever the opposite of a virtual cycle is, it's the doom loop cycle of aphasia. Aphasia impacts people's identity so that they don't want to speak if they have aphasia because it's not consistent with who they think they are. But because people don't want to speak with aphasia, nobody knows what it is. And so that, you know, makes it that much harder to speak with aphasia. And I think, you know, that gets to this notion of purpose sometimes driving people through what's hard and what's uncomfortable. That was true for Deb and played a role in making a decision that “Yeah, I really wish I could speak the same way I used to.” We've had so many arguments about Deb saying, “I was terrible," because she was evaluating her speaking performance against the way she would have done it before her stroke. Yet, Deb's been willing to push through that, to be out there. You know, that's part of our work of trying to network with other people and encourage people to get out there and tell their stories because that's the only way the world is going to learn. Katie: And that you're doing, which is so appreciated and inspirational. Steve, I know your work is as much about supporting care partners and other family members as it is about supporting survivors. Can you share a bit about your journey through all of this? Steve: Oof, it feels like that could be a podcast in and of itself. But you know, I think maybe the nugget that I'll share is it's pretty obvious that people who are close to somebody who has a stroke or aphasia, our lives are going to change. Things we used to do; we can't do. Help we didn't used to have to provide, we do have to provide. I think the real “aha” for me personally, was that I needed to focus on my identity change as well. It wasn't just Deb's identity. And for me personally, and I've talked to a lot of care partners about this, really embracing “care partner” as part of my identity. Not just something I had to do to support Deb, but part of who I now am. This was really important to me because that mind shift actually helped me resent some of the changes in my life less. It was just, like Deb said, our identities change, our lives change, this is just another change. If I can embrace that as a change in who I am, then those just become part of life. Not that they're not frustrating sometimes, but it's a lot better. So I think, you know, Sarah, our daughter, is when you talk about the impact on family. And again, this story is in the book as well. But again, not just the impact on her life, but the impact on her and who she was. About two years after Deb's stroke, she gave a talk to her whole school community. Sarah talked about the experience of watching her mom have a stroke, and how she wanted to be like her mother and be strong and tough it out. People were offering to help, and she said “No.” She was going to soccer practice, she was doing all of her assignments, and she was visiting Deb in the hospital; she was going to tough it out because she wanted to be strong. Then, she started to see Deb accept more help and she started wondering, well, maybe I can accept some help. She started to let her friends in and let herself be vulnerable. She kind of realized that real strength isn't about toughing it out, real strength is about being vulnerable and using your relationships. Sarah's an athlete, and she ended the talk with, “Even the world's strongest person needs a spotter.” I well up just telling the story. When she told it, we went through boxes of tissues. But that changed her as a person in ways that actually, you know, maybe she would have gotten there eventually, but not when she was 17. I think that's what we talked to a lot of the families and care partners about. Allow yourself to think about how this experience can change you as a person and try to embrace some of that change where you can. Katie: Powerful. Debra: And the families, Danny, Adam, and Sarah. The families are affected. Katie: Yeah. Aphasia just doesn't happen to the person who has it. Well, Deb, you mentioned that there is one part in your book that sums up a lot of what you were trying to share with other survivors and their families. Maybe we can end with you reading from that paragraph. Deb: Faced with a trauma like stroke, the opportunities for both challenge and growth are great. We can clarify what we value most in life, set goals that will help us meet them, and achieve repeated small wins in pursuit of them. In this way, we can achieve not just recovery, but satisfying growth and fundamental meanings in our lives. Katie: I love it. Yeah. Challenge and adversity, thinking forward into the future, and having goals, purpose, and meaning. It's what life is about. Well, this has just been a fabulous conversation. Thank you both for taking time to share with us a little bit about what you've been up to over the summer and inspire us with some of your stories. Debra: Thank you. Steve: Thank you. Well, that wraps up this episode. Thank you for listening. For references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. There you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. For Aphasia Access Conversations, I'm Katie Strong. Thanks again for your ongoing support of Aphasia Access.   Information about Stroke Onward   https://strokeonward.org/  Stroke Onward website Instagram Facebook Twitter YouTube Identity Theft Book Club Materials developed by Jodi Kravitz, Ellen Bernstein-Ellis, Liz Hoover and Stroke Onward https://strokeonward.org/bookguides/   Resources Related to Identity and Aphasia   Meyerson, D., E., (2003). Tempered Radicals: How Everyday Leaders Inspire Change at Work. Boston, MA: Harvard Business School Press. Meyerson, D. & Zuckerman, D. (2019). Identity theft: Rediscovering Ourselves After Stroke. Andrews McMeel Publishing. www.identitytheftbook.org Shadden, B. (2005). Aphasia as identity theft: Theory and practice. Aphasiology, 19(3-5), 211-223. https://doi.org/10.1080/02687930444000697 Strong, K., & Shadden, B. (2020). The power of story in identity renegotiation: Clinical approaches to supporting persons living with aphasia. Perspectives of the ASHA Special Interest Groups. https://doi.org/10.1044/2019_PERSP-19-00145 Listen to Episode #5 of Aphasia Access Conversations Podcast featuring a conversation between Katie Strong and Barbara Shadden about the important role story has in supporting identity in people who are impacted by living with aphasia. https://aphasiaaccess.libsyn.com/insights-and-aha-moments-about-aphasia-care-with-professor-emeriti-barbara-shadden   Resources Related to Stepped Psychological Care Listen to Episode #34 of Aphasia Access Conversations Podcast featuring a conversation between Jerry Hoepner and Ian Kneebone about stepped psychological care and other research related to supporting the emotional journey of living with stroke and aphasia. https://aphasiaaccess.libsyn.com/34-in-conversation-with-ian-keebone Kneebone, I. I. (2016). A framework to support Cognitive Behavior Therapy for emotional disorder after stroke. Cognitive and Behavioral Practice, 23(1), 99-109. https://doi.org/10.1016/j.cbpra.2015.02.001 Ryan, B., Worrall, L., Sekhon, J., Baker, C., Carragher, M., Bohan, J., Power, E., Rose, M., Simmons-Mackie, N., Togher, L., & Kneebone, I. (2020). Time to step up: A call for the speech pathology profession to utilise stepped psychological care for people with aphasia post stroke. In K. H. Meredith & G. N. Yeates (Eds.), Psychotherapy and aphasia: Interventions for emotional wellbeing and relationships (pp. 1-16). Routledge.    Acknowledgements – A special thank you to Amanda Zalucki and Emma Keilen from the Strong Story Lab at Central Michigan University for their assistance in the transcription of this episode. Cite as: Bertram, M., Isaksen, J., Toft, L. E., Olsen, A. M., & Breckling, M. (2021). Evaluering af projekt Forløb for borgere med afasi samt afrapportering af implementeringsopfølgningen KomTil – fra udvikling til drift. Unpublished report from University of Southern Denmark.

I'm Ellen Bernstein-Ellis, Program Specialist and Director Emeritus for the Aphasia Treatment Program at Cal State East Bay and a member of the Aphasia Access Podcast Working Group. AA strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resource I'm today's host for an episode that will feature Kathryn Shelley, former Aphasia Access President and co-founder and current Grant Director for the Aphasia Center of West Texas. Kathryn was our guest for episode #1 of the Aphasia Access Conversations Podcast and we are delighted and honored to invite her back to be the guest on this 100th episode of our Aphasia Conversations Podcast. We'll discuss financial sustainability of Life Participation programs across a variety of settings, with a focus on best practices for fundraising. Guest bio   Kathryn Shelley has over 30 years' experience in nonprofit management, board leadership, strategic planning, marketing, and fundraising. She is co-founder, prior Executive Director, Marketing & Development Director, and currently the Grants Director for the Aphasia Center of West Texas, one of the earliest community-based nonprofits in the U.S. to incorporate the Life Participation Approach to Aphasia. Prior to her father's stroke in 2001 and his resulting aphasia, Kathryn was lead designer and co-owner of a marketing and graphic design firm in Austin Texas. Listener Take-aways In today's episode you will: Hear how two events involving chocolate and rock and roll have grown awareness and funds. Find out how typical stages of organizational development might influence your fundraising capacity. Gain practical tips for sharing the impact of your aphasia program to help raise awareness and funding. Learn about some resources available for supporting your nonprofit know-how. Show notes edited for conciseness and clarity Ellen Bernstein-Ellis So, Kathryn, I want to give you a shout out and just a great big welcome. It took 100 episodes, but thank you for coming back. Kathryn Shelley Thank you so much for having me, Ellen. Ellen Bernstein-Ellis  01:24 Absolutely, I was glad to introduce you. You've done so much and have worn so many different hats, Kathryn, and I'm excited to get to have a discussion with you today. So again, welcome. Kathryn Shelley  02:20 Thank you. Ellen Bernstein-Ellis 02:21 We like to start off the episodes with a fun question. Can you share an Aphasia Access favorite resource? Kathryn Shelley  02:33 Well, it's a hard pick, there are so many. But let me tell you about the one that I'm involved in right now - top of mind. It's an online certificate and badge course, E-badge course, called Person Centered care, Life Participation Approach to Aphasia series. Aphasia Access just launched the first in that series called The Life Participation, Knowledge Course. It's so much more than a webinar. It's contemporary, and it's how you interact with each of eight modules. You earn .25 CEUs, and at the end you receive a clickable E badge which takes anybody, an employer, your peers, if you have that in your email signature, to a site that shows everything that you did to earn that badge. It's so contemporary and so comprehensive, and it will give someone a foundational understanding of the Life Participation Approach. I'm loving working with Melinda Corwin and Nina Simmons-Mackie, and just the entire team of subject matter experts. The reviews are coming in from both professors teaching the next generation and current speech pathologists that it is really fantastic and very, very helpful. Ellen Bernstein-Ellis 04:06 We can also point our listeners to Episode 92 to learn more about this course, because we actually interviewed Melinda and Brooke Hallowell. So that's another place they can go to learn more.  Can you explain to the listeners how they can access the course? Kathryn Shelley  04:27 On AphasiaAccess.org, you'll see the link on the homepage that will take you over to our new Academy, which is the platform where all of our interactive courses are. It's an easy sign up to be on that platform, and then you'll see the course right there. Ellen Bernstein-Ellis  04:48 That's great. Thank you. I don't blame you for picking that today for a favorite. To celebrate this 100th episode, I was wondering, Kathryn, if I could ask you to share with our listeners the backstory to the start of this podcast. Just a little insider history. Kathryn Shelley  05:07 Sure. Let's see. It was Nina Simmons-Mackie and I in a daydreaming conversation wondering how to reach busy professionals with a free product to connect them to the wealth of practical tips and information that is available through all the people that make up Aphasia Access. It was Nina who said, “How about a podcast, people wouldn't have to carve out work time, they can listen in a car, or on a  walk, anytime.” And then we brainstormed who might entertain heading up this new endeavor and be the type of person others would say yes to. So Ellen, I was simply the one fortunate enough to pitch the idea to you. So it's really you and the amazing podcast team that made it happen and keep it going. Ellen Bernstein-Ellis  06:01 Thank you. Those are very, very kind words, and very appreciated. I just have to give a shout out to my colleagues who have been part of this collaborative team along the way, the whole 100 episodes. Nidhi Mahendra, Katie Strong, Jerry Hoepner, Janet Patterson, and Alyssa Rome. They've all contributed to this podcast so much and they are a joy to work with. And of course, I have to thank Todd Von Deak, Jess Campbell and Lisa McCracken, of Aphasia Access, who make sure we have all the logistical support in place. And one more thank you, and that's to the 100 plus guests. Just thank you for sharing your stories and your incredible work with our listeners. You know, maybe one more thank you, and that's to the listeners, because we just so appreciate the support. Thank you for sharing the podcast with your colleagues and your students. We are excited to see it grow. Kathryn Shelley  06:53 You told me that there's over 102,000 downloads that have been verified. So how cool is that? Ellen Bernstein-Ellis 07:02 We've been amazed to see that it's being listened to in over 50 countries. We've just been really excited and honored to be part of this. So thank you. And again, I'm glad you're here today. We didn't get a chance to describe your Aphasia Center very much when you were interviewed for episode one. You did share the why though, how your dad's own experience with aphasia was an important part of the story for starting the Aphasia Center at West Texas in Midland. You are a co-founder of that center and it's celebrating its 20th anniversary. That's a really special milestone. Maybe you could share a little bit about what your center looks like today. Kathryn Shelley  07:45 Sure, we're in a standalone building. We have multiple groups three days a week. Conversation groups are the backbone. Additionally, we have raised bed gardening, cooking, computer lab, and woodworking. All the groups are ever changing through the years according to the interests of our members. We've had book clubs, singing, photography, art,. Until COVID, we had a very active out and about program, which got people out of the center going to field trips to local museums, nature preserve, restaurants. We're all so glad it's starting to ramp back up. Ellen Bernstein-Ellis  08:25 Sounds like amazing programming. I just have to acknowledge the 20th. It's a special milestone and really something to celebrate and an opportunity to reflect. Kathryn Shelley  08:35 Yes, it definitely is. And I'm really humbled and proud that 20 years later, that the spirit of the place, the spirit of the Aphasia Center looks and feels really as vibrant as it did during our startup years. I think that vibrancy remains so contagious, because we continue to serve our mission, which is to walk alongside aphasia survivors, who thought their life was basically over, then watch that depression evolve into hope and a pathway to embrace life again. So it really continues to be those real life stories that keep our staff, our volunteers and our investors so energized. I think in terms of today's financial sustainability topic, at 20 years, that looks different than in the very beginning, because we have investors that have now been with us for decades. They've guided us through the stock market crash of 2008. And then when we outgrew our early meeting spaces, to launch a capital campaign and buy a building. There are people who have stepped up through COVID. So we've really grown into our mature stage of development and our reputation certainly helps us attract and sustain these long term relationships. Ellen Bernstein-Ellis 10:05 Kathryn, your center works really hard at cultivating grant support and building a donor base. But I really want to share with the listeners some of the stellar annual events that are associated with your center. I certainly have been watching this infamous Chocolate Decadence event that you host prior to Valentine's Day each year. I'm really just in awe of your center's ability to create these events. Could you share some tips on how you build a successful team to take on something like this and how the members of your center are involved? Kathryn Shelley  10:43 Sure. The first thing I would say is do not attempt this in year one. Events, special events, just take so much staff time and volunteer effort to put on. Chocolate Decadence started in our fourth year, when I would say we were entering our adolescent stage of development. Our donor base and our database was growing. We'd populated our board by then with people in media and marketing plus leaders in business and health care. Word was getting out in more and more spheres about us. Invitations to speak were on the wise, and that's when a generous woman with a long history of philanthropy and volunteer service presented her idea to our board. She came to us and to our board and said that she had just attended a chocolate themed fundraiser in another state, and that she thought it would do well in our region. And then, of course, everybody was over the moon at that idea. And she said, if you're interested, I'll chair the first year. She brought her own volunteers in the beginning, then it evolved from there with friends of friends, and it kept going. So at this point, Chocolate Decadence continues to be an elegant night, and it raises around 40% of our general operating funds. It is the gift that keeps on giving. Members do attend the event too. What's more life participation than that? One of the really dear things is that a family of one of our very loved founding board members who passed away knew what the center meant to their mother. That family underwrites the cost of the member tables as a way to honor their mother. Ellen Bernstein-Ellis  12:42 That is fabulous. What a great way to bring the community together and have the stakeholders be part of a really important night. So that's great. And it sounds to me like you're saying these events just take quite a team, like you need a cadre of volunteers. Kathryn Shelley  12:58 That's exactly right. We certainly have a large number of terrific volunteers who show up that night to help. One thing that I've seen really talked about in the volunteer world is that trends have changed over the last 20 years. And, of course, more after COVID. So there used to be a generation of community volunteers who made volunteering their job. And they served on lengthy committee tasks. They really took care of so many things about Chocolate Decadence. We've not seen a new generation that has that level of flexibility today. So I have to say Chocolate Decadence has streamlined by switching to a more full service venue and contracting out a lot of what volunteers handled before. Ellen Bernstein-Ellis 13:53 Yeah, I think I've noticed that too. And some of the other organizations that I've been involved with have noted this kind of change in trends of how you have to utilize volunteers. Kathryn Shelley 14:02 That's true. That's very true. Ellen Bernstein-Ellis  14:05 Well, I know that Chocolate Decadence is just an amazing event. It has chocolate, so you're off to the races with that.  But you also do a concert, could you share a little bit about what that looks like? So I think that's a summer gathering. Is that right?  Kathryn Shelley  14:21 That's  right. And the Aphasia awareness concert is a different goal. Its main goal is awareness. So yes, it's an outdoor event with a fun tribute band. General Admission is free. So this year, you'll feel like you're witnessing Elton John in his early years. Ellen Bernstein-Ellis  14:40 Oh, now that's great. Kathryn Shelley  14:43 Yeah, so during the concert, we raise awareness about aphasia, how it impacts people, and that there's an Aphasia  Center to help. The cost of the band is entirely underwritten by sponsors. And then because it's a free event, our television newspaper, and radio stations, trade or greatly reduce the cost of airtime for all the advertising. So it's a win-win as the media and a number of businesses want to have their names on the stage banners seen by that audience that night. It's usually a couple thousand people. Both of these events are just great ways for Aphasia Center members and families to get out of the house and participate. The fundraiser of Chocolate Decadence and the awareness raiser of the Concert are our two yearly events. Ellen Bernstein-Ellis  15:37 Both of them build community in their own way.. That's fabulous. Today I've been thinking about how we're going to talk about this. And whether you are a community based center, a university, or even a hospital program, sustainability has several pillars, and I am so glad that you kindly agreed today to address one of those pillars, specifically financial sustainability. I'm particularly grateful for this chance to learn from your expertise, Kathryn, because most SLP training programs rarely offer instruction on program development and management. Yet, we are frequently motivated to launch programs to meet the needs of the community we serve, and we often learn as we go. But this lack of knowledge might be a barrier to someone wanting to start a program. You mentioned during our planning meeting that there's a fundraising framework that involves understanding the organizational development stages, and you've already started to sprinkle our conversation with those words. Could you explain those stages to the listeners? Kathryn Shelley  16:44 Sure. So the typical stages, particularly in nonprofits, and I think they overlap to other settings, are often called infancy, or startup, adolescence and maturity. Most every organization or a program begins with a compelling story by someone who is smack in the middle of that story. So if we think about Jodi Morgan, who is a huge hearted speech pathologist in Jacksonville, Florida, she went to a crowdsourcing campaign populated with video clips of people with aphasia, answering what an aphasia center would mean to them, when they didn't have one to go to. Then, that led to starting the Brooks Aphasia Center. And of course, my own story is as a panicked daughter, who only saw a dismal life ahead for my father, and frankly, an overwhelming life for me. So the first thing I did was call around to get advice on who was one of our region's most respected SLPs. Over and over, I was given the name Beth Crawford. And so it was Beth and I on the original staff, and Beth remains the program director today. Ellen Bernstein-Ellis  18:00 That's fabulous to have that type of continuity and partnership. Kathryn Shelley  18:04 Absolutely. And then at the very beginning, the other person that's from that original staff, is Shun Kelly. She came on board as a CNA in our earliest days. All three of us are still there, 20 years later. But the startup stage of a new program is so often started by the people who are deeply affected. And, you know, there's a strong sense of ownership and often entrepreneurial staff emerges from the founders. So your nonprofit board of directors in those early stages is often more of a programming board, consumed with all the details of delivering service and creating those services.  Ellen Bernstein-Ellis 18:49 Okay, so that's what the startup looks like, or the infancy stage. Let's move on to adolescence. Kathryn Shelley 18:56 It can be a little rocky, like the usual stage. When you move further into the adolescent stage, the conversations, of course, have evolved to how to ensure the well-being and the longevity of the organization. For a nonprofit, that's the stage where recruitment needs to happen to transition from the founding programming board to a governing managing board. This is where I've seen organizations falter and get stuck at this stage if their leadership team remains homogeneous. Even more so if staff isn't equipped or unable to dedicate the time needed for financial well-being. This is where expanding to experts in fund development, social and broadcast media, and corporate and healthcare leaders can really open new spheres of expertise and influence. Then of course, I'm thinking about if you are housed within a university setting, fundraising people are typically already in place within the Office of Advancement. Of course, that's where you're going to really keep that relationship, hopefully, top of mind. You are supplying good stories of the impact that you're making, so that the advancement office team is able to communicate those stories as they're doing fundraising for the university and your program. Ellen Bernstein-Ellis  20:41 How about moving on to the mature stage? Tell me a little bit about that. Kathryn Shelley  20:49 So yes, so the mature stage is where the governing managing board transitions to a true governing fundraising board. If you've already brought in a variety of skill sets in the previous stage, then it's more board members with high influence that are really more easily recruited. It's important to also keep the advancement officer with those news stories, and to keep your board just inspired with the stories of what you do. Ellen Bernstein-Ellis 21:26 If you happen to be an SLP, who is new to these types of concepts, is there a resource you can recommend to learn more? Kathryn Shelley 21:37 Absolutely, there's so many. I have to say that, at heart, I'm an introvert. Just the thought of asking for money makes my palms sweat, and it just feels rude.   Ellen Bernstein-Ellis 21:51 Okay, I have sweaty palms too. Kathryn Shelley  21:55 But here's the thing. There are so many learning opportunities out there. I've taken advantage of so many that have been provided in our region, and that I could find online. Now, of course, Aphasia Access is full of people who have started small to large programs within all types of settings. Ellen Bernstein-Ellis  22:17 That's a great point. And that's part of the strength of that community. For sure. Kathryn Shelley  22:21 Absolutely. And I can tell you that even at the Aphasia Access Leadership Summit, this March, there's a roundtable session called “Show Me the Money”. There's a community of people, speech pathologists, you know, all waiting for you. Then, also, Aphasia Access is launching a new mentoring program, and it's a great place to get one on one advice about all kinds of topics. That's within Aphasia Access. Then I would suggest searching the internet to see if there's a Nonprofit Management Center near you, because they're scattered across the country. They are a treasure trove of local resources. Importantly, they typically have a foundation search directory available to search funders by state ,region or interest area. They're a great local resource. Lastly, I'd recommend two things, the National Council of Nonprofits, and BoardSource, both premier organizations with lots of resources. Ellen Bernstein-Ellis 23:29 That's great. You mentioned local resources and I'm sure some of these have great online resources to support and get you the knowledge you need to start this process to successfully implement these new programs, whether they're small or large scale. In terms of capacity building, when we had our planning meeting, you mentioned something that really resonated with me and I want you to bring that back up. It's about expectations and time. I was wondering if you would share that with the listeners? Kathryn Shelley  24:07 I've had such good fortune to come to know speech pathologists, just top of the line people wanting to change the world. I know how hard you all work and you all are in the life transformation business, helping people with complicated lives. It seems to me unrealistic to expect the same people running programs to also carry the major weight of fundraising, because what I know is that grant applications and a diversified fundraising strategy are a specialized skill set that can certainly be a full time job. Lots of foundations offer what they call capacity building grants. I would suggest prioritizing the cost of a skill development person, on contract or on staff as early as possible, that will really free you up to tend to the people and create the programs that you're trying to create. Ellen Bernstein-Ellis  25:13 I think you're speaking to the “it takes a village” model.  Kathryn Shelley  25:19 So, absolutely and there's only so many,many hours in the day, right? Ellen Bernstein-Ellis 25:23 Well, let's then talk and offer our listeners some tips for implementing financial sustainability best practices, because I know that's really important to you. Where would you like to start? Share a best practice and then a tip to go with it. Kathryn Shelley  25:38 Okay, so always, the first best practice, in my mind, is capturing the human story. And the tip I would offer, especially in the age we live in, is to make sure you're sharing the real plight of people with aphasia in their own words, because it helps others understand the impact of your dream, instead of just feeling like you're there begging for dollars. So take out your cell phone, ask people with aphasia and their loved ones, what it was like before you came along, how their life has changed, or would change if they had-- fill in the blank-- the aphasia friendly book club or an aphasia camp or the program at that university. Video now is so low cost it's really a level playing field for anyone wanting to launch a dream. So take those videos and then strategize where best to share those stories. Ellen Bernstein-Ellis 26:37 Well, that's a real doable tip, I think. And I want to recommend to our listeners, just visit the Aphasia Center of West Texas website, where you feature some compelling member stories. And do you have any lessons or tips about how you selected those stories? Kathryn Shelley 26:55 Not so much about how we selected them. I remember one time, we literally just set up the studio, we did hire a professional videographer, but we just hired him for two and a half hours. And then we asked anybody that wanted to come in to just have a seat. And we asked them about life before us and what difference we make. What spontaneously came out, in gestures, we of course, had some aphasia friendly tools sitting there if they needed those, but it's so powerful, what people will communicate if just given the chance? Ellen Bernstein-Ellis  27:39 Well, I think the first time I went to your website is because Audrey Holland said that everybody should listen or watch Ann's story. I think that's still up on your website. Is that right? Kathryn Shelley It is. Ellen Bernstein-Ellis So Ann's story. Kathryn, would you like to share another best practice? Kathryn Shelley 27:57 The second one I always think of is to utilize your regional resources. A tip is to find the Community Foundation closest to you. There are, I know, over 700 scattered across the United States. And my understanding is that something similar exists in a lot of countries. So in our country, a Community Foundation is a public charity that typically focuses on supporting a geographical area. They support local nonprofits and educational institutions. If you're a university, it would be through the Office of Advancement because that usually is a 501 C3 arm of a college or university. Whether you're going with someone or setting up the appointment yourself, the main point is that the Grants Officer at a Community Foundation wants to talk to you, they really do. This is their mandate, to fund new endeavors and sustain good causes in the community. So they have donor advised funds, endowments, scholarships, field of interest funds, giving circles and more. And they're all about making good things happen, especially for marginalized populations, like people with aphasia, Ellen Bernstein-Ellis  29:18 Right, that's great to have something tangible like that, that we can find in all of our communities. Do you have a third best practice you can share? Kathryn Shelley 29:27 Sure, the third best practice I think, is to create a strategy to continually expand relationships and the possibility of donors. It's really about beginning relationships, not knowing where they might lead. So for the Aphasia Center of West Texas, we host what we call “Talking and Tour” three to four times a year. We have chosen after people get off work before they go home, as a happy hour type event. They know from the flier that we will not be asking for money. We do show people a video featuring a variety of our members with aphasia sharing the impact of our services. It's around eight minutes long. And then our executive director Kitty Binek, shares about our events, a bit about our program, our board of volunteers. We make sure that we invite key people in town, such as realtors, ministers and rabbis, financial planners, and business people. Our board is responsible for bringing guests as well. It's really a place to cultivate a beginning relationship and an awareness of aphasia and what we do. We've certainly gained volunteers and donors in the process, but regardless, we find people are really inspired when they leave.  Ellen Bernstein-Ellis  30:55 I think you're pointing out the importance, that's in the literature on financial sustainability and healthcare innovation, of identifying your champions. That is an element that seems to be mentioned in numerous articles. You have to find the person who's motivated to support your program, whether you are at a university or community nonprofit. I remember an early episode with Janet Whiteside, Episode 17. She spoke about how the dean of her university asked her to share her dream. He wanted to know what it would be and then when he heard it was about building this Aphasia House, he was committed to raising the funds that would open the doors to this dream. That was just so inspirational, that type of partnership and championship. Any tips around identifying your champions? Kathryn Shelley 31:50 Sure, if I go back to the beginning, like Janet Whiteside and Jodie Morgan, all of us listened to our heart's desire to make a difference. And then we started talking to others. For me, there were a couple of community people that listened to me talk. And I was just talking everywhere I could think. What happens when you start talking, is that the power of good in the universe does open doors. In addition, you find the dreamers who came before you. So Aphasia Access, and the Aphasia Institute are great places to find community. But if you start talking in your own community, it really is contagious. I do think that the world does start opening up to you, Ellen Bernstein-Ellis 32:47 That's really inspirational advice. It just really goes to the heart. And I really appreciate this conversation today, because fundraising and finances can be very scary and today, you've made it feel so much more doable--lead by what's in the heart, and I really appreciate that. So thank you. Is there anything else you haven't had a chance to cover that you just wanted to share with the listeners? Kathryn Shelley 33:15 The one thing that I haven't mentioned that I have used in fundraising, and in populating a request for media or anything like that is I've been using the Aphasia Access State of Aphasia Report. I really am not trying to continually go back, but it is unlike anything I've ever seen. Instead of finding statistics, and all kinds of things in all kinds of places, all those stories and statistics, so much of what we all need to populate grant proposals and give them media sound bites is all in there. It's so worth it. Ellen Bernstein-Ellis  34:00 I personally have also had an amazing experience with that as a resource for multiple tasks. And I just want to let our listeners know that recently in December, I think it was episode 96, we actually featured Nina Simmons-Mackie and Jamie Azios, telling us about how they're updating the report and what it's going to look like next. That is absolutely exciting. I am so grateful that that will soon be in our hands as well. So thank you for bringing that up. It's time to wrap up this episode. But I must ask you one more thing, Kathryn, and this is a fun one for me. If you had to pick only one thing we need to achieve urgently, as a community of providers and professionals, what would that one thing be for you? Kathryn Shelley  34:50 I think that's easy. For me, I say this with the greatest respect, but I do think it's diversification. It really is. Is my observation over these 20 years that if the condition of aphasia is going to become a household word, and if services are really going to reach the people who need them, then we must take our passionate storytelling selves and invite experts in marketing and fundraising, broader healthcare and community leaders who have the expertise and can help open more doors to other communities of influence. Ellen Bernstein-Ellis  35:29 That sounds really important, easier, maybe easier said than done, but absolutely essential. So thank you. Thank you for being part of the podcast today, number one and number 100, Kathryn.  Kathryn Shelley  35:42 Thank you so much. Ellen Bernstein-Ellis 35:42 Our pleasure. I'm gonna thank our listeners as well. And for references and resources mentioned in today's show, please see our show notes and they're available on our website, www.aphasiaaccess.org. And there you can become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy that Kathryn described at the start of the show. And if you have an idea for a future podcast episode, email us at info at aphasiaaccess.org For Aphasia Access Conversations, I am Ellen Bernstein-Ellis, and just thank you again for your ongoing support of Aphasia Access References and Resources Aphasia Center of West Texas, https://aphasiawtx.org/ Aphasia Anecdotes including Ann's story (from website) https://aphasiawtx.org/about-us/ Brooks Rehabilitation Aphasia Center: https://brooksrehab.org/services/aphasia-center/ Aphasia House, University of South Florida: https://healthprofessions.ucf.edu/cdclinic/aphasia/ State of Aphasia Report, Aphasia Access: https://www.aphasiaaccess.org/reports/ Board Source, https://boardsource.org Nonprofit Management Center, https://www.nmc-pb.org/resources National Council of Nonprofits, https://www.councilofnonprofits.org/ Nonprofit Life Cycle, https://speakmanconsulting.com/resources/nonprofit-lifecycle-matrix.pdf      

Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Katie Strong and I'm  a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Dr. Jytte Isaksen. We'll be talking about Making Communication about Healthcare Everyone's Responsibility: Communication Partner Training for Health Care Professionals Jytte Isaksen is an associate professor at the Department of Language and Communication, University of Southern Denmark in Odense, Denmark. She has a background as speech and language pathologist. Jytte lectures in the speech-language pathology and audiology programs in evidence-based practice, qualitative research methodologies, neurogenic communication disorders including aphasia, and other clinical subjects. Jytte's research is centred around communication with people with aphasia, for example communication partner training of health professionals, but she is also interested in outcome evaluation of aphasia therapy, involvement of people with aphasia in research, and supporting access and services for people with aphasia in low- and middle-income countries. A current research project of hers is about families living with aphasia and how to make sure that they get support throughout the care pathway. Jytte is a part of the international research group Collaboration of Aphasia Trialists, where she serves in the executive committee and as chair of the working group Societal Impact and Reintegration.     In this episode you will: Learn about the importance of trained healthcare providers who can communicate with people living with aphasia. Be introduced to the KomTil method of training developed in Denmark. Be inspired to consider how you might incorporate communication partner training with healthcare providers in your community. Katie: As we get started, I wondered if you could you tell our listeners exactly what is meant by communication partner training. And why is it so important for health care providers?   Jytte: Thank you so much, first of all, Katie and Aphasia Access for inviting me to talk about this topic that is very close to my heart. I think that conversation communication partner training, CPT, is defined in different ways in literature. But one of the definitions that I usually stick to is that CPT is an umbrella term that covers different types of complex interventions for communication partners of people with aphasia, and possibly the person with aphasia themselves. And why is it important to healthcare professionals? I would say it's important for everyone working with a person with aphasia because you need to be able to communicate with them. No matter if you are a nurse, or a physiotherapist, or anyone in the healthcare system. The secretary on the ward that needs to communicate with people with aphasia. You need to be able to express yourself in a way that people with aphasia better understand you, but also support them in their expression so that they can say what they really want to say, or some of it at least.   Katie: Absolutely. I completely agree. Being able to have conversations about your healthcare is just so important. So important. What role do speech-language pathologists play in the training of healthcare professionals?   Jytte: We play a very important role. I think it's a way of opening up participation in life, including in healthcare, for people with aphasia. Since we are the professionals especially trained in being able not just to treat, but hopefully also to communicate with people with aphasia, I think we as a profession are a good way into that. But I will later in this podcast talk about how other healthcare professionals can also be CPT providers. We have tried to do that in the project I will tell you about later today.   Katie: Yeah, that's so exciting. I'm really excited to talk about your work. I was wondering though if you could tell us how you got interested in the area of CPT.   Jytte: Yeah, that's a good question. Mainly because so many clinicians in Denmark were interested and still are interested in CPT. I think it was back in early 2000, some of my clinical colleagues went to the Aphasia Institute in Toronto, Canada and got trained by Aura Kagan and colleagues in the Supported Conversation for Aphasia, or the SCA program. They got back to Denmark, wrote a little bit about it, told a little bit about it, but it didn't really get that traction in the beginning. Maybe we weren't ready for that. I was more or less newly qualified at that time.   An evaluation of the Danish neurorehabilitation system was written up in 2011 and my now retired colleague, Lise Randrup Jensen from University of Copenhagen, was invited to evaluate and show the evidence around everything related to aphasia. What she enhanced in that evaluation was that there was moderate evidence that healthcare professionals trained to be better communication partners could have a different impact on people with aphasia's participation. That was picked up mainly at that time by one medical doctor. I should say, this is my interpretation of everything. That medical doctor or consultant in neuro, I think it was acute neurology, she said “I want to have this implemented in this hospital. So, no matter who is working with people with aphasia here should be trained to be better communication partners.” So, I think they are very brave. They employed a clinician that was already trained at the Aphasia Institute, and they employed Lise as a researcher on this part-time. Then they started to train all their staff to do research on it and then it really started to get some traction. They not only wrote at some point a research article, but they were also invited out into different health professional communities. They wrote in the nursing magazine, and the physio magazine, and so forth. All of a sudden, so many people around the country knew about SCA specifically, and went back to their SLP asking, “Can we be trained in this method?” And, somehow, I got interested. It was very natural that I picked it up together with Lise and then we started to do research together.   Katie: It's fantastic, the energy, it's such an the organic way that it came about. That seems really authentic and people being interested. All of the different disciplines. Showcasing and getting work out in interdisciplinary audiences is so important. Yeah, I love that story. Thanks for sharing. So, I'd like to get into a little more of the details. You've taken a lead role in training healthcare providers in Denmark, and I was hoping you could talk us through a little bit about how the training was developed and the philosophy behind your training.     Jytte: Yeah, as I mentioned previously, it was a lot of SCA going on, and there still is in Denmark. So many of us, Danish clinicians and researchers, have been to Toronto and gotten SCA training. But we got back with a material developed in a Canadian context with English speaking videos, and we had to do some adaption. But it was hard to know what could we change and still call it SCA. So, at some point, I was invited into a project at the local hospital in Espia, where I live on the west coast of Denmark. It was really a nurse at the acute ward there that also had read about SCA, and she went to one of the project people there saying, “I think we should be taught some kind of CPT.” And then it started.   So, our project man, he was very great at getting people together. Very funnily, he knew what SCA and CPT were because his daughter studied to be an SLP and wrote her master thesis about it. Lots of clinicians from that hospital, from the neurorehabilitation unit that the acute hospital usually would send their patients to, and then to the five surrounding municipalities that got the people with aphasia out where they lived afterwards. They got together, some researchers, me as an SLP researcher, and a colleague from public health. It wouldn't be right to say we were doing something new. So, we were standing on the shoulders of the giants, like Aura Kagan and Nina Simmons-Mackie, and other people that have worked before with CPT. We invited healthcare professionals from all stages throughout the care pathway, but definitely also people with aphasia and significant others. At first, we started with studying, “What is going on here? How do you communicate in this area of Denmark? How does the transfer happen between hospitals and from hospitals out into community care?” We got some ideas on what could be better. But then we again invited people in to do some co-design and co-development with us. So, that was how it all started. But you also asked about the philosophy, Katie.   Katie: That's alright. Well, before we get into that, I know many of them might, but I'm not sure if all of our listeners know what you mean by co-design.   Jytte: Yeah, I'm not sure that I know that either, Katie.   Katie: Well, how are you thinking of it?   Jytte: I claim I use co-design in many of the things I do. By that, I mean we invite all of the relevant stakeholders in. Well not all, but at least some of the relevant stakeholders for whatever we were going to develop. In this case, it was a CPT program, but it was also some support materials, and we developed a few other things I can talk about later. We have done workshops with them [stakeholders] asking them different questions, very open questions in the beginning. Our overarching goal from the beginning was not to create CPT, or communication partner training. It was to create cohesiveness throughout the healthcare system. It would be a good idea, we assumed, that all the way from when you were hospitalized until you finished your treatment out in your own home or in the community, that you would meet staff that knew what aphasia was, that knew how to communicate with aphasia, that used some of the same support materials. So, we asked them very openly, “How could that look? What is needed for that to be a reality?” We were quite sure from the beginning that some training had to take place. So, really, the CPT program called KomTil that we developed was a part of answering that more broad question.   Katie: Yeah, it's really a beautiful way to get something to work. I think that's why it's been so successful in your country, because you really brought it in from the ground up. People are truly interested, and then getting input from the health providers who are going to be using it, and the stakeholders, people with aphasia, family members. Thank you for sharing. I think that it's certainly something that's easier said than done, and you're showing us that it can be done, so thank you. So, did you want to remark on the philosophy?   Jytte: Yeah. So, I'm sitting here with the sheet in front of me. I think you will all be able to have a look at it and Katie will talk more about that later, where you can find it. But we have what we call our strategies and tools. There is a drawing, and it really looks like a dart board. There is a bullseye in the middle, and that is what is really most important to this training. It's also important for me to tell you that it has been people with aphasia and their family members that have told us what they found was most important. That strategy is called “person-to-person”. With that, we mean that in any kind of healthcare contact, it's important that both the person with aphasia, but also the healthcare professionals, remember that it's two humans really talking together. It's not about if you have aphasia or not, or if you are a nurse or not, it's about two people having to communicate. So, you need to try to work on creating a relationship. Be respectful to each other coming from different systems and with different points of view. The last point is to be honest about what you don't know or what you don't understand. When you don't understand what the person with aphasia is saying, instead of pretending, it's okay to say, “I'm sorry, I don't understand what you're saying.” So, that's the bullseye of our figure.   The next circle around the bullseye is parted into two, and one is called “your court”, like you are part of the tennis court. Those are the strategies that you can do yourself without making too much effort. So, you could slow down your speech rate. You could have a natural tone of voice, knowing that you are speaking to an adult competent person. Emphasize key words in your oral speech. Have short sentences, yes-no questions, one question at a time. So, that simple communication advice that many of us are using with clients, but also advise other people to use with people with aphasia. Also take your responsibility in the communication because you know, or are being taught, in the CPT program that you really need to not control but be responsible for moving forward the conversation and providing support. Then the other half of that middle circle is “know your co-player”. So, know who is on the other side of the court. Try to think about, “Who is it that you are speaking with? How must it be to have aphasia and not be able to express yourself in the way that you would like to feel that you are competent and intelligent?” It's as Aura Kagan always says, “the aphasia is masking who you are, and your competencies”. Make sure that there is enough time for the person with aphasia to give their response if you ask a question, or if they want to formulate something. Also, make sure that you understand each other. Try to check if, “What I understood you said was this and that. Is that true?” or “What I tried to say before was this and that, are you with me?”   Then there is the outer ring, divided into four parts and we call them “strategies”. They may be extra. Some of them are quite natural in communication and some of them are not so much. One tool could be “pointing”, so be more intentional about when you point at your body, towards things, and at the person you're communicating with. The next one is also rather natural. Try to use “facial expressions, gestures, body language”, and be intentional about it. Like right now as we are talking Katie, my hands are everywhere but it doesn't mean anything. But I could use my hands to be more precise in underpinning what I'm saying, and the same with my facial expression. Then the last two tools are the ones that are a bit more unnatural. “Write down keywords”. So, have pen and paper ready and write the keywords in whatever you were talking about. We're talking about tools, Katie, then I would write down tools on this sheet of paper. You could also use keywords if you want people to point at different choices you give them. So, it can work as a support for what you say, but it can also be something you write down based on what the person with aphasia says to make sure, “Have I understood you right?” In the written keywords section, we also have drawings. So, we could draw to show something more visually. The last one is “pictures” or any kind of pictorial support. Especially the last two things, written keywords, drawings, and pictures, need some kind of preparation. You need to have pen and paper with you. You need to be willing to draw. Many people say to me, “But I don't draw, and people can't see what I'm drawing.” Also, the pictures. Either you need to prepare the conversation and have pictures with you, or have a tablet or a smartphone, or have physical pictures that you can point at and talk about. So that was a long explanation about the KomTil.   Katie: Beautiful. So, this KomTil graphic will be in the show notes. The reference will be there as well as the articles that Jytte's talking about, so please check them out. I think brings [these strategies] to an intentional and simplified way. It really makes it make sense, breaking those things up into different areas. Wow, fantastic.   Jytte: Can I add one thing, Katie?   Katie: Of course.   Jytte: The idea with this model was also like, “Could we start in the middle, and actually solve or bridge over some of the communication challenges between us and the person with aphasia by just really being present and trying to build a strong relationship?” Or maybe a little bit more is needed. Maybe I need to slow down and do a little instead of starting in the outer circle with drawing or pictures because maybe it's not needed. You should use it if it's needed. If not, no need to do it.   Katie: Yeah. That's so important. I was actually earlier this week having a conversation with our local aphasia support group. We were talking about how to talk with your health care providers, and I think they would agree that being treated like a person and having that relationship is really the place to start. Well, you all have not only developed this, but you also are training different healthcare providers, speech pathologists, or other disciplines on how to train other people on communication partner training. So, could you talk to us about what's important about consistency in this program? Also, how does somebody become a trainer?   Jytte: Yes. So as SCA, that also has a train-the-trainer model, we have made the same. Because it's really not good to develop something and then keep all the knowledge within that small group. We wanted KomTil to have its own life, so that people could get trained as trainers and then go out into their workplaces and train their colleagues. That would also mean that you would have KomTil trainers in many places with specific competencies that could underpin implementation, train new staff, do some refresher training. So, that was really the intention from the beginning. For this to be sustainable, we need a train-the-trainer model. This is then a little bit different compared to most other CPT programs. We have chosen together with the co-designers we had in the beginning that it was not only SLPs that could be KomTil trainers. Our very first group of KomTil trainers when we were still a research and development project was a good group of SLPs, but also OTs and PTs. We had a few nurses, we had a nursing assistant. I think that is almost what I'm most proud about, especially when I look at those trainers today. They got trained, I think it was back in 2018 we did that. Here where I live, the local hospital is just down the road. When I speak with that nursing assistant and nurse on the acute neuro ward and listen to them still doing the training, still inspiring their colleagues, I get inspired, and I get very proud as well.   Katie: What a beautiful thing. I mean, that's just oh wow!   Jytte: Yeah. Also, I guess it's different because in the beginning, it was very much assumed you had to know a lot about aphasia to be able to train CPT. But I think we have cut it down to a model. Yes, there is information about training, but what is really needed in order to be a good communication partner is not necessarily a lot of knowledge about aphasia. Many of them know something because they work with people with aphasia, but it's a lot about how best to communicate with people with aphasia, and then training in it. So, really just practice, practice, practice. We have continued using that model. At the moment, I'm training a group together with a colleague in Iceland online. I also train with another colleague, some Danish healthcare professionals, and again, not just SLPs. We have a nursing assistant, nurse, and special education teacher onboard in our current group. So, the model is like that.   You are also asking, “How can you become a KomTil trainer?” At the moment, we have been charging a little bit here in Denmark when we have trained people. The group in Iceland is my second group outside the country. My second online teaching experience and the first teaching experience was a very mixed group. I got contacted together with Suzanne Beeke, who works with CPT for family members, by the World Federation of Neurorehabilitation because some, not necessarily only SLPs, also medical doctors and neuropsychologists, were interested in receiving training. That was right ‘bang' in the middle of the pandemic, so we met with them sometimes online. Well, they're all over the world, so we had to do that anyway. Then we agreed to make an online KomTil training for them. Now there are KomTil trainers in Egypt, Colombia, Serbia, Austria, and Greece. That was a crazy experience, but very fun. Some of the countries have really started using this and have trained their colleagues.   Katie: Wow, what an impact. What an impact. So, how many hours is the training for the train-the-trainer? What kind of investment of time do they put in?   Jytte: So, when we do the face-to-face package here in in Denmark, it's four full training days. We usually see them once a week for four weeks and would usually prefer a two-week break in the middle because we would like them to go out and use the KomTil strategies and tools themselves as well. When we have been training online, it's not just the training, we're also talking to them about how best to take a tool from one cultural context and not just do a linguistic translation, but also do a cultural adaption. But you can't meet for four full days on Zoom, you would go bananas. So, what I do with the group from Iceland at the moment is meet with them five times spread over five months. We expect them to read more and be a bit more proactive in acquiring this program because we can't be face-to-face so many hours online.   Katie: I love that there's some adaptability in that. That's great.   Jytte: What they then learn when they become a trainer is to give what we call the basic training. The training package is developed for their colleagues then. It's a two times three hours training. Again with a two-week break in between so you can go out and do some practice from time one to time two. A part of the train-the-trainer program is also adult learning strategies, implementation, implementation science, and I think we change a little bit every time we do this. Because we are not there yet, and we probably will never be. But what we hear from our trainers is, “Oh, it's so hard to get out and implement this, we really need more knowledge than that.” So that's really what we are very much working on at the moment. To be a bit more sharp in how to talk about implementation and how to get some good strategies out to people that need to not just convince their managers to spend time, but also get the trained colleagues to use the strategies that we taught them. And not just for the first month, but for the rest of their working career with people with aphasia.   Katie: Absolutely. Well, this all just sounds fabulous. And it sounds like it's working. But how do we know for sure? Have there been any measures that have been developed for the training?   Jytte: Yeah, we did develop some measures. Not exactly as a part of this project because so many clinicians here in Denmark also use SCA. They still should do that, I think it's a great program as well. Together with Lise from University of Copenhagen, and Iben Christensen and students we developed the Health Professionals and Aphasia Questionnaire, HPAQ, and it has been tested. It's a 16-item, self-report questionnaire. It can be given pre-post training to the participants (i.e., the health care professionals). It's really measuring if they think that they have become better. “Do I know what to do when I don't understand a person with aphasia? Do I know what kind of support I have in the system? Do I know what to do when things go wrong?” But it is measuring it from one side. We still need outcome measures or tools to measure the exact conversation, but that could be an observation tool. Many of you know that Aura Kagan developed that for her SCA training. There's the Measure of Support in Conversation and Measure of Participation in Conversation.   Katie: Yeah, we can put those references and the HPAQ in the show notes too if people are interested in checking that out more.   Jytte: And then we need an outcome measure for people with aphasia. But of course, you can't measure that “you have been speaking with staff that was not trained, and then they went on training, and now they maybe speak with you in a different way” because people with aphasia would be hopefully long gone from that hospital or wherever the training took place. But it would be nice with an outcome measure measuring the communication accessibility and the level of support. The Aphasia Institute has done the different CAMS measures (the Communication Accessibility Measures in Stroke), I think it is.   Katie: I believe so too, yeah.   Jytte: There is a version for frontline staff, there is a manager's version and there's also a version for people with aphasia, but it's very lengthy. And it has not been developed for this purpose, so I think there's still a gap there to be filled out.   Katie: Yeah, but some great things in the works and the HPAQ currently available. Fantastic. Well, I know in some of our previous conversations that this original project had some grant funding, but I believe that's ended now. But the program is still running today, and as you've been talking about, it sounds like it's growing, which is amazing. Can you share how the project has been sustained?   Jytte: Yeah, I have already said a little bit about the nurse and the nursing assistant down the road. So, we have those KomTil trainers from the first group of trainers. We have the training course we are doing face-to-face at the moment in Denmark, it's our third one. Hopefully we will be able to offer those training courses in the future as well. I know I'll be giving one with a clinical colleague later this year. Here, I'm connected with University of Southern Denmark, and I teach future SLPs. They have an elective course in our master's program that they can choose. They get the train-the-trainer training if they choose that course. So, hopefully lots of clinicians will come out here. The first 25 came out last year, and I'll repeat it later this year in the fall.     Katie: Fantastic. Well, you talked about that this is really something that started in Denmark, but that has grown into a more global effort. I know you recently had a publication in 2022 in International Journal of Speech-Language Pathology (IJSLP) with some colleagues that aligns with the Sustainable Goal Development 17. Can you tell us a little bit about that? I'm not sure if I know all about that, and I'm not sure if our listeners do, but talk to us about the importance of that.   Jytte: Yeah. So, the Sustainable Developmental Goals 17 is about partnerships, especially partnerships between developed countries and developing countries. That was really the idea when we first got in touch with the World Federation of Neurorehabilitation. I forgot to mention India, actually, when I mentioned all those countries. It was India, Egypt, at that point, also a physician from Kazakhstan. So, different developing countries where the SLP services are not necessarily that good, and that are maybe even more dependent on other healthcare professionals knowing something about aphasia and being able to communicate with people with aphasia. Maybe there are not at all or very few SLPs at hand. So, that was really what the project was about at that point. Then we ended up sort of sticking the Sustainable Developmental Goals to the whole framework of the work we have done because it was a special issue (in IJSLP) on the UN Sustainable Developmental Goals.   Katie: Wow, that's just amazing. As I'm listening to all of the things that we've talked about today, really CPT training takes a community effort, right? It really seems like it takes a lot. I'm sure a lot of our listeners, and myself included, are thinking, “Wow, this is a really big effort. I'd love to see something like this happen in my own community, but it just seems so big.” Do you have any tips that you could share with clinicians or researchers who are listening who might be interested in starting something in their own facility or region?   Jytte: Yeah, I could say many things. First of all, I think I will say “just do it”. I mean, the whole story I have told here is that in Denmark, it has all been very grassroot-led. It was clinicians thinking this was interesting, let's go to Toronto. It was clinicians asking managers or their colleagues, “Why don't we teach you some strategies for you to be able to better communicate with people with aphasia?” And get some training. I know there's online training available, the Aphasia Institute. Get in touch with me maybe to see what we could do together. I think there are several people that could provide some training to you. Then go out, find your people that would advocate for this as well. Try to tell other healthcare professionals the consequences if we are not able to communicate well with our patients/clients with aphasia. There are so many devastating consequences, as many of you would know already. Also, when we just look separately at the healthcare system. Like we know that people with aphasia are communicated with less when they are hospitalized, they are at greater risk of different types of adverse events, they fall more. Maybe they take the wrong medication because they don't understand what we have taught them. They have longer hospital stays, they are at risk to get back into hospital again because of different things when they are discharged home. So many devastating consequences should talk to everyone really, no matter if you are a manager, or if you are the staff on the ground, that you should do this. I'm sure everyone would be a better healthcare professional if they have those strategies and tools in their working toolbox. It's not enough to be a great nurse, you also need to be a great nurse that can communicate with people with aphasia, in order to be a great nurse to that specific group of patients that you're serving.   Katie: Absolutely. Well, I love this! You're inspiring. And the “Just do it.” I hear your message also in that we need to get out of our offices and really go out and start collaborations with colleagues. Beautiful.   Jytte: And I know many people do that already. Value that, but also spread it more. I know of many people training ambulance drivers and all sorts of staff. I think this could go on at so many different levels of healthcare and community.   Katie: I agree. You've got my wheels turning too. I spoke last month to the Michigan Stroke Program, and they are primarily frontline providers and a lot of EMTs, and so it makes me think a little bit about that continuum of care. I love it. Well, as we wrap up, any final thoughts you'd like to share with our listeners?   Jytte: Oh, that's a good question. I have already said “go out and do it”. I'm sure that so many of you support communication with people with aphasia every day. So many of your colleagues are already watching you when you do it. So, try to be a bit more expressive about that and say, “This is what I usually do, could you maybe try to do this?” It doesn't need to be complicated. That's really what we have tried to build into this model that I have talked to you about today. Don't start with pictures and keywords if you think that is complicated and not natural for your communication style. We can get most people to ask yes-no questions, or sit down, have a quiet conversation, and be respectful and slow down the pace. As we have said many times when doing this training, this is not rocket science at all. Many of us are doing this but teach everyone you meet on your road when working with people with aphasia to try to do some of the same things.   Katie: Absolutely. Well, Jytte, it's been a fabulous conversation. Thanks so much for joining us today.   Jytte: Thank you, Katie. It has been so nice to be able to talk about this.   Katie: Lots of food for thought. So, listeners, check out the show notes. I'll have all the links to the articles and the KomTil visual that you'll really want to make sure you take a minute to download and some other things that we talked about during today's conversation.   On behalf of aphasia access, we thank you for listening to this episode of Aphasia Access Conversations Podcast. For more information on Aphasia Access, and to check out our growing library of materials, go to www.aphasiaaccess.org. And if you have an idea for a future podcast topic, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.         Contact information for Jytte Isaksen – Email jisa@sdu.dk  Twitter @jytteisaksen   Resources Aphasia Institute - Supported Conversation Training – https://www.aphasia.ca/communication-tools-communicative-access-sca/ Aphasia Institute – Communication Access for Measures for Stroke (CAMS) https://cams.aphasia.ca/ Aphasia Institute- Measure of Skill in Conversation (MSC) and Measure of Participation in Conversation (MPC) https://www.aphasia.ca/health-care-providers/resources-and-tools/rating-scales/ Bertram, M., Isaksen, J., Toft, L. E., Olsen, A. M., & Breckling, M. (2021). Evaluering af projekt Forløb for borgere med afasi samt afrapportering af implementeringsopfølgningen KomTil – fra udvikling til drift. Unpublished report from University of Southern Denmark. Cruice, M. Johansson, M. C., Isaksen, J., & Horton, S. (2018). Reporting interventions in communication partner training: A critical review and narrative synthesis of the literature. Aphasiology, 32(10), 1135-1166.  https://doi.org/10.1080/02687038.2018.1482406 Isaksen, J., Beeke, S., Pais, A., Efstratiadou, E-A., Pauranik, A., Revkin, S. K., Vandana, V. P., Valencia, F., Vuksanovic, J., & Jagoe, C. (2022). Communication partner training for healthcare workers engaging with people with aphasia: Enacting Sustainable Development Goal 17 in Austria, Egypt, Greece, India, and Serbia. International Journal of Speech-Language Pathology. https://doi.org/10.1080/17549507.2022.2145355 Kagan, A. (1998). Supported conversation for adults with aphasia: Methods and resources for training conversation partners. Aphasiology, 12(9), 816-830. https://doi.org/10.1080/02687039808249575 Kagan, A., Black, S. E., Duchan, J. F., Simmons-Mackie, N., & Square, P. (2001). Training Volunteers as Conversation Partners Using "Supported Conversation for Adults With Aphasia" (SCA): A controlled trial. Journal of Speech-Language-Hearing Research, 44(3), 624-638. https://doi.org/10.1044/1092-4388(2001/051) Kagan, A., Simmons-Mackie, N., & Shumway, E. (2018). Revised rating anchors and scoring procedures for Measure of Skill and Measure of Participation in Conversation between adults with aphasia and their conversation partners. Toronto, ON: Aphasia Institute. Retrieved from https://www.aphasia.ca/wp-content/uploads/2020/05/VF-MSC-MPC.pdf Kagan, A., Simmons-Mackie, N., Victor, C. J., & Chan, M. T. (2017). Communicative Access Measures for Stroke: Development and evaluation of a quality improvement tool. Archives of Physical Medicine and Rehabilitation, 98(11), 2228-2236.e5. https://doi.org/10.1016/j.apmr.2017.04.017 Randrup Jensen, L., Fromsejer Heiberg, R., Isaksen, J., Berg-Beckhoff, G. (2021). Psychometric properties of the Health Professionals and Aphasia Questionnaire (HPAQ): a new self-assessment tool for evaluating health communication with people with aphasia. Aphasiology, https://doi.org/10.1080/02687038.2021.1900534 Simmons-Mackie, N., Raymer, A., Armstrong, E., Holland, A., & Cherney, L. (2010). Communication partner training in aphasia: A systematic review. Archives of Physical Medicine and Rehabilitation, 91, 1814-1837. https://doi.org/10.1016/j.apmr.2010.08.026 Simmons-Mackie, N., Raymer, A., Cheney, L. (2016). Communication Partner Training in Aphasia: An Updated Systematic Review. Archives of Physical Medicine and Rehabilitation, https://doi.org/10.1016/j.apmr.2016.03.023       Acknowledgements – A special thank you to Serena Chase from the Strong Story Lab at Central Michigan University for her assistance in the transcription of this episode.       Please note: Be sure to scroll down to the next page to find the KomTil visual and citation.   

Welcome to this edition of Aphasia Access Conversations, a series of conversations about topics in aphasia that focus on the LPAA model. My name is Janet Patterson, and I am Research Speech-Language Pathologist at the VA Northern California Health Care System in Martinez CA. These Show Notes follow the conversation between Dr. Chaleece Sandberg and myself, but are not an exact transcript of the conversation. Dr. Chaleece Sandberg is Associate Professor in the Department of Communication Sciences and Disorders in the College of Health and Human Development at Penn State University.  She directs the Semantics, Aphasia, and Neural Dynamics Laboratory (SANDLab), which focuses on finding ways of optimizing language therapy for adult language disorders, with a primary interest in aphasia. Specifically, work in the SANDLab explores the neuroplastic processes that take place during successful therapy and how to enhance these processes. Additionally, SandLab work explores how cortical reorganization due to aging affects the way we interpret the cortical reorganization that results from language therapy.     In today's episode you will hear about: the importance of impairment-based treatment in a person-centered approach to aphasia therapy, the role of linguistic complexity in selecting treatment stimuli and supporting generalization, how speech-language pathologists can add aspects of counseling to treatment activities. Share Dr. Janet Patterson: Welcome to this edition of Aphasia Access Conversations, a series of conversations about community aphasia programs that follow the LPAA model. My name is Janet Patterson, and I am a Research Speech-Language Pathologist at the VA Northern California Health Care System in Martinez, California. Today, I am delighted to be speaking with my friend and research colleague, Dr. Chaleece Sandberg. Dr. Sandberg is associate professor in the Department of Communication Sciences and Disorders in the College of Health and Human Development at Penn State University. At Penn State, she directs the SANDLab, that is the Semantics, Aphasia and Neural Dynamics Laboratory. Efforts in the SANDLab are aimed at finding ways of optimizing language therapy for adults with language disorders, with a primary interest in aphasia. Specifically, the lab explores the neuroplastic processes that take place during successful therapy and how to enhance these processes. Additionally, the lab work explores how cortical reorganization due to aging affects the way we interpret the cortical reorganization that results from language therapy.   In 2022, Chaleece was named a Distinguished Scholar USA by the Tavistock Trust for Aphasia, UK. The Tavistock Trust aims to help improve the quality of life for those with aphasia, their families, and care partners by addressing research capacity related to quality-of-life issues in aphasia. Congratulations on this well-deserved honor, Chaleece.   Aphasia Access collaborates with the Tavistock Trust for Aphasia in selecting the awardees and is pleased to have the opportunity to discuss their work and the influence of the Tavistock award.   Welcome Chaleece, to Aphasia Access Conversations,   Dr. Chaleece Sandberg: Thank you so much for such a lovely introduction. I'm so glad to be here doing this with you and I'm so thankful to the Tavistock Trust for this recognition.   Janet: Chaleece, as we said, you were named a Tavistock Trust Distinguished Scholar USA for 2022 and join a talented and dedicated group of individuals. How has the Tavistock award influenced your work, both your clinical and your research efforts in aphasia.   Chaleece: So, first of all, I am so incredibly honored to be recognized as belonging to such an amazing group of scholars. These are definitely people that I admire, and I look up to and I want to be more like, and so receiving this award is not only supporting my ability to push some ideas forward that I've been having, but it's also giving me more confidence to go all in and make quality of life, an even larger focus in my teaching and research.   Janet: That is terrific to hear, because I think quality of life is so very important for all of us. We sometimes forget that idea when we get focused on our treatment or specific treatment protocol. In preparing for this interview Chaleece, I read several of your publications, including your work in treatment for lexical retrieval, and the Theory of Complexity. Would you briefly describe this theory and your work in this area?   Chaleece: I'd love to. The Complexity Account of Treatment Efficacy was introduced by Cindy Thompson, who is actually my research grandma, Lewis Shapiro and Swathi Kiran, who was my Ph.D. mentor. What they were finding was that while they were doing the Treatment of Underlying Forms, which is a treatment that supports sentence processing, when you train more complex sentence structures, like object class, something like, “It was the porcupine who the beaver hit”, right, you're going to get generalization to not only other object clefts, but simpler structures, like WH questions, so something like, “Who did the beaver hit?” Using this logic, Swathi started exploring the effects of semantically based therapies for word retrieval and found that training atypical words in a category promotes generalization to typical words in that category. The idea is that you're basically training this wider breadth of information that applies to more items. In the case of typicality, you're training semantic features that are really characteristic of these atypical items, like that “a penguin doesn't fly but swims”, and that you're also training these really typical features that apply to everything in that category, like, “a penguin lays eggs like most other birds”.   In my work, I've extended this logic to training abstract words. Now with abstract words the mechanism of generalization is slightly different. Rather than words sharing semantic features, they share associations. So, we train words in thematic categories, like “hospital” and “courthouse”, where there are these strong associative links between abstract words like “diagnosis”, and concrete words like “doctor”. The reason that it's more beneficial to train abstract words rather than concrete words is because they have a wider range of these associative links, so they can activate more concepts when you get that spreading activation within the semantic system. We've started calling it Abstract Semantic Associative Network Training for that reason, or it's AbSANT for short.   Janet: I think that is so fascinating. It makes sense because you're looking at a way to optimize therapy, which is what the SANDLab is all about. How can we, from a theoretical perspective and with data to support what we're doing, how can we be as efficient as possible in achieving the outcome that we would like to have for a person with aphasia? I think it's a perfect example of theoretically based treatment.   That leads me though, to the next question to say, I love your research. And I love that it's taken however many years and starting with grandma, Cindy and then Swathi, and now you. That's a lot of effort and a lot of work that clinicians don't have. The theory is so powerful, so I'd like to ask you, what are your thoughts on actions that clinicians might take to easily incorporate these treatment principles, or this treatment, into their clinical activities.   Chaleece: I've tried to really consider clinicians and keep clinicians in mind when I've been thinking about AbSANT. One thing that I've done is, I've made absent available for free on my lab website (SANDLab). There's also a tutorial published in Perspectives of the ASHA Special Interest Groups. And the idea is that that's kind of an easy to go to for clinicians. And even though we've only actually used a couple of categories in our research, so we focused on courthouse and hospital, we actually did norming on I think it's 17 categories, thematic categories, like football and holidays. And all of those words are available on the website, I also don't see why you can't create your own categories that are going to be personally relevant for your client.   One of our AbSANT clients that we had in our research study, after they were done, the husband wanted to continue to work with his wife on words for the holidays, actually. And so we talked about it, and he came up with some words in the category Christmas, that would be good targets, and they went off and used it. And it helped. They were very happy.   Janet: Kudos to you, Chaleece, for doing it like this. What you just described, about a person sitting in therapy and using your words and what you had created, and then going off and creating their own with your assistance, that is exactly what I think should be happening, as we think about therapy. That feeds quality of life, that feeds a person's ability to move back into whatever they want their life to be. Kudos to you for making this freely available to clinicians. They don't have to go digging into research papers or into journals to find and to piece together your work, it's there on your website. By the way, the link to your lab and this information will appear in the Show Notes that accompany this recording. So, thank you for that. I appreciate it. And I know clinicians will as well,   Chaleece: I understand being pressed for time, and I did want to make this as easy and accessible as I could   Janet: Chaleece, at the heart of your work in aphasia, as we just mentioned a few minutes ago has been optimizing treatment. One of your research interests supporting this direction, has been examining the neurological mechanisms that underlie behavioral change following treatment. Conducting research on this topic is challenging for many, many reasons. Yet, I think it's very important to aphasiology as we seek to understand the elements of a treatment protocol, and how the brain changes in response to stimulation. So, with that large question and that large research area, what have you learned from your work in this area?   Chaleece: You are right, it is a very challenging area to work in. One thing that is heartening is that my work seems to agree with some of the heavy hitters out there who are doing this work on a much larger scale. I think that in order to really get at the root of these questions, we do need these really large-scale studies across different sites that are going to be able to gather enough data so that we understand fully what's happening. But basically, it seems like no matter how chronic the person is, there is neuroplasticity related to treatment gains. We still don't really have a definitive answer regarding things like which hemisphere is better? Or is increased or decreased activation better? But it's looking like the answer is actually going to be quite nuanced and related to individual variability, which again, speaks to this idea that the more data the better. Luckily, there is a working group in the Collaboration of Aphasia Trialists, or CATS, that's working on this question. I am a part of that group and very honored to be a part of that group and contributing to this work. I do have some results from a pilot study that I did as a doc student. We found that left inferior frontal gyrus pars triangularis, so basically, Broca's Area appeared to be especially important for the AbSANT outcomes. We also found that when we saw generalization from the abstract to the concrete words, that areas that are normally responsible for concrete word retrieval, were being activated after therapy more so than they were before therapy. That's some nice evidence that generalization is actually affecting areas of the brain that are responsible for those items that are being generalized to. I have yet to analyze the data from my current study but stay tuned.   Janet: Oh, we will. I think that there's a large body of data, as you said, from other people who've done larger studies, and lots of people have been focused on this question for a while, and you are as well. It's a bit daunting for clinicians, again, to think about how to wrap your head around the idea and the evidence. We all believe that the brain is changing, but to wrap your head around the evidence that says, “Well, how is this happening?” and, “What can I do that will facilitate it happening a little bit more quickly or a little bit more thoroughly?” So, I realize I'm asking you a speculative question that's sort of out there, but I'm going to ask it anyway. What are some of the ideas from your work that clinicians may find useful to think about on Monday morning, when they walk in to interact with their clients who have aphasia, and their family members and care partners.   Chaleece: I think one of the things that I really would like to underline is don't be afraid to challenge your clients. We actually learn better when we're challenged, and learning is what's going to cause those changes in the brain. Probably the most important thing that I would like for clinicians to take away from my AbSANT work is that it's worthwhile and not impossible to work on abstract word retrieval using a semantically based approach. Abstract words are so important for natural conversation. Training them seems to really help support retrieval of concrete words as well, and so you get more bang for your buck. I found that people, especially those with a little bit milder aphasia who are up for the challenge, really enjoy the metalinguistic discussion, and the chance to defend these really strong opinions that people have about the personal meanings of abstract words. And, again, the most important thing in terms of l the neural imaging in the neuroplasticity is that the brain always has the ability to change. I realize that our clients are later in life, they've had a stroke, maybe they're in the chronic phase of recovery, and they can still show neuroplastic changes. One of my highest achievers, in my study, when I was a doctoral student, both behaviorally and neurophysiologically, one of the people who showed the most neurological changes was 20 years post stroke.   Janet: That's amazing. When you talk about abstract language, it makes me think that so much of what we do, or at least as I look back on a lot of the treatments that we do, single words or visual nouns or concrete nouns, very simple, sometimes we say functional words. But then you step aside and listen to people talk and so much of what people's conversation contains is nonliteral words and abstract words. We don't talk like the words that we're using in therapy, and it makes perfect sense then, the way you're approaching this challenge of aphasia, to try to make your work more like what people with aphasia are going to experience during conversation. It's a big problem and a big challenge, but I think you're up to it, and I'm looking forward to seeing some of more of your work on AbSANT. Especially since it's such a challenging area of work. I appreciate you giving us specific suggestions of things that we might do Monday morning when we see our patients. So, this is not just a conversation and it's not just another academic lecture in how we think about treatment, but it has some very important real world applications for us. Thanks so much for that piece.   I'd like to switch for a few minutes, Chaleece, and talk to you about your interest and work in bilingual aphasia. How did you become interested in this line of work? And more importantly, what have you learned from your work in this area.   Chaleece: So, I've always been interested in learning other languages. I have actually attempted to learn a few languages and have not been that successful. But one thing that I realized while trying to learn these other languages is that I was really intrigued by the way languages work. As you're learning another language, you start to really kind of put the pieces together and see kind of under the hood of what's actually happening. And so, I got my undergraduate degree in linguistics, and I think that this kind of fascination with how languages work also partly fueled my interest in aphasia in the first place. I remember sitting in my language in the brain class, and a light bulb went off, I was like, “Oh, my gosh, this is exactly what I want to study!” This idea that this full language system that was completely developed, all of a sudden can get destroyed by damage to particular areas. And so, you know, that kind of set the stage for me wanting to study aphasia. And then when I got into Swathi's lab and she was doing bilingual research, I was so excited. I was like, “Oh, I am totally on board with this”. So, I volunteered for all the bilingual studies that I could, actually not speaking any other languages myself, but realized that I can still research other languages, even if I don't speak them. That was kind of an “aha” moment for me, which was very nice.   During my Ph.D., I got to know Theresa Gray, who was a fellow doc student, and she and I became really good friends. After graduation, we immediately began a collaboration. This was good news for me because I had gotten a job at Penn State, and we're in Central PA and there is not a huge bilingual population there. But there is an excellent center for language science at Penn State started by Judy Cole, Janet van Hell and Carol Miller. That has really helped to support my efforts in understanding bilingualism in general, and bilingual aphasia. So, the work that Teresa and I have done together has actually been really focused on getting culturally and linguistically appropriate materials out to bilingual clinicians. That was where we saw that we could do kind of the most good in this area.   But along the way, we found some really interesting patterns related to cross language generalization and language dominance and cognitive control. We've also had some really interesting insights from our students who've been working on these projects who have just made comments about the adequacy of the assessments that we're using. And so we're really starting to think about how that's going to affect what we know about people's languages that they speak as we're trying to figure out, you know, what's going on, after a stroke with these different languages. And it also just kind of brings to the surface, that there are so many limiting factors for individuals who don't speak English as their first language or don't speak English at all. There's such an enormous service disparity, at least in the United States, and work in aphasia research has been so English centric, that it's created these major barriers to having adequate services. But luckily, we're starting to kind of get on the ball a little bit, this field is receiving a lot more attention. There are some really great researchers on the case. I've been to some recent conferences where there have been a lot of great presentations. The Saffran Conference was dedicated to this idea, there was a great workshop by Jose Centeno. At the Academy of Aphasia, there were some really great presentations there on this topic. So I feel like we're, we're moving forward in trying to close the gap in services for people who are bilingual.   JANET: I agree with you on that. And many times, it's also on the clinician. Clinicians might be bilingual themselves, but they might not be. How can you best support the clinicians who does not share a language with the client or the family members yet still has to serve that individual? It's, again, another challenging area that you've undertaken the study. You are busy, I bet.   So in addition to everything you've been doing over all these years, I mean, the complexity and absent and bilingualism, you also have now added something to your area of interest. I'd like you to talk for a little bit about that, if you would, and that is your interest in counseling persons with aphasia. How did you become interested in that area of research? And I ask, because it just seems that there might be a story of a professional journey here. I love to tell stories and hear them, so I think this is a story that wants to telling.   Chaleece: All right, well, yeah, twist my arm.   Janet: Good, I was supposed to be twisting your arm, because I want to hear your story.   Chaleece: So, my husband and I, when we first got to Penn State, we became friends with a couple of people who are over in counselor education. The more we got to know each other and talk more about our work, the more we realized that we were missing a lot of information in each of our fields. I never had any training and counseling, and my friends, who were counselors, hadn't really heard of aphasia. One of these friends, you know, after we had started talking about aphasia, actually, her brother had a stroke and had aphasia and so this became a very personal topic for her. She's a rehabilitation counselor and I was so shocked to learn that this was not something that she had been taught in her training, not something that she had really come across. So, we decided to start lecturing in each other's classes, and start exposing each other's students to these ideas that we felt we had missed out on in our training. We also started digging into the literature, because we wanted to see exactly what was out there, like were we crazy and thinking that this was like missing information from each of our fields. And we weren't crazy, we weren't alone. There's a whole slew of professionals in mental health that don't know about aphasia and SLPs, on the whole appear to not feel adequately prepared to do any sort of counseling. So, we decided that we wanted to write a couple of papers to help practicing clinicians to provide counseling and for SLPs, to kind of understand more about counseling skills, and for counseling students to understand more about aphasia and things that they could do to help people with aphasia, and kind of bring more awareness to the issue. We also applied for some internal funding to start an interprofessional education project, aimed at better preparing our counseling students to work with people with aphasia and our SLP students to provide basic counseling. We're starting this in terms of a one off.  We take one counseling student and one SLP student.  We need to have them work together with a person who has aphasia, who's expressed some desire for counseling. Every semester we rotate out and have a new group. This has been such a rewarding experience. I've learned so much from my colleagues, the way that I teach my pastor students, the way that I run my research experiments, the way that I mentor students in my lab, all of that has changed so much, I kind of feel like my eyes have been open to this, this whole issue. In turn, I feel like I'm helping my students to be much more mindful in the way that they approach clinical practice and research to like, truly put quality of life first.   Janet: I think that's exactly right, and the way we should be thinking, and I agree with everything you said about counseling. We have a little project where we've been looking at motivation, which is different, I realize, but it strikes me that when you think about how we counsel and bring that into our treatment, and also think about motivation, or patient engagement and bring it into treatment, there's so much more that helps us facilitate behavioral change in a patient than just a specific treatment protocol that we're delivering. Because if we haven't got someone who we can empathize with or we can connect with or who's interested in change or understands why we're doing what we're doing, it's going to be a very long road, if we're only focused on the impairment based or the specific treatment protocol. So, I think it's great that you're exposing your students to different professions and really thinking about counseling. It's a great idea.   So that's a big journey that you've undertaken, and I'm sure it's not stopping here. It's an interesting journey. It's more exciting as I hear you talk about it; I hear the excitement in your voice and the passion in your voice. It's almost like you want to do everything, but of course, you have to go to sleep, and you know, there are limitations.   Chaleece: Right, right. Yeah, all of those things, right?   Janet: Yeah. Oh, exactly, exactly. But I will bet that you have a lot of new ideas out there and you are considering some next steps, both in clinical research and clinical activities. I heard this story of starting from a linguistic basis and maybe focused impairment, and now you're completely coming around, I don't think it's full circle, I think it's more like full spiral. You're still thinking about complexity and AbSANT, but you've got other pieces that I think will make a rich program. What are your new ideas that are percolating in that brain of yours that you'd like to see move forward?   Chaleece: So, I've applied for sabbatical? I haven't heard back yet whether or not I've received it, but I'm hoping that I can spend the next year focusing my efforts, specifically on what I see as being health disparities. It is related to both bilingualism and mental health and aphasia. So one of the things that I'm really interested in is, is expanding our IP program for counseling and SLP students. I'm also hoping to work with Jose Centeno to work to address service disparities in bilingualism. I know that that's a really big topic of interest for him and our interests seem aligned on there. I'm excited to learn more from him. I'm planning to meet with Amy Dietz and work with her to think more about some of these holistic approaches to aphasia rehabilitation. I've really enjoyed hearing about her yoga program that that she's been doing. I've always had this kind of nagging thought this was something that she and I kind of talked about and really connected on, it kind of goes back to interprofessional practice. It's this idea that we tend to ignore all of these other things that we don't see as being language related, right? We don't think about diet and exercise and sleep on cognitive outcomes. But there's so much research out there showing how these things can affect your thinking. So they must be affecting the rehabilitation outcomes in people with aphasia.   I have been interested in the role of exercise in aphasia rehabilitation, we I'm part of an am CDs writing group, and we did a review looking at the effects of exercise and aphasia. There's just a huge gap in the literature. So it's definitely an area that we should be focused on. I don't currently have an exercise research project going but, in the meantime, I have actually partnered with Francine Cohen at Temple to establish Aphasia Cycling Club. This thought had been in the back of my mind for a long time, my husband and I are avid cyclists. And I thought, you know, if people with aphasia could find this much joy in in cycling, and if they could do it together, like that would be great. But then I hesitated because I thought, you know, would they actually be interested? Is this something that anybody wants to do? Am I just a freak, because I like cycling, and I think everybody else should. But I decided to go ahead and reach out through the ARCH network, and I got a surprisingly positive amount of responses back that people were really jazzed about this. Frannie was one of those people that got back right away and said, “I am an avid cyclist, and I would love to do this.” So, I got really excited about it. I got pushed a little bit in the direction by Deb Myerson and Steve Zuckerman, because I don't know if people are aware, but they did this stroke across America campaign where they rode from Northern California all the way to Boston, to spread awareness for aphasia, they have stops along the way. I recommend looking it up because it's a very inspiring journey that they took. These things got me thinking that this could work. We've started meeting with some physical therapists and adaptive sports people in Philadelphia and in Hershey so far, to try and get this going. We're hoping to try and get some people in Pittsburgh as well. We're super excited about where this could go. If anybody listening to this has any suggestions, please contact me. I'm happy to receive any sort of feedback and suggestions that people have to offer.   Janet: What a terrific idea! Francine is such an enthusiastic person and. I think with the two of you leading this, it's just going to grow greatly, I think sometimes as we talked earlier, we get so focused on the language, we forget the people with aphasia would like to do other things. Or maybe they did other things before they had their strokes, and perhaps they have some physical challenges right now, so we tend not to think about bicycling. I think it's awesome. A Bicycle Club. That's wonderful.   Chaleece: I hope it works out. I hope that it provides people with as much joy as it's provided me,   Janet: I bet it will. I can see you doing something like, even if there's someone who has aphasia, who simply cannot end up riding, but if you have riders, and you take videos, and you involve the people who cannot ride with you in that manner, well, that also achieves a quality of life goal. I think.   Chaleece: That's a great idea.   Janet: Good. I hope it works out. I think of that because we have an friend who's an avid bicyclist, and he always straps on his head camera and will post his videos all the time about places he goes. Your cycling group, your aphasia cycling club, can do the same thing. What a great idea, I look forward to seeing it actually happen and seeing the videos that you make and the work that you do.   Chaleece, as we bring this conversation to a close, I would like to ask you to reflect on your interest in aphasia, your work with persons with aphasia and their family members and care partners, and in particular, your amazing journey from starting as a linguist to developing a bicycle club for people with aphasia. And I'm wondering if you have any pearls of wisdom, you might share with our listeners, or what I sometimes like to call Monday morning practices. And by that I mean ideas that clinicians can incorporate into their busy practices quickly and easily to perhaps change their thinking or change how they engage with clients.   Chaleece: In reflecting on my journey, I really maybe just to encourage other researchers to think about, so I started out really kind of focused in this kind of an impairment based mode, and gradually moved over to this person centered care, but I haven't discarded the idea of impairments based treatment, right? The idea is that you just kind of, house that in, you know, you fold it in to your person-centered care to the life participation. From my own research, the things that kind of float to the surface for me are, first that the brain can change long after the chronic stage has started. This, this idea of a plateau, I know that I feel like I'm preaching to the choir, probably about this idea, but it's still kind of amazing to me, how many people still feel like this is there's a plateau, right.   The other is not to be afraid to work on challenging tasks, like digging into the meanings of abstract words. With supportive conversation I found that this can be very rewarding, even for people who have very limited verbal output. In terms of I don't know, Monday morning practices like something easy to incorporate. I feel like I'll my pearls are kind of borrowed. There's a great one that I borrowed recently from Linda Worrall's amazing presentation as IARC. She suggested a way to form a simple habit was to just ask two questions at every treatment session. This could be a small change just to form better counseling habits as SLPs. She suggested at the beginning of the session to ask, “How are you feeling?”, which is a very different question from “How are you doing?” It allows people to open up a little bit more and actually talk about how they're feeling. Then at the end to ask, “What is the best thing that you're going to do today?” I started doing this as soon as she mentioned, I'm like, I'm going to do this. And I did it. I started doing it with all of my clinical research sessions that I do. It's really helped me to form better relationships faster with my research clients. I feel like they are telling me more about themselves. They really open up at the beginning of the session telling me how they're feeling, and that actually helps me to gauge how I go about this. Yes, for treatment research, you have a protocol, right? But the way you go about these treatment steps, you know, you can frame them in different ways, right? If I have a client who's feeling very anxious, I can say before each thing that we do that's challenging, I can say, “Okay, take a deep breath. All right. Now let's do this. This piece of the puzzle.” That seems to really, really help, It helps me to know where my clients are at to begin with, and asking “What they're doing? What's the best thing that you're doing today?” It's just so much fun to hear people get really excited about what they're doing. Sometimes they might say, “Well, nothing today, but tomorrow, I've got this great thing planned.” It's a really nice way to end the session on a really positive note,   Janet:  Borrowed or not, those are excellent pearls, and they are simple things that we can do. I do remember Linda Worrall's talk that you were referring to. It makes so much sense. We have these grandiose ideas, but you have to start with a couple of small things and how can you change your behavior tomorrow, very small, but that will pay great dividends. It sounds like those changes have paid great dividends for you already in your research sessions.   Today's conversation for me, has been exciting and interesting and thought provoking and would like to thank my guest, Dr. Chaleece Sandberg for sharing ideas, results, outcomes and thoughts from her clinical research journey in aphasia. Chaleece I greatly appreciate your taking the time to speak with me today, and again, congratulations on receiving a Tavistock Scholar Award.   Chaleece: Thank you so much. This was delightful. I   Janet: would also like to thank our listeners for supporting Aphasia Access Conversations by listening to our podcasts and learning from all of the guests that we've had over the years.   For references and resources mentioned in today's show, please see our Show Notes. They are available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, please email us at info at aphasia access.org   For Aphasia Access Conversations, I am Janet Patterson and I thank you again for your ongoing support of aphasia Access   References Kiran, Swathi, and Cynthia K. Thompson. “The Role of Semantic Complexity in Treatment of Naming Deficits: Training Semantic Categories in Fluent Aphasia by Controlling Exemplar Typicality.” Journal of Speech, Language, and Hearing Research 46, no. 3 (June 2003): 608–22. https://doi.org/10.1044/1092-4388(2003/048   Mayer, J., Sandberg, C., Mozeiko, J., Madden, E. & Murray, L. (2021). Cognitive and linguistic benefits of aerobic exercise: A state-of-the-art systematic review of the stroke literature. Frontiers in Rehabilitation Sciences, 2. https://doi.org/10.3389/fresc.2021.785312   Sandberg, C. (2022). Tutorial for Abstract Semantic Associative Network Training (AbSANT): Theoretical rationale, step-by-step protocol, and material resources. Perspectives of the ASHA Special Interest Groups: 7, 35–44. https://doi.org/10.1044/2021_PERSP-21-00176   Sandberg, C. W., Bohland, J. W., & Kiran, S. (2015). Changes in Functional Connectivity Related to Direct Training and Generalization Effects of a Word Finding Treatment in Chronic Aphasia. Brain and Language, 150, 103–116.   Sandberg, C. W., Nadermann, K., Parker, L., Kubat, A. M., & Conyers, L. M. (2021) Counseling in Aphasia: Information and Strategies for Speech-Language Pathologists. American Journal of Speech Language Pathology, 30(6), 2337-2349.   Thompson, C. K., Shapiro, L. P., Kiran, S., & Sobecks, J. (2003). The role of syntactic complexity in treatment of sentence deficits in agrammatic aphasia: The complexity account of treatment efficacy (CATE). Journal of Speech, Language, and Hearing Research, 46(3), 591–607. https://doi.org/10.1044/1092-4388(2003/047)   Worrall, L. (2022). The why and how of integrating mental health care into aphasia services. Presentation to the International Aphasia Rehabilitation Conference. Philadelphia PA, June.     URLs AbSANT    Abstract Semantic Associative Network Training. SANDLab. https://sites.psu.edu/sandlab/projects/absant/   Academy of Aphasia https://www2.academyofaphasia.org/about/   ANCDS    Academy of Neurologic Communication Disorders and Sciences. www.ancds.org   ARCH Network    Aphasia Resource Collaboration Hub  https://aphasiaresource.org   Collaboration of Aphasia Trialists https://www.aphasiatrials.org/   Eleanor M. Saffran Conference https://www.saffrancenter.com/conferences   Stroke Across America https://www.stroke.org/en/stroke-connection/stroke-onward/stroke-across-america

Interviewer info Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic communication impairments. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer. In this episode, Lyssa Rome interviews Marie-Christine Hallé about her work on including significant others in aphasia rehabilitation, communication partner training, and knowledge translation.   Gap Areas This episode focuses on Gap Area #4, markedly insufficient training and education of family or carers regarding aphasia and communication strategies; and Gap Area #9, lack of services specifically for family members of people with aphasia across the continuum of care.   Guest info   Dr. Hallé is a lecturer at the University of Quebec at Trois-Rivières and the coordinator of SAPPA, a service for significant others of people with aphasia in Quebec Province, Canada. She completed a PhD in speech language pathology at University of Montreal, and a postdoctoral fellowship in knowledge translation at McGill University. Her work aims to support the inclusion of significant others in aphasia rehabilitation, as well as communication partner training. To promote the uptake of these best practices, she studies professional competency development among speech language pathology students with respect to evidence-based practice and counseling, as well as professional practice changes among clinicians. She is a recipient of the 2022 Tavistock Trust for Aphasia Distinguished Scholar Award.   Listener Take-aways In today's episode you will: Learn about changes in family relationships due to post-stroke aphasia. Understand how speech-language pathologists can support significant others of those with aphasia across the continuum of care. Identify barriers and facilitators to implementing communication partner training. Edited show notes Lyssa Rome Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California, and I see clients with aphasia and other neurogenic communication impairments in my LPAA-focused private practice. I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.   I'm today's host for an episode that will feature Dr. Marie-Christine Hallé, who was selected as a 2022 Tavistock Trust for Aphasia Distinguished Scholar, USA and Canada. In this episode, we'll be discussing Dr. Hallé's research on significant others' experiences of post-stroke aphasia, communication partner training, and knowledge translation.   Dr. Hallé is a lecturer at the University of Quebec at Trois-Rivières and the coordinator of SAPPA, a service for significant others of people with aphasia in Quebec Province, Canada. She completed a PhD in speech language pathology at University of Montreal, and a postdoctoral fellowship in knowledge translation at McGill University. Her work aims to support the inclusion of significant others in aphasia rehabilitation, as well as communication partner training. To promote the uptake of these best practices, she studies professional competency development among speech language pathology students with respect to evidence-based practice and counseling, as well as professional practice changes among clinicians. Marie-Christine Hallé, welcome to the Aphasia Access podcast. It's great to have you here.   Marie-Christine Hallé  Thank you.   Lyssa Rome  I wanted to start, as we often do, with asking you about whether you've had any “aha” moments—significant experiences that were critical in your development as a speech language pathologist?   Marie-Christine Hallé   Great question. In fact, I have an “aha” moment, which is also kind of an “uh-oh” moment—like the perception of a problem.   When I first began to work as a speech language pathologist in rehabilitation, I was very interested and motivated to work with people with aphasia and their significant others as well. I had completed my master's in speech language pathology, during which I had done a research project. I had read transcripts and analyzed interviews of significant others of people with aphasia. It raised my awareness regarding what significant others can go through—the challenges that they can have when communicating with the person with aphasia.   So I was really motivated to try to make a difference in their lives, to help them to better communicate with one another. But in my clinical practice, I had the feeling that I didn't actually succeed to go there. I was expecting to have these conversations regarding how to help them communicate with one another. But I was not seeing significant others that frequently. Or when I was seeing them, I sometimes had the feeling that the conversation I had with them was—not superficial—but I didn't get to the communication challenge I was expecting that I would get.   So this was kind of my “uh-oh” moment that motivated me to do a PhD. Because at this point, I was like, maybe we don't need to develop a new intervention, targeting significant others, maybe we need to better understand what is the experience of significant others? What are they what they are going through. And also to know about the experiences of speech language therapists as well. And if we better understand both experiences and how they fit with one another, maybe we can better try to actually help them and have the conversation I was expecting to have with them.   Lyssa Rome  That makes a lot of sense. I think a lot of us in clinical work find our ideals don't always match up with the reality. Right? And that specific, “uh-oh”/”aha” moment, brings us to the gap areas that we've been trying to highlight in the podcast. These are the gap areas that were identified in the State of Aphasia report by Nina Simmons-Mackie that was published in 2018. In our conversation in this episode, we're going to be focusing on two gap areas that you've identified here. The first one is Gap Area #4, which is markedly insufficient training and education of family or carers regarding aphasia and communication strategies. And the second is Gap Area #9: lack of services specifically for family members of people with aphasia across the continuum of care. So obviously, those areas are important to you and your work.   I wanted to continue by talking about how that “uh-oh” moment led you into some early papers, and early research that you did, looking at how aphasia changed relationships between people with aphasia and their care partners or significant others, and specifically, between mothers and daughters, where the mothers had post-stroke aphasia. So can you tell us a little bit about that research?   Marie-Christine Hallé Yes. This research was conducted with four adult daughters of mothers who had aphasia, and we try to look at their relationships. We have identified how adult daughters helped their mothers and the different types of behavior that they could have. We identified how the type of behavior the daughter had was related to how daughters perceived their mothers.   So daughters could perceive their mothers as vulnerable or as having difficulty. They could also perceive her as having abilities. And sometimes when the major was seeing the mother as someone with difficulty or someone vulnerable, daughters would help their mother in a protective manner by doing things. Not at their place, but on their behalf or doing things for them. Like calling to take some appointment with a doctor, or sometimes censoring themselves, like avoiding some conversation. Like a daughter is saying that she had marital issue and she didn't want to worry her mother. So she would avoid having this discussion with her mother.   And the opposite, when daughters perceived more their mothers as having abilities, they would adopt trusting behavior. So encouraging their mothers to do things on their own, even if they may have some difficulty. So a daughter saying that she went to the bank with her mother, but she let her mother go and meet with a bank teller. Even if she saw her mom having some difficulties, finding her words, she let her mother try by herself. Or whenever they were using some communication strategies, recognizing that the mother had something to say. They were recognizing their competency. So that was a way of trusting her.   So we we kind of saw different type of relational scenarios, sometimes the mother could react by being satisfied, or sometimes being dissatisfied by the daughter's reaction. But we also identified how aphasia seem to complexify the adjustment to the relationship, because sometimes daughters seemed to avoid communication to solve their problem.   I have an example in mind of a daughter, who in the first place, kind of trusted her mother. She was living with her. She trusted her mother by going by herself to run some errands. So she left her mother alone in her house. So the daughter could go by herself go run some errands. But when she came back, she saw her mother was worried or crying. So she told herself—the daughter, she didn't speak about it with her mom, but she told herself, “I left my mother home, when I came back, she felt worried, I shouldn't do that again. Next time, I need to go to the grocery I'll wait for my mom to be somewhere else at an appointment. So I won't leave her alone.” So instead of having an open discussion with the mother, asking, “What was going on? Are you worried? What could we do next time?”, she decided by herself not to solve this problem through communication. So it shows how aphasia can make this adjustment more complex, because you need to adjust to life with post-stroke aphasia, you may need to take some new roles and responsibilities, but because of aphasia, you may kind of avoid the use of communication to actually solve this problem.   Lyssa Rome It sounds like some of those trusting behaviors really had to do with recognizing the underlying competency of the person with aphasia, these mothers with aphasia, and maybe also their abilities. I'm wondering how, recognizing that and sort of seeing these different kinds of perceptions that the daughters had about their mothers and the mothers had about their daughters and their level of satisfaction or dissatisfaction—how did that influence your own focus in your work on how speech language pathologists involve significant others in aphasia care?   Marie-Christine Hallé I think it had the influence about how important it can be for us as speech language pathologists to involve significant others to better communicate with the person with aphasia, but to help them reveal and recognize their competency through communication. So this was kind of the the influence it had. How we can see that through communication, or that the competency that you can reveal through communication could then have influence on the relationship and domains other than communication.   It can even lead to a virtuous cycle, where you communicate with one another, you see the other's competency during communication, but that can also foster some trusting behavior that can contribute to the person's autonomy. And at the same time as a caregiver, potentially, eventually less sense of burden, because the person can do things on her own. And the more the person does things on her own, the more you can see her as competent, as having abilities. That can nourish those trusting behaviors. So it's how we can connect what happens in communication, and what happens in the relationship outside communication as well.   Lyssa Rome  That makes a lot of sense to me. And I think that speaks to how central communication is for and how being successful in communication can have really broad impacts in the rest of someone's life and in their relationships and their sense of self as well. You've written about these experiences that significant others have of aphasia, and how that relates to their relationship with the person with aphasia in their life, and also their relationships with rehabilitation services. And I'm curious about if you could say a little bit more about what you've learned in those areas as you continue to study significant others and their experiences of aphasia?   Marie-Christine Hallé Yeah, so by studying their experience of rehabilitation, what I learned is how significant others, when they get to rehabilitation after acute care, they get there in a state of being centered on the person with aphasia. So following the hospital, they may have feared to lose the person. They were there day in, day out at the hospital to take care of her, sometimes to speak on their behalf, making sure she receives good services. And then when they arrive in rehabilitation, they are in this state of being focused on the person with aphasia. So when they meet with health professionals, when they talk with health professionals, they talk about the person with aphasia. At the same time, health professionals respond by also being focused on the person with aphasia. So this kind of put significant others in the state of seeing rehabilitation as being about the person with aphasia, not necessarily about themselves. So this even influences their expectation of rehabilitation. If, for them, rehabilitation is about the person with aphasia, they will be satisfied by rehabilitation services as long as it fulfills their needs related to their caregiver role.   But what was really a revelation for me was also that what it can involve is that a significant other could speak of rehabilitation in really positive terms, saying, “Oh, that was a five star rehabilitation.” So they are very satisfied. But at the same time, they could also talk about struggling in their everyday life, needing some respite or having some challenges, maybe communicating with one another. So this is something else that I learned—how there was this possible coexistence between being satisfied with the services, but at the same time, going through some difficult stuff, and all that, because the rehabilitation was associated with the person with aphasia.   Lyssa Rome  Right, so they're not expecting or maybe even getting the message early on that aphasia rehabilitation is about more than just the person with aphasia, and that they also could benefit from, say, speech language pathology services, is that is that right? Is that getting it?   Marie-Christine Hallé Yeah, absolutely.   Lyssa Rome Where does that bring us in terms of what clinicians should know about how we can perhaps do a better job of bringing significant others in—I don't know, earlier on or in more meaningful ways—so that they feel part of the rehabilitation process.   Marie-Christine Hallé    So I feel there's something about the message we tell them. Yes, they can be centered or focused on the person with aphasia, but we have to think about what is the message we tell them, as well. So should we maybe be more explicit in telling them that aphasia is a family thing? That aphasia, yes, it happens to one person, but it affects all people surrounding the person. To let them know that the rehabilitation process can be about them as well. So I think there's something about these kinds of messages we tell them.   We also found that sometimes it could not be comfortable for them to think about them or sometimes some of their needs could be more kind of implicit at certain points, like their need to have a better relationship or better communication with the person maybe more implicit. So those more implicit needs, maybe we can more explicitly bring them or introduce them to significant others, so that they can feel that it's legitimate to feel the those kinds of things.   We can open discussion by saying we know how for some people communication can be sometimes difficult. Or sometimes you can understand one another but sometimes the topics you have in conversation are not the same topics as before. Or sometimes you can feel frustration we've heard this from other significant others. What about you? So to make it to make it okay to feel this or to help them maybe identify those needs that may be more implicit at certain points. So to open the discussion, make it okay, tell them like very clearly that it can be about them, that we can be here for them as a family unit.   Lyssa Rome    What you're saying rings so true to me, and the importance of letting significant others know that their experience of aphasia is also important and also worth addressing. You also then studied, I think, maybe more generally, but maybe you can tell us more about what else significant others need from the rehabilitation process?   Marie-Christine Hallé  Well, by studying their experience of rehabilitation, and understanding that they were focused or centered on the person with aphasia, it helped to identify a variety of needs that significant others can have. Something that can be helpful is how we can associate significant others' different needs in relation to the different roles that they can have.   So when I said that significant others associate rehabilitation with the person with aphasia, or maybe themselves as caregivers, so there have they have needs as caregivers—the need to have information, the need to have tools to help the person with aphasia, the need to have hope that things are going to be okay, or the need to be part of the rehabilitation team, the need to feel that they are considered as a partner in this rehabilitation experience. Those can be some things we have identified related to the caregiver role.   But they also have other needs. Like I said earlier, when I talked about communication, so they can have the need to have a better communication with the person with aphasia, the need to have a better relationship with the person with aphasia, and this is more related to themselves being, well,l significant others or are people with an affective link with someone with aphasia. So, spouse, daughter, friend, and in their kind of role, they have their communication needs and needs to have better relationships. And when we think of significant others as patients themselves, we also identify that they have the need for support, the need to be supported, and the need for respite. So we can see this variety of needs.   Some of these were previously documented before my work. But this understanding of the rehabilitation process kind of helped to classify significant others with their roles. When you think of an iceberg, some needs are kind of outside of the water, or the obvious one that you see, those related to their caregiver role. And some other needs during their rehabilitation process, maybe when I say implicit, those that are hiding. Because they don't talk about those needs, or because they are still not clear to them to formulate them as needs so that they can ask for help.   Lyssa Rome  Can you say a little bit more about what some of those under the surface needs were that you were able to identify in these qualitative studies that you were doing?   Marie-Christine Hallé Yes. So I remember a spouse, when she was talking about communication, she didn't say clearly or explicitly, “I want to have better communication with my husband.” But she said, “evenings,” I don't know how to say not “evenings are long, but that are less busy as before, like, not boring, but like the time is different now that their the way we spend our time together is different because we don't talk much to one another.” So this is also what I mean by implicit—it's that there was this feeling of discomfort regarding communication, but it's not necessarily formulated as, “I want to better communicate.” More at this point, it can be kind of a discomfort.   Lyssa Rome  Yeah, and it sounds like also maybe a sense of loss, right? We used to have this evening that was full of conversation, and now we don't have that anymore. Thinking about those needs both the explicit ones and the implicit needs, what role does communication partner training play in how we as speech language pathologists can support the significant others of people with aphasia?   Marie-Christine Hallé  I think it's by helping them to keep on using communication to maintain their relationship. You spoke earlier about the idea of loss—so, that the loss of the way communication used to be or the way the relationship was before. So to keep on communicating with one another, and to use communication to solve problems. Like when I spoke earlier of how aphasia can make it more difficult to adjust to life with aphasia. So, if we train communication partners to use different strategies to keep on communicating with one another, to find still enjoyable time to communicate, they can use communication more frequently for the pleasure of communicating, and also for the use of solving some problems they can have in relation to the new role and responsibilities they can have. To help them to keep on having frank and honest communication, like authentic communication. When they keep on talking about what they used to talk about, even if sometimes some subjects may be more complex. But how can we still get to some authentic, significant topics that they would like to talk about. Even perhaps, how it can help to have more balanced relationships. So because we talked about the needs significant others can have as caregivers, but they are not only caregivers. So if they don't want to feel only as caregivers—and the same thing for the person with aphasia, if the person with aphasia wants to feel that person as still a spouse, still a daughter, can the communication have something authentic, that still feels like their previous relationship? So not just as someone helping someone else. That's what I mean about this idea of a more balanced relationship.   Lyssa Rome  And I think that that really underlines the importance of communication partner training to the Life Participation Approach, right? Because if communication partner training is allowing people to fulfill other roles, other than just being a care partner, but also still being a spouse, still being a daughter, or a sibling, or in some other role—the original role—with his change of aphasia, then in order to support that, we as speech pathologists need to be able to really help people learn better communication strategies.   Marie-Christine Hallé    Yes, and when you were speaking, I was also thinking about, as you said, the these other roles they can have. You know, earlier I've talked about their need for respite, the need to be supported, and how we can even help them to have support from the person with aphasia. In this idea of balanced and authentic communication and relationship, it can be interdependent, right? So the spouse or significant other can help the person with aphasia, but if they want to stilll have the relationship they used to have when you can communicate and have the person with aphasia still play a role of support, that can also be a way to fulfill their needs. But yes, to make this connection with this Life Participation Approach, where both members of the dyad can play their the different roles that they can play in their social life.   Lyssa Rome    Yeah. Given the importance of that, it seems like that leads very clearly into some of your other work that involves looking at how speech language pathologists include significant others and how SLPs think about their work involving significant others. You did some really interesting research on that question. One of the things that really stood out to me in your paper was this idea that SLPs thought about working with significant others, as—and this is a quote from the paper—“a challenging bonus to the fundamental patient-centered approach.” Can you explain a little bit more about that?   Marie-Christine Hallé  Yes. So this idea of the “challenging bonus” is while analyzing the data and the interviews, there was this dimension of bonus, like of a positive addition. When speech language pathologists were speaking of their work with significant others, they saw this as a positive addition to their fundamental approach. They were explaining that their focus was on the person with aphasia. That was the focus of their work. That was the focus of their intervention. And if they could meet with significant others, then that was like the cherry on top. The basis was working with the patient with aphasia. And the positive addition was, “Oh, well, if I can meet with the significant other, then it's even better than they can provide me some valuable information about the person with aphasia, then I can better adapt or tailor some intervention to the person with aphasia because I have more information from the significant other about the person with aphasia.”   So this is the expression challenging bonus, it's how I identify the bonus part in the interviews. And this idea of a challenge is that even if this was seen as something positive, it was also seen as something challenging because speech language pathologist said that they sometimes had a hard time to actually meet significant others, to have access to significant others. So this idea of a challenge is this idea that they didn't meet with them frequently. And also, the idea of a challenge is that they were also careful about not overburdening significant others or not causing stress to the significant others, perhaps recognizing the vulnerability that significant others can have as well. So this also contributed to this idea of that positive addition, that is still challenging to to make happen, or that you have to be careful also, when when meeting with significant others.   Lyssa Rome    It sounds like there are some barriers to involving the significant others. And you sort of touched on those briefly—the idea that it's hard to access significant others sometimes. And also then some barriers having to do more with attitudes, like I don't want to overburden this person who's already feeling perhaps burdened. Can you talk a little bit more about some of the barriers and facilitators that you found when talking with SLPs, or when interviewing SLPs for your research? About sort of, what about the barriers and facilitators and about what they consider an ideal kind of practice in this area?   Marie-Christine Hallé   Yeah. In fact, even though it was hard sometimes for them to meet with families, when I asked SLPs the question, what would your ideal practice look like? Let's dream there are no barriers, what would you do? So this, there was this idea that, in an ideal world, they would meet with significant others, probably in their house. Like, to go in with significant others and people with aphasia, to go in their house to support them in a really natural and authentic kind of environment to have conversations. So when they dreamt, that's when what their practice looked like.   Even though the goal of this research project, at this point, was not to focus on or to study barriers and facilitators, because we didn't know what we would find. When I was doing this study, I wanted to know what was speech language pathologists' experience, but I could still infer some barriers and facilitators. So when I said that SLPs said they had a hard time to meet with significant others, I think there was perhaps this idea of the timing that was maybe difficult.   What was fascinating is that speech therapists working in inpatient rehabilitation were saying that they didn't see significant others that often, because they were probably busy with other therapies, or they were still overwhelmed maybe by what was going on. On the other hand, you had speech language pathologists working in outpatient rehabilitation saying, “Well, now that some time has passed, significant others need some respite. So we don't see them that much anymore.”   So in terms of more specific barriers, there was this idea of the timing. Also, something related to the experience of speech language pathologists—and it's also related to the fact that they didn't see them that often. They didn't see them often, so didn't didn't have that much experience working with them. And some of them said, “I first want to be comfortable working with the person with aphasia, and then when I'll get more comfortable working with the person with aphasia, I can work with significant others as well.” But at the same time, they didn't see them that often.   Also, the impression that speech language pathologists were not necessarily allowed to go and meet patients in their house, it was not part of their the policies, or the institutional rules, where they worked. So this was a barrier also. And the way that speech language pathologist could perceive communication partner training, they say, so sometimes, “If the significant other or the person with aphasia, if they are focused on recovery, or if they are at the beginning of their grieving process, I cannot necessarily introduce them to communication partner training.” Or some SLPs would say, “I don't want to… I can do communication partner training, but as long as I don't add more stress to the dyad.” So there was this idea of a need to have different conditions there. But these conditions are not often altogether present.   Lyssa Rome It points to kind of gap, I think, between what we know about the value of communication partner training, and then how SLPs are actually able to practice. And I think that you have been working on ways to bridge that gap. And your work on knowledge translation and implementation has sort of led in that direction, it seems to me. Can you say a little bit more about that?   Marie-Christine Hallé   Yeah. So once I had completed my PhD and had this indication of a gap, as I said, that was not the intent, it was more like an exploratory study, but it pointed to a gap, to some indication of a barrier. So afterwards, I went and studied more, I would say, intentionally, the current practices regarding communication partner training.   I have conducted a study that is not published yet. But in the province of Quebec, I have studied using surveys and medical chart reviews. What were the current practices of speech language pathologists regarding communication partner training? And this kind of confirmed this idea of a gap. Because it was a minority of speech language pathologists that would use that very often with people with aphasia. And then what I did was also to explore, intentionally, those barriers and facilitators to use communication partner training by asking speech language pathologists what are those barriers using a framework, using a theoretical framework—the theoretical domains framework—that is constituted of domains that are recognized as influential in one's behavior, like a professional practice. So we know that our professional practice can be influenced by our knowledge, our skills, our environment, the influence of people around us, the beliefs about our own capabilities. So these are some of the domains. So we've asked questions to speech language pathologists regarding those domains.   The idea is if we can identify and kind of classify those barriers in terms of domains, then we can identify and develop knowledge translation strategies that will aim to overcome those specific types of barriers. Because the better you know what is the essence of the problem, what is the essence of the barrier, then you can better adjust.   Lyssa Rome I wonder when when we're able to overcome some of those barriers that you've identified, and translate the knowledge, what will our treatment look like?   Marie-Christine Hallé   Good question. And, well, if I respond, like in a simplistic manner, since there is a gap, I think that what we would aim for, or what we would expect our practice to look like is to have more frequent use of communication partner training. Or maybe a more… not a systematic offer, because you want to adapt the intervention to the dyad or the people you have in front of you, but still maybe offering it more often, discussing this more often. But I think that once we overcome these barriers, our practice could be different—and not only our practice, as speech language pathologists, but also I think, our practice as a whole team, because we are influenced by our colleagues as well, right?   So I think what the practice may look like, across the continuum of care, is we may have some different messages or discourse, like we've talked about earlier. Like from day one or early on following the stroke, in acute care, we may, as a team—as speech language pathologist, neurologist, nurse, physical therapist—give people the message that what happened to them is a family thing. So if early on, give people the message that they they have the right to be involved, they have the right for some needs to be fulfilled, then this may improve their level of readiness when we introduce this idea of communication partner training,   I also think that what our practice as a team may look like is to make sure that everyone from the interprofessional team is trained and uses communication strategies. So from day one, from acute care, people with aphasia and families will see people using communication strategies. It will not be an SLP thing. So if we want to kind of improve the buy-in or the acceptance regarding the use of communication strategies, if more people use it, it can contribute to this idea that it's acceptable and it's feasible. Because if not, you may think that it's an SLP thing. The SLP is the person able to do it, she will or he will become our translator. But if everyone uses it, then it can even give the message that I'm able to do it. And it can even be kind of empowering. So I think our practice can be different in that manner, as well.   And I think that our practice as speech language pathologists can also be different in the way we introduce what is communication partner training, like developing kind of an argument about how we present this, and how we react when people tell us that they are not interested. The idea is not… we don't want to force people, you know, to receive communication partner training. But if they tell us that they are not interested, that they are focused on recovery, do we just say, “Oh, okay, no, you're not ready.” Or should we have an open discussion, asking them, “What do you fear about communication partner training? How do you understand it? What do you think will happen if we use this training?” So we have access to some of their beliefs that they may be afraid that if we use some communication strategies, that the language will not get better. So if we have access to their belief, we can kind in a more adapted manner respond to this and potentially negotiate with them in a collaborative manner, but to help them take an informed decision about the care. So this is, I think, what the practice could look like.   Lyssa Rome  Yeah, the idea of everyone from the neurologists and the nurses and the whole rehab team using communication partner training is such a dream, I think, for all of us in the field. And I can see how if we had that, that kind of modeling, from very early on, it sort of normalizes using strategies in a way that I think would really change things. So, to wrap up, I'm curious, what would you leave SLPs, the clinicians listening to this? How should we be thinking about including significant others in our work?   Marie-Christine Hallé   I think we should see inclusion of significant others as a necessity, as opposed to a bonus. To feel that this is the basis of our work. To see that our patient is the family unit. I really liked this analogy of a family system as a mobile—you know, that you put above a baby's crib? And the analogy is not from me, it's from people when I was trained in using family centered care. But you know, if you take a look at the mobile, and that is constituted of different pieces, and if wind blows on one piece of the mobile, the rest of the mobile, the other pieces, will move as well. If you pull or push one piece, the rest will move as well. And the other pieces that will move will influence, again, the other pieces. So you know, the pieces are related. They influence one another. And this is what families are. So if we see them as interrelated, interconnected, and as the whole unit being our patient, I think that can be a way to change our practice.   Lyssa Rome  What a great image. Thank you so much for talking with us, Dr. Marie-Christine Hallé. I really appreciate it.   Marie-Christine Hallé    Thank you so much to you too. It was a pleasure to talk with you.   Lyssa Rome And thanks also to our listeners. For the references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access. For Aphasia Access Conversations, I'm Lyssa Rome.       References and Resources SAPPA https://aphasie.ca/en/projet-sappa/   24 hour virtual Teach-In Marie-Christine Halle, 24-Hour Virtual Teach-In   Google Scholar https://scholar.google.com/citations?user=ybWvcBIAAAAJ&hl=fr&oi=ao   Selected References Shrubsole, K., Power, E., & Hallé, M. C. (2022). Communication partner training with familiar partners of people with aphasia: A systematic review and synthesis of barriers and facilitators to implementation. International Journal of Language & Communication Disorders.https://doi.org/10.1111/1460-6984.12805   Hallé, M. C., Le Dorze, G., & Mingant, A. (2014). Speech–language therapists' process of including significant others in aphasia rehabilitation. International journal of language & communication disorders, 49(6), 748-760. https://doi.org/10.1111/1460-6984.12108   Hallé, M. C., & Le Dorze, G. (2014). Understanding significant others' experience of aphasia and rehabilitation following stroke. Disability and Rehabilitation, 36(21), 1774-1782. https://doi.org/10.3109/09638288.2013.870608   Hallé, M. C., & Le Dorze, G. (2013). A Grounded Theory of Caregiving Based on the Experience of the Daughter of a Woman with Aphasia. In Ball, M.J., Müller, N., & Nelson, R.L. (Eds.). Handbook of Qualitative Research in Communication Disorders (p. 271-282). Psychology Press. https://doi.org/10.4324/9780203798874   Hallé, M. C., Duhamel, F., & Le Dorze, G. (2011). The daughter–mother relationship in the presence of aphasia: How daughters view changes over the first year poststroke. Qualitative health research, 21(4), 549-562. https://doi.org/10.1177/1049732310391274

Welcome to this Aphasia Access Aphasia Conversations Podcast. My name is Janet Patterson. I am a Research Speech-Language Pathologist at the VA Northern California Healthcare System in Martinez, California, and a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their efforts in engaging with persons with aphasia and their families through a variety of educational materials and resources. I am today's host for today's episode that will feature Dr. Nina Simmons-Mackie and Dr. Jamie Azios. These Show Notes accompany the conversation with Dr. Simmons-Mackie and Dr. Azios but are not a verbatim transcript.         In today's episode you will learn about: Lache Pas La Patate! and aphasia The importance of being mindful of gap areas in aphasia service and research Moving aphasia care best practices from knowledge to action Dr. Janet Patterson: Welcome to our listeners. Today I am delighted to be speaking with two individuals who are well known in the field of aphasia rehabilitation, Dr. Nina Simmons-Mackie and Dr. Jamie Azios. Nina and Jamie authored the text, Aphasia in North America, which is also known as the State of Aphasia Report. The original State of Aphasia Report was published by Aphasia Access in 2018, and contains information describing, among other topics, the frequency and demographics of aphasia and its impact on individuals and society, and aphasia services and service gaps. The State of Aphasia Report is a valuable resource for clinicians, researchers, administrators, and third-party funding agencies as we seek to craft a rehabilitation atmosphere that balances the treatment evidence base, the resource support for community aphasia groups, and the principles of client centered care. An updated State of Aphasia Report is forthcoming.   Each of our Podcasts in 2021 and 2022 highlighted at least one of the gap areas in aphasia care mentioned in the original State of Aphasia Report. For more information on the original State of Aphasia report, check out Podcast Episode #62 with Dr. Liz Hoover, as she describes these ten gap areas and their impact on aphasia rehabilitation. Our conversation today takes a broader view of the aphasia service gaps, crossing all ten gap areas. My questions for Nina and Jamie will ask them to reflect on the impetus for the original State of Aphasia Report, as well as the changes that appear in the updated State of Aphasia Report.   My first guest is Dr. Nina Simmons-Mackie, Professor Emeritus at Southeastern Louisiana University in Hammond, Louisiana. She has received the honors of the American Speech-Language-Hearing Association, the Louisiana Speech-Language-Hearing Association, and the Academy of Neurologic Communication Disorders and Sciences. She has published numerous articles and chapters and has had many years of clinical, academic and research experience in the area of adult aphasia. Also joining me today is Dr. Jamie H. Azios. She is the Doris B. Hawthorne Endowed Chair in the Department of Communicative Disorders at the University of Louisiana in Lafayette. Her research interests include qualitative research methodologies, understanding perspectives of people living with communication disabilities, co-constructed conversation and aphasia, and the impact of communicative environments on social participation and inclusion. She has published articles related to client centeredness, communication access, and life participation approaches to aphasia. Welcome Nina and Jamie to Aphasia Access Conversations and our discussion about the State of Aphasia Reports.   Dr. Nina Simmons-Mackie: Thanks Janet, happy to be here.   Dr. Jamie Azios: Really excited and honored to be here. Thanks for having us.   Janet: Good, and I look forward to a great discussion and learning about the State of Aphasia Reports. Nina and Jamie, I would like to begin our chat today by asking about the original State of Aphasia Report. Many of our listeners are familiar with the book, which is a resource published by aphasia access, describing the social, financial and life quality consequences of aphasia. It contains current statistics, compelling stories, and a one-stop report to understand the state of aphasia care in North America. Nina, you were the impetus for this project and oversaw its production. How did you organize a team to think about the need for this project and envision the value it could provide to people with aphasia, clinicians, medical and rehabilitation professionals interested in aphasia, administrators, and organizations who fund aphasia research?   Nina: Well Janet, when I started out in the field of aphasia, it wasn't all that difficult to review the literature on an aspect of aphasia. Now, the amount of information is just overwhelming. A kernel of an idea started forming as I was involved in a variety of projects that required a huge amount of effort gathering statistics and references to justify different types of services for aphasia. As I talked to lots of colleagues floating the idea for a comprehensive report, everybody agreed that it would be immensely helpful to pull data from diverse sources into one document. Something that could be a quick reference for grants or advocacy or program proposals.   I also had some personal experiences at the time that highlighted some gaps in the system of care for aphasia. So, it really struck me as a worthwhile undertaking and the board of Aphasia Access was really supportive of the idea. We succeeded in pulling together a diverse team of experts to serve on an advisory committee to review the chapters and vet the information. The report was originally envisioned as a relatively brief statement of gaps, but as I got into the literature, I realized that it was too much for just a short paper. In fact, it turned into 163 pages in the original document published in 2018. Now, it's been about five years since this publication, and so much has happened in the aphasia world. So, we felt like it was time for an update. Next year, we hope the state of aphasia will be published. Jamie graciously agreed to join me in this project, researching and writing the updated report. Jamie, you might have some comments on the update.   Jamie: Yeah, it's been so fun to work on this project with Nina. I've learned a lot from reviewing all the work in our field, and other fields too. Just getting my feet wet with the kind of experiences that Nina was talking about, pulling together this key information from so many places. It's been really challenging, but it's also been really rewarding.   I didn't realize just how much has changed in the last five years. There're just some amazing things happening in terms of aphasia programming, and technology, and attempts at overcoming gaps and equity and inclusion. That's not even talking about the way stroke and aphasia care has been impacted by our worldwide pandemic. So, in terms of what's new for the update, you can expect us to hit on all those new key areas. We're really going to try to highlight both the gaps and solutions over the last five years.   Janet: You both describe such an exciting project. Time flies, and things happen. And if you get busy in your own little world, sometimes you don't recognize all the things that are going on around you and all the changes. This is a great idea that you had 100 years ago Nina or maybe five or six. I'm glad Jamie, you're part of the current project. One component of the original State of Aphasia in North America is a list of ten gap areas, and you mentioned those a moment ago Jamie, gap areas in aphasia care and aphasia research. In planning our podcasts, we identified at least one of these gap areas to highlight in each interview. The ten gap areas are listed in the show notes for this conversation and discussed in Aphasia Access Podcast Episode #62 with Dr. Liz Hoover. So, Nina and Jamie as well, how did your team identify the gap areas for the original State of Aphasia Report and consider the potential for their influence on aphasia care and research?   Nina: Well, really the gap areas grew directly out of the data. It was similar to a literature review. The main difference is that a typical literature review addresses a specific topic, whereas this report addressed any topic that might be useful to advocate for aphasia services. So, the sources included government statistics, some original surveys of clinicians in North America, and grey literature. Both Jamie and I have a background in qualitative research so our approach has been pretty much like qualitative research. We take a broad-based look at the literature and identify themes that seem like topics that would be important in advocating for aphasia services. And then as we dig in and begin collecting the information, the gap areas become fairly obvious. In other words, we don't just think up gap areas. They represent what is described in the aphasia literature.   Jamie: We mentioned this earlier, but one of the big gap areas that's going to be recognized in the update, likely because of the impact of COVID and our shifts to engaging more digitally, is the idea the inaccessibility that people with aphasia have when it comes to using technology. We know that there has always been a digital divide, but it seems like COVID, and the loss of face-to-face contact has really widened that gap. Also widening that gap is just the fact that older people in general are using technology more and people with aphasia seem to be falling behind when compared to their age-matched peers due to these accessibility issues. The data show that people with aphasia don't text as much as other people their age, they seem to have more difficulty retaining technology skills, they have difficulty using social media platforms. We know that these things are critical for maintaining social connection. So even before COVID, we saw an increasing use of technology to access information, interaction, across a range of activities. But during COVID, and even after COVID, there's an absolute explosion. We do plan to dedicate a chapter to technology and accessibility.   Janet: That's good, which leads me right into my next question for the two of you. I wonder if you would reflect on the original State of Aphasia Report and its contents and describe the changes in the information in the updated State of Aphasia Report? In particular, would you comment on the ten gap areas in the original report, and any changes in the updated report? I know you've alluded to a few of them in the last few minutes, but I'd like you if you will, take a few more minutes to be a little more specific about the nature of the gap areas, and how they're changing as we look forward to the updated State of Aphasia Report.   Nina: I think the original report definitely raised an awareness of the gaps and aphasia services. Those gap areas remain relevant, so it's not like we're going to drop out gap areas. But the good news is that there's been a surge in the research and the literature relative to some of those gaps. It's typical that there is a significant lag from research and publications to implementing research into actual daily practice. This is what's interesting relative to the update, looking at how those gaps have affected actual daily practice. I think there have been two Podcasts on implementation that aphasia access has presented. One was Rob Cavanaugh talking about issues in implementation back in October, and Natalie Douglas talked about implementation science in 2021. That's significant relative to the gaps and aphasia services that we've recognized. I'll give you an example. A very recent Podcast by Sameer Ashaie addressed mental health and people living with aphasia. Mental health services was a big gap identified in the original 2018 report. Now, as we've updated the report, we find that attention to mental health and daily aphasia practice continues to be a significant gap. Not many SLPs are screening for depression and mental health professionals remain relatively uninformed about how to conduct counseling with people with aphasia. But it's been said that approximately seven or eight years is often the time it takes to move from research to implementing research in daily practice. The good news is that the literature in the area of mental health, for example, has surged since the 2018 report. We found 47 new papers on mental health and aphasia published in just the past five years. That's a typical journey that we see from a gap in service to implementation of the services and awareness of the problem and recognition of the need to change have to happen first. I think we've met that requirement of building awareness of a lot of these gap areas.   Now, we have to focus on how to move from knowledge to action, meaning that SLPs and other health care professionals have to figure out how to address things like mental health in daily practice. I see the report as helping us see where we are on that road to best practices, and possibly pushing faster than the seven-to-eight-year gap in research to practice. Also, one of the gap areas was in SLPs addressing participation in daily practice. A very similar thing seems to have happened in that there's an increase in research in participation-oriented activities and therapy. But the actual practice, according to a survey that we've done recently shows that SLPs are about the same as they were in 2018, relative to actually integrating participation-oriented tasks into daily practices. I think it gives us an outline of where we have to move with this current report.   Jamie: Yes, and that makes me think of some of the work that I'm working on now for the updated version in communication access, which was also a gap area in the original version of the State of Aphasia Report. Something that's really struck me is that over the last five years, so far there's been 25 new communication partner training studies in healthcare settings. That includes training healthcare providers or healthcare students that are going to be working, mostly the studies are in hospitals. That's amazing, in the past five years that's a lot of work that's been done in that area.   But the other thing about that work is that has helped us learn more about the complexity of delivering an intervention like that within a health care system. A lot of the studies that have come out have also showed, by interviewing nurses and other health care staff that have been trained, that even after training healthcare providers still seem to have a really narrow understanding of what communication supports are, or there might be a burden for implementing those into their daily routine care tasks and other things that they're doing. In general, nurses have expressed more critical than positive views about the relevance and the usefulness of communication partner training. It seems like healthcare professionals know the strategies are good. They know they need to use the strategies, but then they kind of get stuck in a place of uncertainty about how to switch up when it doesn't quite go the way that they expect it to go in an interaction. I remember one of the quotes from a paper that talked about this was a nurse saying something like, “I went to use a strategy. I know it didn't work. The patient became increasingly frustrated, and I needed to use a different strategy, but I just didn't know what to do.” So, in thinking about moving forward, it's great that we see this work coming out, but it's a continued focus on shaping these programs and understanding the systems that maybe we need to approach it a little bit differently or make some adjustments so that we're really carrying through with the goal of the intervention and the outcomes are as we expect them to be and are positive.   Janet: This is exactly research into practice. Isn't what you just described, Jamie, much like all the human nature that we do? When we first learn something we're not so sure about it, and we don't quite know what to do when things don't go as we anticipate. The more familiar we become, the better we are at switching up as you say or changing or keeping our goal in mind, which is exactly what I'm hoping that we can talk about and the information in this updated State of Aphasia Report will help clinicians and researchers.   Nina, you mentioned two things that are something that I think about a lot and first of all, was your comment about the Podcast with Rob Cavanaugh. That was my Podcast with him, and we had a wonderful conversation. I love his ideas paying attention to, how do we actually deliver the service and are we doing what we think we are doing? And given the specific confines that we are working within, are we able to achieve the effect that we want, or do we have to make some changes? To me that seems like an important line of thinking and of research coming up about how we can make a difference given what we have or given whatever constraints we have.   The other comment that you made is about depression and mental illness. I think back to my Podcast with Rebecca Hunting-Pompon and some work that she's been doing, really looking at depression and the prevalence of it among people with aphasia, and it's greater than we think. So, your comment about identifying it as a gap area and what we're going to do. How are we going to take research into practice so that we can actually address those points that you're making. Which goes into my next question to ask you, as we look forward to the future of aphasia care, and specifically, as we move from research into practice, how might you see the information in the updated State of Aphasia Report and the gap areas that you'll identify within that publication? How do you see that continuing to guide aphasia care and research?   Nina: I think like the first report, the updated report will continue to raise awareness of major areas of need for people living with aphasia. I think it'll continue to serve as an advocacy tool. I know people have told me that they've pulled out parts of the original report to present to administration, and people have borrowed statistics to put into grants and things like that. So, I think those kinds of activities would continue. The report highlights areas where research is desperately needed. For example, there's a whole section on social isolation in aphasia, and we have data that's grown in the past five years verifying that this is a problem. This updated report shows that we haven't really seen very much in the way of intervention research or models for relevant interventions to address social isolation. I think as people read the report, they'll recognize areas where research is needed, and exactly where models need to look at practical ways to implement these different interventions. The report can highlight those kinds of questions so that researchers and clinicians can begin to address those questions in the next five years. It's just kind of a little push to keep the system moving along to be more efficient and more focused on addressing the needs of people living with aphasia.   Jamie: You know, another thing is, I think it's going to be good as Nina said, directing researchers and clinicians into maybe some practices that we need to make sure that we incorporate whenever we're thinking about what research is valuable, and what research is worth doing and the impact of that research on the people with aphasia. Something that's coming up as maybe a new gap area or continued gap area is the idea of stakeholder engaged research and including people with aphasia in that process. That was another Podcast that we just recently, I think, had in the last month or so. Something that Dr. Jackie Hinckley said that really struck me was that research that's produced in collaboration with stakeholders is efficient, even though it's more time consuming. That's because it has a better chance of making it into actual clinical practice. It can also be incorporated much quicker than research that's solely dictated by the interest of the researcher who likely doesn't have a full understanding of the barriers or the institutional problems that exist in a space. So, that's another idea of just thinking forward in ways that we hope that these gap areas are going to be addressed.   Janet: Both of you just in answering this last question and in things that you've said earlier, have touched upon the concept of how do you go from research to practice and most specifically, in the area of clinician work? It's lovely to say things, but how do you actually do it? How do you implement it? How do you get comfortable with a particular action and being able to change course, if that action is not working? I know it's important for aphasia clinicians and researchers to be mindful of the gap areas in aphasia care and to address them in their work, but that is a charge to us that is sometimes easier said than done. During our Aphasia Access Conversations, we've asked guests for their thoughts on how clinicians and researchers can implement actions in their daily activities to address a gap area. Importantly, we've asked our guests to consider actions that are easy to implement yet may have a broad impact on persons with aphasia or the family or the clinical environment.   I wonder if you would each share with our listeners some of your ideas and thoughts on how aphasia clinicians and researchers can remain mindful of the gap areas in the midst of their busy schedules, and feel comfortable incorporating specific actions? I see, and I know you see it as well, you get busy in a clinical life and all the daily activities, and you start to forget, “Oh yes, I should be mindful of the gap, but I forgot because I had a report to write.” So, I wonder if you could give us some very practical ideas, thinking from the perspective of a clinician and how they can bear in mind the gaps and how their actions might relate to them?   Nina: Well, one of the different things in the updated report from the original report is it will include solutions that are drawn from the research literature. But of course, the problem that you alluded to is much of our research is not always feasible in the whirlwind of everyday practices. I think the message for researchers that Jamie alluded to, is to make the interventions that are being trialed more practical by getting the input of stakeholders, of clinicians, of people with aphasia, to see if they're generalizable to everyday practice.   I think the biggest need is for all of us to remain aware of gap areas, so we're not just thinking about language, but thinking about mood, and family needs and daily lives. Awareness of gaps is the first step towards improving those services. One of the things we used to talk about a lot was long-term and short-term goals. The terminology now is sort of moving towards talking about aims and targets of therapy. Using that terminology, we need to be sure that the aims of therapy, that is the ultimate goals, are stated in terms of participation in chosen life roles or activities, not in terms of WAB scores, or how many words a person can name. In other words, the ultimate targets that are worked on in therapy need to lead to meaningful outcomes. To me, one of the most practical things is for us all to envision goal setting in a way that places us in the position of looking at what gets in the way of those big picture aims. It's not always just things like language problems. It may be other things like confidence, depression, poor support for partners, lack of opportunities to communicate with other people. So, thinking more broadly about those ultimate aims or goals for each person with aphasia helps us see what the most efficient targets are for therapy. If a big barrier is depression, then that needs to be addressed or improved, because word finding won't make any difference if the person is too depressed to engage with other people. I guess what I am saying is, being aware of gaps in services and of the domains that impact life with aphasia helps the clinician to orient to what is needed most for that person, rather than what we habitually just go in and do every day.   Another suggestion is to get help. Going back to the example of the mental health needs. Maybe investing initial energy in training some mental health professionals on your rehab team or in your community how to communicate with people with aphasia, and how to do that kind of specialized counseling that's needed for this population. Then, when somebody pops up and you feel that they're depressed, you have a resource there that you can refer the person with aphasia to, so that it doesn't fall on your own shoulders to manage the depression yourself. The same thing goes with using the rehab team to increase participation. So that whole idea of dividing and conquering. As I said, the updated report shows that SLPs don't focus that much on participation-oriented activities. But if the rehab team all identified a participation goal in unison, that interprofessional kind of approach, and then all worked together towards fulfillment of that aim or participation goal, then it takes a little of the burden off the SLP in their daily frenzy of activity.   Janet: You know, Nina, you gave an excellent example. Another good example and an illustration of that was in a conversation with Mary Purdy a little while earlier this year, where she talked about interprofessional education. One of the goals, which is exactly what you said, was how do you get the rehab team thinking about it? The example that she gave was from her own personal experience about everybody was working towards helping an individual. The problem, what got in the way, the individual wanted to knit and couldn't knit. So how do they all work together, from language, from the occupational therapist, and physical therapist, to remove the obstacles and then allow the rehabilitation to consider. So, that's exactly right. And, Jamie, I know you've got some ideas as well.   Jamie: Well, that was just inspiring. It makes me want to go be a clinician every day again in long term care, because it's just really inspiring to think about change in that way of clinical practice. What came to me when you said easy to implement, but have a broad impact, it brought me back to a paper that I was reading. It's by Mia Loft and colleagues, and it's called, Call for Human Contact and Support. It's a paper about stroke survivors and their experiences in inpatient rehabilitation. Essentially, what they communicated was that they just wanted to be treated like humans. They wanted to be asked how they were doing. They wanted to be talked to like they were a person and not a patient. The really interesting thing was that they felt like these negative experiences really derailed their rehabilitation and motivation to get better, because they were so worried about what was going to happen after they left this place, “What happens when I go home? Am I going to go back to work?” These really negative emotional feelings disrupted the very start of their rehabilitation journey. Instead, what they ended up doing was kind of sitting in isolation most of the time and feeling like their interactions with healthcare workers were negative. That made me think back to the tiny habits talk that Linda Worrall gave at IARC. We as SLPs, we're the models for what good communication looks like in those settings. I think it's kind of our responsibility to start building those habits into our own practices. It might change a little bit of a shift in our view about what therapy looks like, and what's our role in that situation. It might take us recognizing the importance of stopping and asking somebody, how are you doing, but really listening. Maybe starting small with some of those tiny habits and being a model can really influence our other colleagues that we're working with of the importance of these small things in the rehab journey for the patient, especially early on when they're dealing with these emotional consequences of diagnosis.   Janet: You mentioned the word motivation, which of course was another previous Podcast with Mike Biel talking about the role of motivation. Everybody says, “oh yes, yes, motivation is important to consider.” But nobody really does much about it. I mean, how do you know if somebody's motivated or not? To your point about sitting in isolation in the care facility, you can't just say that patient is not motivated, therefore, we're not going to do a particular activity. Until you have a discussion, you don't know. You don't know what they want to achieve, which is back to your comment earlier Nina, about what does this patient want to achieve in the long run? What is the aim here? And if you can have those conversations, find out the motivation, I think you have a greater likelihood of a maximum outcome, positive outcome of the rehabilitation journey.   I thought of something and wonder about this idea. Wouldn't it be fun...well, maybe it wouldn't be fun, I don't know, developing a little sort of cheat sheet or a little card that the Aphasia Access might put out that has these gap areas. If it's cute, designed well, it may be something that clinicians could put on their badge or keep on their clipboards. Instead of having to remember it in their brain, it's all right there in front of them - “Remember about these gap areas is you provide a service to an individual with aphasia.”   Nina: That's a great idea. Little infographic that's something people can carry around and remind themselves. Good idea.   Jamie: Yeah, I love it.   Janet: Well, thank you. Let's see if it comes to pass because it truly is, I think very difficult to bear everything in mind when you're in a busy schedule. Anything that we can do to help a clinician have an easier life, like you don't have to remember the gap areas, they're right here in front of you, we'll see. It's an idea.   As we draw this interview to a close, Nina and Jamie, I wonder if you would each reflect on your work and experience in aphasia rehabilitation, and in preparing the State of Aphasia Reports. Are there a few pearls of wisdom, or lessons learned or words of guidance you might offer our listeners, as they interact with persons with aphasia, and approach aphasia care on a daily basis?   Nina: Well, I'm not sure I have any pearls, maybe some grains of sand to irritate the thought process. I think the first point I would make is understanding, or deeply understanding the values of a life participation approach to aphasia, is critical to achieving relevant and meaningful outcomes. I think the most important clinical skill, and I alluded to this earlier, is knowing how to set meaningful participation goals in collaboration with clients. Once we learn this, then the rest sort of falls into place because you're thinking about the big picture and what is important where. I think that's a key thing is learning how to write those big picture goals, and then see how to get there.   I think everyone involved with aphasia should read Linda Worrall's Seven habits of highly successful aphasia therapists. I think her PowerPoint on that topic that she presented is available on the Aphasia Access website. It's a common sense and elegant outline of the Must Do's for any aphasia therapist. It's seven things that make a good aphasia therapist, and if each item on her list were addressed, we could probably scratch off a bunch of gaps in services. I think that's another one of the things that I would recommend.   Jamie: Yeah, that is a great paper. It's been so influential for me and working with people with aphasia, but training clinicians, it's a great paper. I don't have any pearls of wisdom, either. I guess my only advice and Nina you've probably heard this saying before. This is something that is said down here in Cajun country in our French culture. It's “lache pas la patate”. It means, “don't drop the potato”. Essentially what that means is, even when things get really hard, don't give up. So if you're a clinician working in a situation where it's really hard for you to feel like you can achieve some of the things that we're talking about today, don't give up and know that we're all working towards this goal. We are recognizing these issues. I promise you, we're all thinking about these things, and that we're in it together.   Janet: I love that phrase, Jamie. I'm going to learn to have it trickle off my tongue and I'm going to use it frequently. That's a great idea. Doesn't it really describe how we want to be acting as humans. We're all in this together. Be a human. This person with aphasia is another human and we're trying to help this human with aphasia, given the skills that we possess that they perhaps don't. But they possess skills that we perhaps don't so together, we're on the rehab journey. Say it again, the phrase. “lash……”   Jamie: Lache pas la patate   Janet: Lache pas la patate. We're going to remember that phrase.   Thank you, Nina and Jamie for being part of the Aphasia Access Conversations, and for your efforts in creating the State of Aphasia Reports. I look forward to reading the updated version and seeing how its information will influence aphasia rehabilitation, and how it can assist clinicians and researchers as we continually work to improve care for and partnership with persons with aphasia and their families. I especially, am thankful that we had such a fun conversation, and I learned a new term today. The conversation we had continues to make me mindful of how we interact with everyone in our world, especially those people who have aphasia and their family members. And the people who work with or treat those people who have aphasia and their family members. And thank you to our listeners.   For references and resources mentioned in today's show, please see our Show Notes. They're available on our website, www.aphasiaaccess.org. There you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. For Aphasia Access Conversations, I'm Janet Patterson. Thanks again for your ongoing support of Aphasia Access.   Conversations, Gap Areas, References, and Words to Live By Aphasia Access Conversations Episode #62 - Identifying gaps in aphasia care and steps toward action: A conversation with Aphasia Access Board President Liz Hoover Episode #77: Voltage drop and aphasia treatment: Thinking about the research- practice dosage gap in aphasia rehabilitation: In conversation with Rob Cavanaugh Episode #72: Implementation Science, Aphasia, and Sauce: A Conversation with Natalie Douglas Episode #67: Considering depression in people who have aphasia and their care partners: In conversation with Rebecca Hunting Pompon Episode #89: Aphasia is a complex disorder: Mental health, language, and more – A conversation with Dr. Sameer Ashaie Episode #84: Interprofessional Practice and Interprofessional Education: In conversation with Mary Purdy Episode #69: Motivation and engagement in aphasia rehabilitation: In conversation with Michael Biel Episode #88: Everyone's an expert: Person-centeredness in the clinic and research - A conversation with Jackie Hinckley   2018 State of Aphasia Report - Gap Areas 1.Insufficient awareness and knowledge of aphasia by health care providers and the wider public    2.Insufficient funding across the continuum of care           3.Insufficient availability of communication intervention for people with aphasia (need for services)  4.Insufficient intensity of aphasia intervention across the continuum of care     5.Insufficient attention to life participation across the continuum of care    6.Insufficient training and protocols or guidelines to aid implementation of participation-oriented intervention across the continuum of care            7.Insufficient or absent communication access for people with aphasia or other communication barriers               8. Insufficient attention to depression and low mood across the continuum of care 9. Lack of a holistic approach to community reintegration       10. Failure to address family/caregiver needs including information, support, counseling, and communication training   References Fogg, B.J. (2019). Tiny habits: The small changes that change everything. Boston: Houghton Mifflin Harcourt. Loft, M.L., Martinsen, B., Esbensen, B, Mathiesen, L.L., Iversen, H.K. Poulsen, I. (2019). Call for human contact and support: An interview study exploring patients' experiences with inpatient stroke rehabilitation and their perception of nurses' and nurse assistants' roles and functions. Disability and Rehabilitation, 41:4, 396-404, DOI: 10.1080/09638288.2017.1393698 Worrall, L. (2022). The why and how of integrating mental health care into aphasia services. Presentation to The International Aphasia Rehabilitation Conference, Philadelphia PA: June. Worrall, L. (2019). The seven habits of highly effective aphasia therapists. Presentation to the Aphasia Access Leadership Summit, Baltimore MD: June.   Words to live by Lache Pas La Patate! (Don't Drop the Potato!) This saying means that even when things get difficult, don't give up. It is a testament to the resiliency and enduring spirit of the Cajun people. Cajuns are known for their strong family and community values. During difficult times everyone comes together and helps each other out.    

Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic communication impairments. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer. In this episode, Lyssa Rome interviews Jasvinder Sekhon about her work on enabling SLPs to feel confident and competent in counseling people with post-stroke aphasia and their families.   Gap Areas This episode focuses on on Gap Area 8: Insufficient attention to depression and low mood across the continuum of care.   Guest info   Jasvinder Sekhon is a speech-language pathologist currently working clinically in Melbourne, Australia. Since graduating from La Trobe University in the early 1990s, Jas has worked across the continuum of care in public health services in Victoria, Australia and briefly in Singapore. Jas has been involved in the aphasia community for many years and co-convened the inaugural online Australian Aphasia Association national conference in 2021.   Jas has recently completed her PhD, where she investigated counselling education that enabled SLPs to feel confident and competent using counselling to support the psychological wellbeing of individuals with aphasia and their families after stroke. Jas' supervisors for her doctorate were Professors Jennifer Oates and Miranda Rose from La Trobe University and Professor Ian Kneebone from University Technology of Sydney. Her studies sit under the research program Optimising Mental Health and Wellbeing of the Aphasia Centre for Research Excellence and Rehabilitation. The director of this CRE is Professor Miranda Rose.    Listener Take-aways In today's episode you will: Learn about the stepped model for psychological care. Understand how speech-language pathologists can support psychological well-being for people with post-stroke aphasia. Identify the role of speech-language pathologists within an interdisciplinary team providing psychological care for people with post-stroke aphasia. Show notes edited for conciseness Lyssa Rome Welcome to the Aphasia Access Conversations Podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California, and I see clients with aphasia and other neurogenic communication impairments in my LPAA-focused private practice.   Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.   I'm pleased to be today's host for an episode featuring Jasvinder Sekhon. Jas is a speech language pathologist and PhD candidate at La Trobe University in Australia, and recently submitted her thesis. She currently works part time as the senior SLP at a not-for-profit community health organization in Melbourne. Her studies are part of the research program, Optimizing Mental Health and Wellbeing at the Aphasia Center for Research Excellence. She has been involved in the aphasia community in Melbourne for many years, and is a member of the Australian Aphasia Association. She co-convened the first online Australian Aphasia Association national conference in June, 2021.   Today we'll be discussing Jas's research, which focuses on enabling SLPs to feel confident and competent in counseling people with post-stroke aphasia and their families.   In the Aphasia Access Conversations Podcast, we've been highlighting the gap areas identified in the State of Aphasia report by Dr. Nina Simmons-Mackie. In this episode, we'll be focusing on Gap Area 8, insufficient attention to depression and low mood across the continuum of care. For more information about the gap areas, you can listen to episode number 62, with Dr. Liz Hoover, or go to the Aphasia Access website.   So Jas, what led you to want to study counseling training for speech language pathologists?   Jasvinder Sekhon Firstly, thank you so much to the listeners and to Lyssa for this opportunity. So my impetus for my PhD arose from observing a range of emotional issues occurring frequently in people with aphasia and their families. My clients had issues such as depression, worry, frustration, low confidence, and distress. And despite my many years of experience in the field, there were many times that I felt inadequate to respond adequately or effectively to my clients' emotions.   So in doing this research, I found that I was not alone. Survey studies of SLP practice and post-stroke aphasia rehabilitation from Australia, the US, UK, and South Africa have found that the majority of speech pathologists feel that they have low knowledge, skills, and confidence to assess or manage emotional and psychological well-being in their clients with post-stroke aphasia—and this includes their families. So working with colleagues on the stroke team who had mental health training, such as psychologists and social workers, I learned many counseling techniques, and also learned about counseling approaches and brief therapies that I thought could be useful for speech pathologists in their work.   As part of my PhD studies, I've also undertaken further reading and some short courses in counseling. And I am privileged to have had the supervision of professors Miranda Rose and Jennifer Oates of La Trobe University, and Professor Ian Kneebone, from University of Technology, Sydney, who have a wealth of professional and research experience in the fields of psychology, stroke, and counseling, and speech-language pathology.     Lyssa Rome So can you tell us about an experience that for you points to the value of incorporating the Life Participation Approach to Aphasia into your clinical work? Jas Jasvinder Sekhon Thanks. Yes. So early in my career, I focused on impairment-level therapies. And I think there's evidence to say that's the area that we are most trained in. But I also felt something was missing. An example was one day a client I was treating in her home, literally sent me packing. After day in, day out, I was focusing on just impairment therapy, which was the comfort area. After she threw me out and after tending to my wounded ego and reflecting, I realized that I had not found out what was meaningful to her and what she wanted out of her rehabilitation. I was being very clinician-directed, and I drove the focus of therapy. She was a busy, active, courageous single mother of two teenage girls and had stuff to do and places to go. And I was not addressing her needs, or her wants, for her to fully participate in her life. And my therapy was not aimed at helping her to achieve these life participation goals.   So since then, I have pursued a holistic, biopsychosocial view of aphasia rehabilitation, and I now spend time to ensure I hear the person's story, understand their needs, wants, and goals from speech therapy, and I collaboratively set out an action plan towards meeting these goals. The assessment and management of psychological well-being is an important part of post-stroke aphasia rehabilitation and comes up often in speech therapy. I have certainly found counseling skills to be essential in my clinical practice.   Lyssa Rome Thank you. I feel like most of us in clinical practice would recognize how common it is for people with aphasia to also be dealing with low mood or anxiety. Certainly I, and I think others, worry at times about whether we're really meeting the emotional needs of the people whom we're working with. I know that there's been some attention to this for years. It seems like increasingly researchers in the aphasia community have been thinking more and more about these issues and recognizing their importance. I know this last summer, and IARC, Linda Worrall's keynote address, and other sessions focused on counseling for people with aphasia. Here in the US, ASHA has a new special interest group that's focused on counseling. And those are just two examples. I think that there are many more. I'm wondering how you see awareness of this issue changing?   Jasvinder Sekhon Yeah, the emotional and psychological issues associated with communication disorders have been well-recognized for decades, as you said, and probably since the establishment of the discipline of SLP. The presence of psychological issues after stroke and aphasia is not new. The need for psychological care in post-stroke aphasia is also not new. I think what is changing is, in awareness, I guess, is who is responsible for providing psychological care in stroke services, how this is done, and when this is provided. This includes describing and defining psychological care, that is within the scope of the stroke team, which includes SLPs, and identifying training or education gaps to fulfill these expected roles, and ensuring that the provision of psychological care is ethical and effective.   Thankfully, we have a model that provides evidence-based guidelines that addresses many of these questions. And this model is the stepped model for psychological care after stroke by the UK Government. Professor Ian Kneebone was part of the group that helped develop the psychological care model. Also, the work by Dr. Caroline Baker in translating the stepped model for post-stroke aphasia rehabilitation, highlighted further evidence for rehabilitation interventions specifically to prevent and treat depression in people with mild or no depression within the scope of speech language pathologists.   Lyssa Rome So can you tell us a little bit more about this stepped model?   Jasvinder Sekhon The stepped model for psychological care is a framework for interdisciplinary psychological care after stroke. The stepped model outlines the role and responsibility for the multidisciplinary team in the assessment and management of emotional and cognitive conditions after stroke. Central to this model is that the whole team take responsibility for the identification and management of psychological issues, with clearly established referral pathways to specialist support services in the case of more severe psychological concerns.   There are four levels of the stepped model, and SLPs have a role and responsibility to support psychological care at level one and level two, for those who are experienced and trained. So at level one, there is no psychological disorder present and it's applicable to most or all stroke survivors. So level two describes stroke survivors with mild and transient psychological issues, and can be addressed by experienced speech language pathologists with adequate training, and who are supported by clinical psychologists or neuropsychologists with special expertise in stroke. At level three, and level four, the assessment and management of psychological issues require specialist psychology staff. So the model actually helps speech-language pathologists define their scope of practice in psychological care, and this includes counseling.   Lyssa Rome So that leads me to wonder about the definition of counseling within speech-language pathology. How would you how should we be thinking about it?   Jasvinder Sekhon Counseling is broadly defined as a purposeful conversation arising from the intention of one person, family, or couple, to reflect on and resolve a problem with the help of another person, and in this instance, the speech-language pathologist, to assist in resolving or progressing that problem. It may be helpful to think of all counseling interventions as methods of learning. All approaches used in counseling are intended to help people change. That is, to help them think differently, to help them feel differently, to help them act differently. In other words, in the case of post-stroke aphasia, counseling aims to help the client progress their goal within their rehabilitation journey.   Lyssa Rome Thank you. That's really helpful, I think, to think about it as ways to think differently, feel differently, act differently. And in service of those goals, and the goal of helping people change, I'm wondering what kinds of psychological interventions can speech-language pathologists be expected to provide?   Jasvinder Sekhon So at level one, emotional and psychological issues are mild and transient and don't impact discipline-specific therapy for example, aphasia therapy. At level one, emotional problems resolve quickly, and speech pathologists, as I mentioned before, definitely can support psychological well-being at this level.   Key interventions at level one, include counseling skills, such as active listening, normalizing the emotions and the experience, building effective relationships, providing psychological advice and information to family and peers to facilitate adjustment and build the skills for self-management and for autonomy with the communication issue. Goal-setting, problem-solving, peer support, motivational interviewing, managing stress, routine assessment and review of mood are also recommended at level one. Enabling peer support and positive relationships, including by providing communication partner training, aphasia choirs, and self-management workbooks are also identified at level one.   Lyssa Rome You've just described a bunch of different kinds of interventions that we as SLPs might be providing. But you also said before that many SLPs don't feel confident to assess and manage psychological well-being very effectively. So I'm wondering if you could say a little bit more about that.   Jasvinder Sekhon Yeah, we conducted a systematic review of SLP counseling education in post-stroke aphasia, and found that most universities reported to provide counseling education to SLP students. However, few actually provided counseling education specifically for supporting the psychological well-being in post-stroke aphasia. So it's possible that many speech pathologists may have very little preparation to address the significant emotional and mood issues in people with aphasia after stroke.   We found after speech pathology qualifications, speech pathologists reported a range of counseling education that they received. Some, again, with no training, up to PhD qualifications in counseling. But speech pathologists did report that they received counseling education from working in stroke care—so from their peers in stroke care—and also, many speech pathologists sought further education, professional development, in-services from external sources, counseling courses. So counseling, education and experience, we found, was positively correlated with feeling more knowledgeable, more skilled, and confident for supporting psychological well-being in post-stroke aphasia rehabilitation.   Lyssa Rome With that in mind, and in order to help prepare SLPs to fill that role as you just were describing, you created a counseling education program. Can you tell me a little bit more about that?   Jasvinder Sekhon We designed a counseling education program based on our systematic review of counseling education that speech pathologists currently receive and the stepped model for psychological care after stroke. Our program consisted of seven hours of self-paced learning and it was an online module and a workshop which was three hours, where clinicians practiced their counseling skills with peers. Topics included speech pathologists' role and responsibilities for supporting psychological well-being in post-stroke aphasia rehabilitation within that multidisciplinary team model and within the stepped model for psychological care. We included counseling theory and foundations of counseling skills, and how to apply these to speech pathology practice and specifically to the issues that we were describing common to post-stroke aphasia rehabilitation.   We trialed our counseling education program with 49 practicing speech pathologists in Australia. We measured these outcomes before and after the training program, and also after five weeks of completing the training to see if the effects were maintained. Thankfully, the results of the trial were positive and we did find significant and large effects of the program on speech pathologists' self-efficacy and self-rated competency for counseling in post-stroke aphasia. Also, these effects were maintained at five weeks follow-up for both of the outcomes.   Lyssa Rome That's so exciting. So for those of us who didn't get to participate in your research and who would like to get started now, or would like to brush up on our counseling skills, or deepen our counseling skills, what resources can I and other speech-language pathologists access to help them feel more confident in this area.   Jasvinder Sekhon If you have access to stroke mental health professionals, for example, psychologists or social workers, have a chat with them and organize some training in those level one interventions that were described. Maybe discuss sourcing counseling education from external providers, or your team. Interventions that you could look at sourcing for these inservices could include problem-solving and solution-focused approaches, motivational interviewing, counseling training, foundation counseling skills, for example, behavioral activation, and person-centered counseling. Family sensitive and family therapeutic approaches are also vital and support speech pathologists to provide that level one intervention.   There may be short courses for supporting mental health after stroke available via your National Stroke Association or via ASHA. The new special interest group that you mentioned would also be a fabulous resource for that peer support and professional development. For example, Speech Pathology Australia has teamed up with a local national mental health organization, called Lifeline Australia, to run counseling courses for speech pathologists.   As we have preliminary evidence that our online counseling education program was feasible and effective for improving speech pathologists' confidence for counseling to support psychological well-being in post-stroke aphasia, we are seeking further funding to make this program into a short professional development course for SLPs, and hopefully it will be widely available for anyone who would like to take on this further education.   Lyssa Rome I look forward to that. So when speech-language pathologists are better prepared to address the psychological well-being for our clients who have aphasia, how will our practice look different?   Jasvinder Sekhon It's a great question and a big question. I think ideally, speech pathologists will feel prepared and confident in their role and feel prepared and knowledgeable in their scope of practice in counseling. I think practice guidelines for counseling will be clearer, and clearer in defining scope and boundaries, skills required, and processes for that interdisciplinary practice when addressing the psychological wellbeing of people with aphasia and their families after stroke. Speech pathologists will be able to conduct appropriate screening for social and psychological issues and to know when and how and who to refer to as required.   I think speech pathologists who are appropriately trained will also be able to use a range of counseling skills to support the client to learn communication strategies for participating in conversations relating to all aspects of their lives, as well as strategies for supporting social and psychological well-being. These include strategies for maintaining social networks, building new networks with support from peers, and strategies for coping, adjusting, self-care strategies, and also living well with aphasia. Speech pathologists will also know how to support their own mental health and that of the stroke team members. We also will be able to measure competence for counseling in clinical training and professional practice. This is an area still in its infancy.   I think finally, most importantly, the psychological well-being of people with aphasia and their families will be effectively and efficiently supported from the start of their stroke rehabilitation journey. And risk for mood disorders will be minimized or prevented and positive outcomes enhanced for all domains of health and well-being.   Lyssa Rome I look forward to that day. Jas Sekhon, thank you so much for being our guest on this podcast.   Jasvinder Sekhon It has been my pleasure, Lyssa. Thank you again to Aphasia Access for this opportunity. If anyone has any further questions or comments or would like to find out where things are with our counseling education program, please don't hesitate to contact me via the email, which will be available with this podcast, or through La Trobe University. Thank you again.   Lyssa Rome Great. We'll have that information in the show notes for today's episode. For more information on Aphasia Access and to access our growing library of materials, go to www.aphasiaaccess.org. For a more user-friendly experience, members can sign up for the Aphasia Access Academy, which is free and provides resources searchable by topic or author. If you have an idea for a future podcast series topic, email us at info@ aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.     References and Resources Jasvinder Sekhon on Twitter: @holistic_commn Email: J.Sekhon@latrobe.edu.au   Australian Aphasia Association https://aphasia.org.au/   Centre for Research Excellence in Aphasia Recovery and Rehabilitation, La Trobe University https://www.latrobe.edu.au/research/centres/health/aphasia   Lifeline (Australia) https://www.lifeline.org.au/   Psychological Care After Stroke (NHS) https://www.nice.org.uk/media/default/sharedlearning/531_strokepsychologicalsupportfinal.pdf   Speech Pathology Australia https://www.speechpathologyaustralia.org.au/     Baker, C., Worrall, L., Rose, M., Hudson, K., Ryan, B., & O'Byrne, L. (2018). A systematic review of rehabilitation interventions to prevent and treat depression in post-stroke aphasia. Disability and Rehabilitation, 40(16), 1870–1892. https://doi.org/10.1080/09638288.2017.1315181   Baker, C., Worrall, L., Rose, M., & Ryan, B. (2021). Stroke health professionals' management of depression after post-stroke aphasia: A qualitative study. Disability and Rehabilitation, 43(2), 217–228. https://doi.org/10.1080/09638288.2019.1621394   Doud, A. K., Hoepner, J. K., & Holland, A. L. (2020). A survey of counseling curricula among accredited communication sciences and disorders graduate student programs. American Journal of Speech-Language Pathology, 29(2), 789–803. https://doi.org/10.1044/2020_AJSLP-19-00042   Kneebone, I. I. (2016). Stepped psychological care after stroke. Disability and Rehabilitation, 38(18), 1836–1843. https://doi.org/10.3109/09638288.2015.1107764   National Health Service (NHS), UK. (2011). Psychological care after stroke: improving stroke services for people with cognitive and mood disorders. https://www.nice.org.uk/media/default/sharedlearning/531_strokepsychologicalsupportfinal.pdf   Nash, J., Krüger, E., Vorster, C., Graham, M. A., & Pillay, B. S. (2021). Psychosocial care of people with aphasia: Practices of speech-language pathologists in South Africa. International Journal of Speech-Language Pathology, ahead-of-print, 1–11. https://doi.org/10.1080/17549507.2021.1987521   Northcott, S., Simpson, A., Moss, B., Ahmed, N., & Hilari, K. (2017). How do speech-and-language therapists address the psychosocial well-being of people with aphasia? Results of a UK online survey. International Journal of Language & Communication Disorders, 52(3), 356–373. https://doi.org/10.1111/1460-6984.12278   Parkinson, K. & Rae, J., P. (1996). The Understanding and Use of Counselling by Speech and Language Therapists at Different Levels of Experience. European Journal of Disorders of Communication, 31(2), 140–52. https://doi.org/10.1111/j.1460-6984.1995.tb01757.x   Sekhon, J., Douglas, J., & Rose, M. (2015). Current Australian speech-language pathology practice in addressing psychological well-being in people with aphasia after stroke. International Journal of Speech-Language Pathology, 17(3), 252–262. https://doi.org/10.3109/17549507.2015.1024170   Sekhon, J. K., Oates, J., Kneebone, I., & Rose, M. (2019). Counselling training for speech–language therapists working with people affected by post‐stroke aphasia: A systematic review. International Journal of Language & Communication Disorders, 54(3), 321-346. https://doi.org/10.1111/1460-6984.12455   Sekhon, J. K., Oates, J., Kneebone, I., & Rose, M. L. (2021). Counselling education for speech-language pathology students in Australia: A survey of education in post-stroke aphasia. Aphasiology, ahead-of-print, 1-30. https://doi.org/10.1080/02687038.2021.1967280   Victorino, K. R., & Hinkle, M. S. (2019). The development of a self-efficacy measurement tool for counseling in speech-language pathology. American Journal of Speech-Language Pathology, 28(1), 108–120. https://doi.org/10.1044/2018_AJSLP-18-0012

Welcome to this Aphasia Access Aphasia Conversations Podcast. My name is Janet Patterson. I am a Research Speech-Language Pathologist at the VA Northern California Healthcare System in Martinez, California, and a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their efforts in engaging with persons with aphasia and their families through a variety of educational materials and resources. I am the host for today's episode that will feature Dr. Sarah J. Wallace from Queensland, Australia. These Show Notes accompany the conversation with Dr. Wallace but are not a verbatim transcript. In today's episode you will hear about: clinical meaningfulness and research wastage: defining and addressing, minimal important change: defining and measuring, four “Monday Morning Practices” to create clinically meaningful outcomes.     Dr. Janet Patterson: Welcome to our listeners. Today I am delighted to be speaking with Dr. Sarah J. Wallace from the University of Queensland. In this episode we will be discussing the topic of operationalizing treatment success: what it means, the research efforts supporting this idea, why it is important to think about as we plan and deliver aphasia treatment, and suggestions for implementation in daily clinical practice. Dr. Wallace is an NHMRC Emerging Leadership Fellow, NHMRC Senior Research Fellow in the School of Health and Rehabilitation Sciences at the University of Queensland in Australia. She is also a Certified and practicing Speech Pathologist. Her research interests include communication disability in ageing and enabling and measuring meaningful change in language and communication impairment in individuals with post-stroke aphasia. She uses qualitative and mixed methods to explore the lived experience of communication disability and works in partnership with consumers and clinicians to co-produce clinical interventions and methodological approaches that support the production of meaningful outcomes.   Among her interests in aphasia assessment and rehabilitation is a focus on measurement of aphasia and rehabilitation outcomes, in particular, outcomes that are real and are meaningful to persons with aphasia. Sarah led the ROMA group, Research Outcome Measurement in Aphasia, a group that has published three papers reporting efforts to identify standard outcome measures used in aphasia research. In addition, with colleagues across the world, she published a paper examining methods of operationalizing success in aphasia treatment in research and daily clinical practice. Foremost in this body of work is what I perceive to be Sarah's desire to bring together ideas from persons with aphasia and their family members, assist clinicians and researchers to identify effective and efficient rehabilitation techniques, and to measure treatment outcome in a relevant and scholarly rigorous manner.   Welcome to Aphasia Access Conversations, Sarah, and thank you for joining me today.   Dr. Sarah Wallace: Thanks, Janet, for this invitation.   I would like to start today by acknowledging the traditional owners of the lands from which I'm joining today, the Turrbal and Yuggera people, and pay my respects to their ancestors and their descendants who continue cultural and spiritual connections to country.   Janet: Thank you very much. I appreciate that acknowledgement.   Sarah, throughout your career, you have published papers focusing on aspects of aphasia rehabilitation, many of which explore the topic of measuring and standardizing outcomes in aphasia rehabilitation. How did you become interested in exploring this aspect of aphasia?   Sarah:  Before I completed my PhD, I worked first clinically, as a speech pathologist, and later in a government policy role in the area of aged care quality and safety. I really loved both of these roles for different reasons. As a clinician, I could make a difference at an individual level. But with the government role, I realized the huge impact you can have when you're influencing practice from a systems level. So, when I went on to complete my Ph.D., I really knew that I wanted to do something big picture. At the time, there had been a few big studies coming out with no results. There was a lot of talk about how important it is to get research design right. Then as part of my work at the time, I was reading the World Health Organization, World Report on Disability, and that's where I really started learning about this concept of research wastage and the importance of having a really considered approach to the way we measure outcomes when you want to use data efficiently beyond an individual study. That really appealed to me, particularly given that, within aphasia, we tend to have small sample sizes and really need to make the most of the data that we collect.   Janet: Sarah, we often hear the term clinically meaningful in relation to aphasia outcomes. How would you define that term from the perspective of a person with aphasia? And also, from the perspective of aphasia clinicians and researchers?   Sarah:  This is an excellent question. This is something that I was really interested in during my Ph.D. It's this idea of what is a meaningful outcome. And who actually gets to decide that? And are we measuring what matters to the people who live with aphasia, and the clinicians who work with them? I remember reading at the time, and one of my favorite quotes is from a paper by a researcher called Andrew Long. He says, in practice what actually gets measured depends on who wants the data, and for what purpose. I really think that the idea of clinically meaningful depends on who you're asking, and why you're asking. As an example, in the studies that we conducted with people with aphasia and their family members, they thought improved communication was really important. But they also identified a range of outcomes that related to participation, to attitudes, to psychosocial well-being. But then things change when you look at a different stakeholder group. We also spoke to clinicians and managers around the world, and they identified a range of outcomes. But the really interesting part was that improved language itself wasn't actually considered essential. The top outcome that they came up with actually related to family members, that they understand how to communicate with the person with aphasia. I think what it comes down to is the message that I've really tried to share from my research is that different outcomes matter to different people. And we can measure them in so many different ways. And that this is something that we really have to think carefully about.   Janet: Listening to your responses to these first two questions, I can feel the energy! I can feel this passion looking at aphasia rehabilitation from a larger perspective, outside the actual treatment that gets delivered, and thinking about how we make sure that our treatment is the right thing, and is measuring the right thing, whatever, as you say, the right thing is. It depends on who's looking for the data. You've maintained that focus of how can we become a better entity, better clinicians, if you will, at the broader scope? Does that make sense to you?   Sarah: Yeah, it does, and that idea really resonates with me. I think that's definitely been a feature of the work I've done and the work that I continue to do. It's very focused on collaborative efforts and how we can make the most of what we have, so that we can ultimately improve outcomes for people with aphasia.   Janet: I do think we need to pay attention to this. We cannot just assume that if we give a test pre and post treatment, it is a meaningful outcome to a person with aphasia or to their care partners or to a third-party payer.   Sarah, you have led the ROMA group, that is Research Outcome Measurement in Aphasia. As I mentioned earlier that group published three papers describing standardized assessment measures suggested for use in aphasia rehabilitation outcome studies. Would you briefly describe the genesis of the idea for this work and the studies the group has published?   Sarah: Following on from what I mentioned earlier, this was during my Ph.D. Once I had this idea that I wanted to do something to help reduce research wastage in aphasia, I started reading more about approaches to standardizing outcome measurement and came across the work of the Comet Initiative, which is a group that brings together people who are interested in the development of standardized sets of outcomes, which they refer to as Core Outcome Sets. There's this idea that a Core Outcome Set is essentially the minimum outcomes that should be measured in treatment studies of a particular condition. And that really appealed to me. So, we went from there, we conducted a series of studies looking at different stakeholders, gathering thoughts and perspectives about what an important outcome actually is. We conducted a scoping review of outcome measurement instruments so that we could try and match those outcomes to available tools. And then we've had a number of consensus meetings, where we've tried to pair those two things together.   Janet: I think the work of the ROMA group is important, and being part of that group, it's exciting to watch the minds of people all over the world, contribute their various perspectives, and have discussions about the different measures and the value of the measures. While I think it's wonderful to work at this level, this broad level of perspective, at some point, it has to inform our daily clinical practice. How do you see that happening?   Sarah: Yeah, that's a really good question. Essentially, we conduct treatment research so that we can help clinicians and people with aphasia and their families to make informed decisions about treatments. What's going to help? What's the best treatment for a particular issue and for a particular person? To answer these questions, researchers need to measure the effects that a treatment has on a person, what we refer to as outcomes. When we're measuring different outcomes in different ways it makes it harder to compare data, to combine it across studies, and to draw strong conclusions about which treatments work best.   Core outcomes also need to be relevant, and this is the other part that has been really exciting to me. They should capture results that are important to people who live with that condition. Ultimately, I think that the clinical relevance of the ROMA Core Outcome Set lies in what it is hopefully doing - helping to produce the best evidence that we can get for aphasia treatments, so that those treatments can then be implemented into practice in order to improve the lives of people with aphasia and their families.   Janet: I think that those papers should be required reading for every speech-language pathologist dealing with people with aphasia, and also other rehabilitation professionals, because it helps if we can all be thinking in the same way, as you said, to think about treatment candidacy and does one treatment work better, or for a specific person. or someone with a particular aphasia profile, than another kind of treatment? How do we make good clinical decisions for our patients? That's exactly, I think, what you're saying.   I mentioned also earlier that with several colleagues, you recently published a paper titled Operationalizing Treatment Success in Aphasia Rehabilitation. That paper was published in the journal, Aphasiology. I am a great fan of that paper and would like to begin by asking you why it would be important, in your mind, to operationalize treatment outcomes, given the variability that we see among aphasia patients.   Sarah: Thanks, Janet. And yeah, and this is a great paper. It was led by Caterina Breitenstein and other researchers from the Collaboration of Aphasia Trialists. This paper is really trying to answer the question, “What is a successful outcome from treatment?” What are the ways in which we can actually measure that treatment success? This is such an important question because research will end in clinical practice and so much hinges on this decision? Whether a treatment is successful is going to depend on how we define success and whether we can measure that success in a way that can actually be captured.   Janet: Sarah, in light of your thinking about the different stakeholders, how might operationalizing treatment success differ for the various stakeholder groups that you've identified? That is, people with aphasia, family members, clinical and other medical professionals, medical administrators, and aphasia researchers?   Sarah: This is really that idea that different outcomes are important to different people. If we think about this from a societal perspective, or from a healthcare funders perspective, any treatment that's provided as part of clinical care needs to be cost effective. So that might be something that from a funders point of view is a really important outcome. For clinicians, the ability for someone to take part in conversations and to communicate in different settings and roles is something that, through my research, was identified as an important treatment outcome. Then from the perspective of people with aphasia, not surprisingly, it's improved communication. But it's all these other things as well. It's being able to participate in a conversation. It's having a sense of recovered normality and a feeling of autonomy and independence. So again, I really think it's the idea that it really depends on who you're asking, and the perspective that they're coming from.   Janet: Your comments make me think about work done by Jackie Hinckley and others about stakeholders being part of deciding research questions or research directions. It also makes me think about work done by Michael Biel and others about motivation and engagement. All of these, I think, have a bearing on the research or the clinical enterprise. Are people engaged? Are they willing to commit time and resources to a rehabilitation enterprise because they see value in it, and because they see that there's a likelihood of a good outcome. I believe that what you're doing in terms of thinking about operationalizing helps move us along in that direction.   Sarah: Absolutely. I think that's a really important point, that if someone can't see the relevance of what they're working on in therapy, for example, then they're not going to engage in that process. It really starts with goal setting, and really identifying, working with a person to identify, goals which are really going to be functionally relevant to them and to their day-to-day life. I think if you can get that part right, then everything else follows on from that.   Janet: In your paper, you and your colleagues describe the concept of minimal important change, as a way of determining clinically relevant improvement on an outcome measure, considering the average statistically significant change across groups, as well as statistical significance at the individual level. Can you unpack that concept for us and describe how it relates to daily clinical practice?   Sarah: Yeah, absolutely. This is a really exciting idea, I think. Basically, minimal important change, and it is called different things, but this is the term that we've chosen to use, is the smallest change score above which an outcome is experienced by someone as being relevant or meaningful. I really love this idea, because what we're essentially doing is applying qualitative meaning to quantitative change on an outcome measure. To put this in an example, what this might actually look like, what we're asking is, for example, if I do a Western Aphasia Battery, and then do it again, how many points would actually tell me that that person had experienced a level of meaningful change. So that's what we're trying to work out to determine these benchmarks for meaningful change. We've actually recently received funding for this work, which is really, really exciting. We're going to be undertaking a project, where we use an anchor-based method to establish minimal important change scores for the measures that are in the ROMA Core Outcome Set.   Janet: That makes a lot of sense, because I know in the paper, there are some formulas and statistical representations and discussions that might not be easily familiar to some of our listeners. It was a tough read in some parts of your paper, for sure.   Sarah: Yeah, it is. It's probably not the sort of paper that you sit down and read from start to finish, I think. Some of these concepts are complicated, and they are a bit dense, but I sort of see that paper almost as a reference guide. I think it's the sort of thing that you can come back to, and it does, you know, tend to make more sense over time.   Janet: You did give us one example about operationalizing outcomes with the Western Aphasia Battery and minimal important change. Are there a couple of other examples drawn from this paper that you might share, bringing it to the level of our daily clinical practice?   Janet: Sure. Well, I think, overall, one of the really nice things this paper does, is it actually explains that you can determine treatment success in a number of different ways. We go through concepts around, what approach would we take if we're trying to work out does this treatment work for this particular population, and how well does it work? Then we have different approaches where we're looking at who does it work for, looking at individual change on outcome measures. It really walks you through approaches for group level analysis, looking at mean differences between groups in research trials, versus approaches for determining individual therapy response and outcomes, like minimal important change, and like smallest detectable change.   Janet: Is there an idea or a thought, from this paper and from your work in thinking about operationalizing outcomes that you might give to our listeners that they can put into practice on Monday morning in their clinical practice?   Sarah: Absolutely. This is something I've given a lot of thought about recently, because I think it's one thing to have a very theoretical sort of paper, and to think about the minutiae of all of these issues, but I think for clinical practice it comes down to probably about four different things. (One) I mentioned earlier, I really believe that meaningful outcome measurement starts with shared goal setting. You need to work with your clients to really set meaningful goals that are relevant to them, that they are invested in, and that are going to help them to achieve the outcomes that are important to them.   (Two) The next thing I think, is thinking about, “I have these goals.” We have Clinical Practice Guidelines, we have research evidence, and I would encourage clinicians to use those resources to then really think, “Well, which treatments do we know are effective? Which treatment is most likely to work for the person that I have sitting in my clinic?”   (Three) The next part is when we really get to the measurement part of it, which is really thinking about what you want to measure. Thinking about those goals, thinking about your treatment, where would you expect change to happen following that treatment? Are you looking for a change in function? Or in a behavior? Or is it a feeling, is it confidence that you're trying to change or, someone's emotional wellbeing or an attitude? What is it that you're actually looking to change? (Four) Once you've determined what you want to measure, it's then thinking about what's the most appropriate way of measuring that? For something like confidence, the best way to measure that is that it really has to come from the person themselves. It's a PROM (Patient Reported Outcome Measure), it's patient reported, it's self-report. But there are many other ways that we can measure things: performance on a task; a report from a caregiver or significant other; it could be a clinician rating or report. It's really then thinking about what's the best way of measuring this? There are all these resources out there like the Shirley Ryan Ability Lab, or Stroke Engine. There are websites where they break these measures down and can give you some information about their psychometric properties. Do they measure what they say they measure? Is this tool reliable? Is it sensitive enough to actually pick up change? I think if you can consider all those things, then you're well on the way to successful measurement.   Janet: That's a tall order! But I think it's a good order. Perhaps if we started Monday morning with just one of those things, and felt comfortable implementing shared goal setting for example, and that became an easy-to-do, relevant part of our clinical work, then we might move on to the other points that you're making and gradually incorporate them.   Sarah: Absolutely. I think at a basic level make sure your goals match your outcome measures. Make sure you're measuring what you're actually trying to change, I think is the basic message.   Janet: Sarah, that sounds like a pearl of wisdom to me. What I would like to ask you as we draw this interview to a close, reflecting on your career beyond the ROMA papers and this paper that we've been talking about, operationalizing outcome measures, and reflecting on your research and clinical career, you've just dropped one pearl of wisdom. Are there any others or lessons learned that you would like to share with our listeners?   Sarah: Yeah, sure. Thinking about my career sort of in total, one of the real highlights of it has been collaboration. I think working together is my other pearl of wisdom, so to speak. I think when we work together and we collaborate, we use our efforts to the best, and in the most efficient way possible, we can reduce research wastage, and we can really put our combined efforts towards improving the lives of people with aphasia. Me personally, I'm involved in a group called the Collaboration of Aphasia Trialists and they have a brilliant website. They're a global network of aphasia researchers, with a lot of resources on their website, which are intended for clinicians to use. They have a particular emphasis on multilingual assessment and outcomes and treatment, which is relevant to all of us in the world that we live in. We're often seeing really diverse populations in the clinic. So, I think yeah, that's my other pearl.   Janet: Sarah, I am an ardent recycler and believe in reduce, reuse, recycle. You've mentioned twice now in our chat, about reducing research and clinical wastage. I think that's a great phrase I want to remember, so that we're not continuing to reinvent the wheel, or spending time and money and resources doing things over again, and wasting, I thank you for that term and that idea.   Sarah, thank you also for being my guest, and the guest of Aphasia Access, for this episode of Aphasia Conversations. I enjoyed our conversation, and I will also say, I think we could probably continue to talk for hours about several other topics, especially related to motivation and engagement and measurement, but we'll stop for now. I learned a lot of new things in reading to prepare for our discussion and also listening and talking with you. I think that your work in aphasia rehabilitation and change measurement is important, very important, not just from an academic point of view, or a third-party payer or funding point of view, but most importantly from the patient's point of view, so that we are delivering the best, most effective treatment we can in the most efficient manner. So, thank you for being my guest today.   Sarah: Thank you for having me, it's been a pleasure.   Janet: I also would like to take a moment to thank all of you, our listeners, for your continuing interest in Aphasia Access conversations. As a reminder, check the Show Notes for today's episode for any references or resources mentioned in today's podcast. For more information on Aphasia Access, and to access our growing library of materials, go to www.aphasia.access.org. If you have an idea for a future podcast topic, please email us at info at aphasia access.org. Thank you again for your ongoing support of Aphasia Access                               References, Links, and Podcasts References Biel, M., Enclade, H, Richardson, A., Guerrero, A. & Patterson, J.P. (2022). Motivation in aphasia rehabilitation: A scoping review. American Journal of Speech-Language Pathology, 31,2421-2443. https://doi.org/10.1044/2022_AJSLP-22-00064 Breitenstein, C., Hilari, K., Menahemi-Falkov, M., L. Rose, M., Wallace, S. J., Brady, M. C., Hillis, A. E., Kiran, S., Szaflarski, J. P., Tippett, D. C., Visch-Brink, E., & Willmes, K. (2022). Operationalising treatment success in aphasia rehabilitation. Aphasiology. https://doi.org/10.1080/02687038.2021.2016594 Hinckley, J., Boyle, E., Lombard, D. & Bartels-Tobin, L. (2014) Towards a consumer-informed research agenda for aphasia: preliminary work, Disability and Rehabilitation, 36:12, 1042-1050, https://doi.org/10.3109/09638288.2013.829528  Long, A. F., Dixon, P., Hall, R., Carr-Hill, R. A., & Sheldon, T. A. (1993). The outcomes agenda: Contribution of the UK clearing house on health outcomes. Quality in Health Care, 2 49–52. https://doi.org/10.1136/qshc.2.1.49 Wallace, S. J., Worrall, L., Rose, T., Le Dorze, G., Breitenstein, C., Hilari, K., Babbitt, E.… Webster, J. (2019). A core outcome set for aphasia treatment research: The ROMA consensus statement. International journal of stroke : official journal of the International Stroke Society, 14(2), 180–185. https://doi.org/10.1177/1747493018806200 Wallace, S.J., Worrall, L. Rose, T.A., Alyahya, R.S.W., Babbitt. E., Beeke. S., de Beer, C….Le Dorze, G. (under review). Measuring communication as a core outcome in aphasia trials: Results of the ROMA-2 international core outcome set development meeting. International Journal of Language and Communication Disorders.   Links Collaboration of Aphasia Trialists.  https://www.aphasiatrials.org/ Comet Initiative. http://www.comet-initiative.org/ ROMA COS. Core outcome set for aphasia research – The Collaboration of Aphasia Trialists Shirley Ryan Ability Lab. https://www.sralab.org/ Stroke Engine. https://strokengine.ca/en/   Aphasia Access Podcasts Episode #69: Motivation and engagement in aphasia rehabilitation: In conversation with Michael Biel Episode #88: Everyone's an expert: Person-centeredness in the clinic and research - A conversation with Jackie Hinckley

Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Ellen Bernstein-Ellis, Program Specialist at the Aphasia Treatment Program at Cal State East Bay in the Department of Speech, Language and Hearing Sciences, and a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's hosts for an episode featuring Dr. Arla Good and Dr. Jessica Richardson.        We will discuss the SingWell Project and the role of aphasia choirs from a bio-psychosocial model. Today's shows features the following gap areas from the Aphasia Access State of Aphasia Report authored by Nina Simmons-Mackie:  Gap area #3: insufficient availability of communication intervention for people with aphasia, or the need for services.  Gap area #8: insufficient attention to depression and low mood across the continuum of care.  Gap area #5: insufficient attention to life participation across the continuum of care. Guest Bios: Dr. Arla Good is the Co-director and Chief Researcher of the SingWell Project, an initiative uniting over 20 choirs for communication challenges around the world. Dr. Good is a member of the Science of Music, Auditory Research and Technology or SMART lab at Toronto Metropolitan University, formerly Ryerson University. Much of her work over the last decade has sought to identify and optimize music based interventions that can contribute to psychological and social well-being in a variety of different populations.  Dr. Jessica Richardson is an associate professor and speech-language pathologist at the University of New Mexico in the Department of Speech and Hearing Sciences, and the Center for Brain Recovery and Repair. She is director of the UN M brain scouts lab and the stable and progressive aphasia center or space. Her research interest is recovering from acquired brain injury with a specific focus on aphasia, recovery, and management of primary progressive aphasia. She focuses on innovations in assessment and treatment with a focus on outcome measures that predict real world communication abilities, and life participation. Listener Take-aways In today's episode you will: Learn about the SingWell Project model of supporting choirs and research around the world Learn which five clinical populations are the initial targets of the SingWell Project Discover how the SingWell Project is challenging the stigma about disability and singing Learn about some of the biopsychosocial measures being used to capture choir outcomes Transcript edited for conciseness Show notes Ellen Bernstein-Ellis  02:58 I'm going to admit that aphasia choirs have long been one of my clinical passions. I'm really excited and honored to host this episode today. I'd like to just start with a question or two that will help our listeners get to know you both a little better. So Arla, is it okay, if I start with you? Would you share what motivated you to focus your research on music-based interventions? Do you have a personal connection to music?   Arla Good  03:29 I feel like I could do a whole podcast on how I ended up in this field.   Ellen Bernstein-Ellis  03:33 That'd be fun.   Arla Good  03:34 There's just so many anecdotes on how music can be a powerful tool. I've experienced it in my own life, and I've witnessed it in other lives. I'll share one example. My grandfather had aphasia and at my convocation when I was graduating in the Department of Psychology with a BA, despite not being able to communicate and express himself, he sang the Canadian National Anthem, perfect pitch-- all of the words. It's just an accumulation of anecdotes like that, that brought me to study music psychology. And over the course of my graduate studies, I came to see how it can be super beneficial for specific populations like aphasia.    So, I do have a quote from one of our choir participants that really sparked the whole idea of SingWell. It was a Parkinson's choir that we were working with. And she says, “At this point, I don't feel like my Parkinson's defines me as much as it used to. Now that I've been singing with the group for a while, I feel that I'm also a singer who is part of a vibrant community.” And that really just encapsulates what it is and why I'm excited to be doing what I'm doing--  to be bringing more positivity and the identity and strength into these different communities.   Ellen Bernstein-Ellis  04:49 Yes, the development of positive self-identity in the face of facing adversity is such an important contribution to what we do and thank you for sharing that personal journey. That was really beautiful.  Jessica, I'm hoping to get to hear a little bit about why what your personal connection is to aphasia choirs and music.   Jessica Richardson  05:12 Again, so many things. I grew up in a musical household. Everyone in my family sings and harmonizes and it's just beautiful. But a lot of my motivation for music and groups came from first just seeing groups. So some early experience with groups at the VA. Seeing Dr. Audrey Holland in action, of course, at the University of Arizona-that's where I did my training. Dr. Elman, you, of course, so many great examples that led to the development of lots of groups. We do virtual online groups for different treatments, different therapies. We have space exploration. We have space teams, which is communication partner instruction that's virtual. So we do lots of groups. And of course, we have a neuro choir here in New Mexico. Now, I'm just so excited that there's so much research that's coming out to support it.    Ellen Bernstein-Ellis  06:03 Jessica, can I just give you a little shout out? Because you were visionary. You actually created these amazing YouTube videos of your choir singing virtually, even before COVID. And you came out with the first virtual aphasia choir. I remember just sitting there and just watching it and being amazed. And little did we know. I guess you knew! Do you want to just take a moment because I want to put those links in our show notes and encourage every listener to watch these beautiful virtual choir songs that you've done. You've done two right?   Jessica Richardson  06:44 Yes. And I could not have done it, I need to make sure I give a shout out to my choir director, Nicole Larson, who's now Nicole Larson Vegas. She was an amazing person to work with on those things. She also now has opened a branch neuro choir, just one town over. We're in Albuquerque and she's in Corrales and our members can go to either one. We coordinate our songs.    I'd really like to start coordinating worldwide, Ellen. We can share resources and do virtual choirs worldwide and with Aphasia Choirs Go Global. But I definitely want to give her a shout out. And then of course our members. I mean, they were really brave to do that. Because there was nothing I could point them to online already to say, “Hey, people are doing this. You do it.” So they were really courageous to be some of the first.   Ellen Bernstein-Ellis  07:36 Do you want to mention the two songs so people know what to look for? And just throw in the name of your choir.   Jessica Richardson  07:42 We're just the UNM neuro choir as part of the UNM Brain Scouts. The first song was The Rose. The second song was This is Me from the Greatest Showman. And the song journal that you could wait for in the future is going to be Don't Give Up On Me by Andy Grammer.    Ellen Bernstein-Ellis  08:01 Beautiful! I can hardly wait. And there are some endeavors and efforts being made to create these international groups. Thank you for doing a shout out to Aphasia Choirs Go Global, which is a Facebook group to support people who are involved in neuro and aphasia choirs. I'll give a shout out to Bron Jones who helped start it and Alli Talmage from New Zealand who has worked really hard to build a community there. It's been really wonderful to have a place where we can throw out questions to each other and ask for opinions and actually dig into some interesting questions like, “What measures are you using to capture X, Y, or Z?” I think we'll get to talk about some of that today, actually. So thank you.    I encourage our listeners to listen to those two YouTube videos we'll put in the show notes. But Jessica, I'm going to give you a twofer here. I've been following your amazing work for many years, but the first time I got to meet you in person was at an Aphasia Access Leadership Summit. I wanted to ask you as an Aphasia Access member, if you have any particular Aphasia Access memories that you could share with our listeners?   Jessica Richardson  09:09 Well, it was actually that memory. So, I would say my all-time favorite collection of Aphasia Access moments, really was working with my amazing colleague, Dr. Katerina Haley. She's at UNC Chapel Hil. We were co-program chairs for the Aphasia Access 2017 summit in Florida. The whole summit, I still think back on it and just smile so wide. And you know, we went to the museum, we were at the Aphasia House, just so many wonderful things. All of the round tables and the presentations, they just rocked my world. And it's just something I'm super proud to have been a part of behind the scenes making it happen. And I also remember that you wrote me the nicest note afterwards.    Ellen Bernstein-Ellis  09:54 It was just because it impacted me, too. Personally, I felt like it just cracked open such a world of being able to have engaging discussions with colleagues. Tom Sather, really named it the other day (at IARC) when he quoted Emile Durkheim's work on collective effervescence, the sense of being together with a community. I'm seeing Arla, nodding her head too.   Arla Good Yeah, I like that.   Ellen Bernstein-Ellis   Yeah, there was a lot of effervescing at these Leadership Summits, and we have one coming up in 2023. I'm really excited about it and hope to get more information out to our listeners about that. So I'll just say stay tuned. And you'll be hearing more, definitely.   I just want to do one more shout out. And that is, you mentioned international collaboration. I'd like to do a quick shout out to Dr. Gillian Velmer who has been doing the International Aphasia Choirs. I'll gather a couple of links to a couple of songs that she's helped produce with people around the world with aphasia singing together. So there's just some great efforts being done.    That's why I'm excited about launching into these questions. I want to start with an introduction of SingWell. Arla, would you like to get the ball rolling on that one?   Arla Good  11:09 For sure. SingWell began with my co-director, Frank Russo, and myself being inspired by that quote I shared at the beginning about singing doing something really special for these communities. We applied for a Government of Canada grant and we received what's called a Partnership grant. It really expanded well beyond just me and Frank, and it became a network of over 50 researchers, practitioners, national provincial support organizations, and it continues growing.    It's really about creating a flow of information from academia to the community, and then back to academia. So understanding what research questions are coming up in these communities of interests. And what information can we, as researchers, share with these communities? That's SingWell, I'll get into the research questions.   Ellen Bernstein-Ellis  12:03 Let's dive in a little bit deeper. What is SingWell's primary aim?  That's something you describe really well in an article we'll talk about a little later.   Arla Good  12:15 So our aim is to document, to understand, group singing as a strategy, as a way to address the psychosocial well-being and communication for people who are living with communication challenges. SingWell, we're defining a communication challenge as a condition that affects an individual's ability to produce, perceive or understand speech. We're working with populations like aphasia, but also people living with hearing loss, lung disease, stuttering. I hope, I don't forget anybody. There are five populations. Parkinson's, of course.   Ellen Bernstein-Ellis  12:53 Perfect. So that's your primary aim. Do you want to speak to any secondary or additional goals for your project?   Arla Good  13:03 The second major pillar of this grant is to advocate and share the information with these communities. So, how can we facilitate the transfer of this knowledge? We've started a TikTok channel, so you can watch videos. We have a newsletter and a website that's continuously being updated with all the new information. We want to develop best practice guides to share with these communities about what we've learned and how these types of choirs can be run. And really, just mobilize the network of partners so that we're ensuring the information is getting to the right community.   Ellen Bernstein-Ellis  13:35 Wow. Well, I mentioned a moment ago that there's a 2020 article that you wrote with your colleagues, Kreutz, Choma, Fiocco, and Russo that describes the SingWell project protocol. It  lays out your long term goals. Do you want to add anything else to what you've said about where this project is headed?   Arla Good  13:54 Sure, the big picture of this project is that we have a network of choirs that are able to address the needs of these different populations. I want the network to be dense and thriving. The home of the grant is Canada. But of course, we have partners in the states, like Jessica, and in Europe and in New Zealand. So to have this global network of choirs that people can have access to, and to advocate for a social prescription model in healthcare. Have doctors prescribing these choirs, and this network is available for doctors to see, okay, here's the closest choir to you. So, in some ways, this is a third goal of the project is to be building this case for the social prescription of singing.    Ellen Bernstein-Ellis  14:41 Before we go too much further, I want to acknowledge that you picked a wonderful aphasia lead, Dr. Jessica Richardson. That's your role, right? We haven't given you a chance to explain your role with SingWell. Do you want to say anything about that Jessica?   Jessica Richardson  14:58 Yeah, sure. I'm still learning about my role. Overall, I know theme leaders, in general, were charged with overseeing research directions for their theme. Aphasias, the theme that I'm leader of, and then monitoring progress of research projects and the direction of that. So far, it's mostly involved some advising of team members and reviewing and giving feedback of grant applications. I'm supposed to be doing more on the social and networking end and I hope to be able to make more that more of a priority next year, but I do think this podcast counts. So thank you for that.    Ellen Bernstein-Ellis  15:33 Well, you did a wonderful presentation. I should be transparent, I was invited to be on the Advisory Committee of SingWell, and I got to hear your first presentation at the first project meeting where each team leader explained their focus and endeavor. I was so excited to hear the way you presented the information on aphasia, because again, we know that for some people, aphasia is not a well-known name or word. And even though this is a very educated group, and I think everybody, all the leaders know about aphasia, but it was nice to see you present and put on the table some of the challenges and importance of doing this research.    One of the things that really attracted me when reading about that 2020 article is that you talk about SingWell having an ability versus disability focus early, Arla, could you elaborate on that?   Arla Good  16:22 Our groups are open to anybody, regardless of their musical, vocal or hearing abilities. And we compare it often to the typical talk-based support groups that focuses on challenges and deficits. Of course, there's a time and place, these can provide a lot of benefit for people living in these communities. So, this isn't a replacement for these types of support groups,  But, singing is a strength-based activity. They're working together to create a beautiful sound and there's often a performance at the end that they're very proud of. We're challenging stigma, especially in a population like aphasia, where it would seem like, oh, you have aphasia, you can't sing? But, of course they can. We're challenging that stigma of who can sing and who can't sing. We find that it's just so enjoyable for these people to be coming and doing something strength- based and feeling good. Going back to that, quote I said at the beginning, right? To feel like there's more to their identity than a diagnosis. This is what keeps them coming back.    Ellen Bernstein-Ellis  17:22 Beautifully said, and I can't help but think how that really connects with the life participation approach. There's no one better than Jessica, for me to throw that back out to her, and ask how she sees the connection between that.   Jessica Richardson  17:37 Yes, absolutely. Their focus on ability and fighting loneliness and isolation and on social well-being is right in line with it. Because LPAA is really focusing on reengagement in life, on competence, rather than deficits, on inclusion, and also on raising the status of well-being measures to be just as important as other communication outcomes.    I want to make sure we also bring up something from our Australian and New Zealand colleagues, the living successfully with aphasia framework, because it is also in line with LPAA and SingWell. I can say they have this alternative framework. They also don't want to talk about the deficit or disability. It doesn't try to ignore or even minimize the aphasia, but it emphasizes positive factors, like independence, meaningful relationships, meaningful contributions, like you know that performance. So there's just so much value and so much alignment with what Aphasia Access listeners and members really care about.    Ellen Bernstein-Ellis  18:44 That's a great transition for what I was thinking about next. I was very excited to see people talking about the 2018 review by Baker, Worrall, Rose and colleagues that identifies aphasia choirs as a level one treatment in the step psychological care model for managing depression in aphasia. So that's really powerful to me, and we're starting to see more research come out looking at the impact of participating in aphasia choirs. I'm really excited to see some of this initial research coming out.    Maybe you can address what some of the gaps in the literature might be when it comes to group singing? And its impact on well-being. Maybe Arla, we can start with that and then Jessica, you can jump in and address specifically communication and aphasia choirs. Arla, do you want to start out?   Arla Good  19:35 This is a very exciting time, like you said, there is research that is starting to come out. People are starting to study choirs as a way of achieving social well-being, psychological well-being and so the field is ripe and ready for some good robust scientific research.    Most of the studies that are coming out have really small sample sizes. It's hard to get groups together, and they often lack comparison groups. So what I think SingWell is going to do is help understand the mechanisms and what is so great about singing and what singing contributes. The other thing I'd like to mention is that with SingWell, our approach is a bit unique compared to what some of the other research researchers are doing, in that we're adopting a very hands-off approach to choir. So we're letting choir directors have the autonomy to organize based on their own philosophies, their expertise, and the context of their choirs. So we call it choir in its natural habitat.   And this is giving us the opportunity to explore group effects. What approach is the choir director taking and what's working, what's not working? And to have this large sample of different types of choirs, we can learn a lot from this number, this type of research project as well.   Ellen Bernstein-Ellis  20:54 What I really love about that is getting to know some of these wonderful colleagues through Aphasia Choirs Go Global and hearing about what their rehearsals and goals look like. There are some amazing similarities, just like saying, “You're doing that in Hungary? But we're doing that here, too.”  And there are some wonderful differences. I really firmly believe that there are a variety of ways to do this very successfully, just like there are a variety of ways to run successful aphasia groups, but there's going to be some core ingredients that we need to understand better.    Just before I go too far away from this, how about you? Do you want to speak to anything we need to learn in the literature about aphasia choirs?   Jessica Richardson  21:35 Yeah, I mean, I don't think I'm saying too much different than Arla. Arla, may want to follow up. But the main gap is that we just don't have enough evidence. And we don't have enough, like she said, solid methodology, high fidelity, to even support its efficacy to convince stakeholders, third party payers, etc. Anecdotal evidence is great, and YouTube videos that we create are also great, but it's not enough. And even more and more choirs popping up around the world, it's not enough.   We need that strong research base to convince the people that need convincing. SingWell is hoping to add to that through its pilot grants, through its methodology that they share for people to use. And I'm hopeful that other organizations, you know, like Aphasia Choirs Go Global, can link up at some point with saying, “Well, I'm excited about communities like that that are also supportive of researching choirs.” Arla, think I saw you're wanting to follow up.   Arla Good  22:31 I just wanted to add to something that Ellen had said about the power and diversity and having these different perspectives. And another goal of SingWell is to create, and it's up on the website already, it's a work in progress, it's going to continue growing, but a menu of options for choir directors who are looking to start a choir like this. Like if you want this kind of goal, here are some tips. So, if it's a social choir, you might want to configure the room in a circle. But if you have musical goals, maybe you want to separate your sopranos, your altos, tenors, and your bass. It's not one prescribed method. It's a menu of items that we're hoping we can through, this diversity of our network, that we can clarify for people who are trying to start a choir for themselves.   Ellen Bernstein-Ellis  23:19 I love that because I can hear in my head right now, Aura Kagan saying over and over again that the life participation approach is not a prescriptive approach. But rather, you're always looking at what is the best fit for your needs. Jessica, your head is nodding, so do you want to add anything?   Jessica Richardson  23:37 It's a way to shift your whole entire perspective and your framework. And that's what I love about it.   Ellen Bernstein-Ellis  23:44 We'll just go back to that 2020 article for a moment because I really liked that article. You and your authors describe four measures of well-being and there are potential neuroendocrinological, that's really a lot of syllables in here, but I'll try to say it again, neuroendocrinological underpinnings,    Arla Good   The hormones---   Ellen Bernstein-Ellis   Oh, that's better, thank you, the hormones, too. Could you just take a moment and please share what these four measures of well-being and their hormonal underpinnings might be?   Arla Good  24:11 For sure. The first one is connection, the connectedness outcome. So we're asking self-report measures of how connected people feel. But we're also measuring oxytocin, which is a hormone that's typically associated with social bonding.    The second measure is stress. And again, we're asking self-report measures, but we're also looking at cortisol, which is a hormone associated with stress.    The third measure is pain. And this one's a little bit more complex, because we're measuring pain thresholds. Really, it sounds scary, but what we do is apply pressure to the finger and people tell us when it feels uncomfortable. So it's actually well before anyone's experiencing pain. But we're thinking that this might be a proxy for beta endorphin release. So that's the underpinning there.    And then the last outcome is mood. This is also a self-report measure. And one of the types of analyses that we're running is we want to see what's contributing to an improved mood. Is it about the cortisol? Is it about just like deep breathing and feeling relaxed? Is it that or is there something special happening when they feel the rush of oxytocin and social connectedness? The jury's still out. These are super preliminary data at this point, especially with oxytocin, there's so much to learn. But those are some of the hormones, the sociobiological underpinnings that we're exploring.   Ellen Bernstein-Ellis  25:31 That makes for some really exciting research and the way you frame things, SingWell is supporting grants, maybe you could comment on how its biopsychosocial framework influences the methods and outcome measures that you want to adopt.   Arla Good  25:48 Sure, we do provide guidelines and suggestions for measures. Jessica alluded to this. We have it all up on the website, if anyone else wants to run a study like this. And then we have some that we're requiring of any study that's going to be funded through SingWell. And this is so we can address this small sample size problem in the literature. So the grant runs for six more years. It's a seven year grant. And at the end, we're going to merge all the data together for one mega study. We want to have some consistency across the studies, so we do have some that are required. And then we have this typical SingWell design. We're offering support for our research team, from what a project could look like.   Ellen Bernstein-Ellis  26:28 Well, this podcast typically has a wonderful diverse demographic, but it includes researchers. and clinical researchers who collaborate. So, let's take a moment and have you describe the grant review process and the dates for the next cycle, just in case people want to learn more.   Arla Good  26:45 Sure, so we are accepting grants from SingWell members. So the first step is to become a SingWell member. There is an application process on the website. We have an executive committee that reviews the applications twice a year, the next one is in scheduled for November. There's some time to get the application together. Once you're in as a member, the application for receiving funding is actually quite simple. It's basically just an explanation of the project and then it will undergo a review process. Jessica is actually one of our reviewers, so she can speak to what it was like to be a reviewer,   Ellen Bernstein-Ellis  27:21 That would be great because, Jessica, when you and I chatted about it briefly, I've never heard a reviewer be so excited about being supportive in this process. So please share a little bit more because I thought your perspective was so refreshing and positive.    Jessica Richardson  27:36 I have to say too, I have definitely benefited from having some amazing reviewers in my own lifetime. I definitely have to point out one who was so impactful, Mary Boyle, her review, it was so thorough, and it was so intense, but it elevated one of my first endeavors into discourse analysis to just like a different level. And just the way that she treated it as a way to help shape, she was so invested, in just making sure that we were the best product out there. I learned what the world needed to learn. I definitely learned a lot from that experience and from other reviewers like her that I've benefited from.    As a reviewer, whenever I review anything, I try to keep that same spirit. So when I was doing SingWell reviews, I made sure that I revisited the parent grant. I did a really good, thorough reread. I provided feedback and critiques from the lens of how does this fit with SingWell's aims? And, how can it be shaped to serve those aims if it isn't quite there yet? So it's never like, “Ah, no, this is so far off”, it was just like, “Oh, where can we make a connection to help it fit?” Then trying to provide a review that would be a recipe for success, if not for this submission cycle, then for the next.    And as a submitter, even though I mean, we didn't have a meeting to like all take this approach. But I felt that the feedback that I received was really in that same spirit. And so I love feedback in general. I don't always love the rejection that comes with it. But I do love stepping outside of myself and learning from that different perspective. And I've really just felt that this thing while reviewers were invested, and were really just interested in shaping submissions to success,   Ellen Bernstein-Ellis  29:24 That's really worthwhile, right? So you get something, even if you're not going to get funding. You still get to come away with something that's valuable, which is that feedback.    We've been talking about measures and I'm really interested in that as a topic. Jessica, could you take a moment and share a little bit about how SingWell's pre/post measures are being adopted for aphasia?  We all know that's some of the challenges. Sometimes, some of the measures that we use for mood, connectivity, or stress are not always aphasia-friendly. So what does that process look like?   Jessica Richardson  29:59 I will say they did their homework at the top end, even before the proposal was submitted. Really having you on the advisory board, and I was able to give some feedback on some of the measures. Some of the measures they've already selected were specific to aphasia. For Parkinson's disease, there are Parkinson's disease specific measures and for stuttering, specific measures. And for aphasia, they picked ones that are already aphasia-friendly. What I was super excited about too, is that they included discourse without me asking. It was already there. I think we helped build it to be a better discourse sample and we've added our own. So it's already in there as their set of required and preferred measures. But the other thing is that the investigator, or investigators, have a lot of latitude, according to your knowledge of the clinical population that you're working with, to add outcomes that you feel are relevant. That's a pretty exciting aspect of getting these pilot funds.    Ellen Bernstein-Ellis  30:58 So there's both some core suggested measures, but there's a lot of latitude for making sure that you're picking measures that will capture and are appropriate to your particular focus of your projects. That's great. Absolutely.   Jessica Richardson  31:09 I definitely feel that if there were any big issue that we needed to bring up, we would just talk to Arla and Frank, and they would be receptive.   Ellen Bernstein-Ellis  31:20 I've been very intrigued and interested in attempts to measure social connectedness as an outcome measure. You speak about it in your article, about the value of social bonding and the way music seems to be a really good mechanism to efficiently create social bonding. Is there something about choir that makes this factor, this social connectedness, different from being part of other groups? How are you going to even capture this this factor? Who wants to take that one?     Arla Good  31:50 I do, I can talk, we can do another podcast on this one.   Jessica Richardson  31:55 It's my turn, Arla. I'm just kidding (laughter).   Ellen Bernstein-Ellis  32:01 You can both have a turn. You go first, Arla,  And then Jessica, I think you will probably add,   Jessica Richardson  32:04 I'm totally kidding (laughter).   Ellen Bernstein-Ellis  32:06 Go ahead, Arla.   Arla Good  32:07 This is what I did my dissertation on. I truly believe in the power of group music making. So singing is just an easy, accessible, scalable way to get people to move together. It's consistent with an evolutionary account that song and dance was used by small groups to promote social bonding and group resiliency. I've seen the term collective effervescence in these types of writings.    When we moved together, it was like a replacement for in our great ape ancestors, they were one on one grooming, picking up the nits in each other's fur. Human groups became too large and too complex to do one on one ways of social bonding. And so we needed to develop a way to bond larger groups rapidly.    And the idea here is that movement synchrony, so moving together in precise time, was one way of connecting individuals, creating a group bond. Singing is just a fun way of doing that. I've been studying this for about 15 years and trying to understand. We've pared it down, right down to just tapping along with a metronome, and seeing these types of cooperation outcomes and feelings of social bonding, connectedness. I do think there's something special, maybe not singing specifically, but activities that involve movement synchrony. We could talk about drumming, we could talk about dance, I think that there is a special ingredient in these types of activities that promote social bonds.   Jessica Richardson  33:37 There's been some of us even looking at chanting, there's research about that as well.    Arla Good   We should do a SingWell study on chanting!   Ellen Bernstein-Ellis  33:43 Jessica, what else do you want to add about what is important about capturing social connectedness? Or, how do we capture social connectedness?     Jessica Richardson  33:53 I think I'll answer the first part, which is, what is special about thinking about it and capturing it. It's something that we've slowly lost over decades and generations, the communal supports. Our communities are weakened, we're more spread out. It's also a way of bringing something back that has been so essential for so long. We've weakened it with technology, with just all the progress that we've made. It's a way to bring something that is very primitive and very essential back. So, that doesn't totally answer your question, though.   Ellen Bernstein-Ellis  34:31 When we think about the isolation related to aphasia and the loss of friendship, and some of the wonderful research that's coming out about the value and impact of friendship on aphasia, and then, you think about choirs and some of this research--I believe choir is identified as the number one most popular adult hobby/activity. I think more people are involved in choirs as an adult. It's not the only meaningful activity, but it's a very long standing, well developed one,   Jessica Richardson  35:03 We have to figure out how to get the people though who will not touch a choir with a 10 foot pole?   Ellen Bernstein-Ellis  35:08 Well, we will continue to do the work on the other groups, right, that suits them very well. You know, be it a book club, or a gardening group, or a pottery class, or many, many, many other choices.   Jessica Richardson  35:21 Or a bell choir?   Ellen Bernstein-Ellis  35:24 Bell choirs are great, too.    Do either of you want to speak to what type of measures captures social connectedness or what you're using, or suggesting people try to use, for SingWell projects?   Jessica Richardson  35:38 I think Arla already captured some of those with those markers that she was talking about earlier. Hormonal markers. But the self-report questionnaires, and that perspective. There's other biomarkers that can very easily be obtained, just from your spirit. So I think that's going in the right direction, for sure.   Arla Good  35:59 Yeah, we've also looked at behavioral measures in the past like strategic decision making games, economic decision making games, and just seeing if people trust each other, and whether they're willing to share with each other. We've asked people how attractive they think the other people are. Questions like this that are capturing the formation of a group, whether they're willing to share with their in-group.  It's a question of in-group and out-group, and what are some of the effects of the in-group.     Jessica Richardson  36:26 And we're definitely exploring too, because we do a lot of neurophysiological recording in my lab. Is there a place for EEG here? Is there a place for fNIRS, especially with fNIRS, because they can actually be doing these things. They can be participating in choir, we can be measuring things in real time. While they're doing that, with the fNIRS-like sports packs, so sorry, fNIRS is functional near-infrared spectroscopy in case some of the listeners aren't sure.   Ellen Bernstein-Ellis  36:52 I needed help with that one too. Thank you.    I'm thinking about some of the work done by Tom Sather that talks about the sense of flow and its contribution to eudaimonic well-being, right? I think that's a key piece of what SingWell is looking at as well. It's exciting to look at all these different measures, and all these different pillars that you are presenting today.    And if people want to find out more about SingWell, do you want to say something about your website, what they might find if they were to go there?   Arla Good  37:25 Yes, go to the website, SingWell.org, pretty easy to remember. And on the website, you'll find all the resources to run a research study, to apply to be a member. We have resources for choir directors who are looking to start their own choir, we have opportunities to get involved as research participants if you're someone living with aphasia, or other communication challenges. There's lots of opportunities to get involved on the website. And you can sign up for our newsletter and receive the updates as they come and check out our website.   Ellen Bernstein-Ellis  37:57 That's great. I certainly have been watching it develop. And I think it has a lot of really helpful resources. I appreciate the work that's been put into that. How do people get involved in the SingWell project? You mentioned earlier about becoming a member. Is there anything else you want to add about becoming engaged with SingWell?    Arla Good  38:18 I think the ways to become involved, either becoming a member or starting a choir using the resources, or like I said, signing up for the newsletter just to stay engaged. And as a participant, of course, doing the surveys or signing up for a choir if you're one of the participants called.   Ellen Bernstein-Ellis  38:35 Thank you. I'm was wondering if you'd share with the listeners any sample projects that are underway.    Arla Good  38:46 For sure. So we have five funded studies this year. We have one ChantWell, which Jessica spoke about, assessing the benefits of chanting for breathing disorders. That's taking place in Australia. The effects of online group singing program for older adults with breathing disorders on their lung health, functional capacity, cognition, quality of life, communication skills and social inclusion. That is in Quebec, Canada. The third study, the group singing to support well-being and communication members of Treble Tremors. That's a Parkinson's choir taking place in Prince Edward Island, Canada. The fourth is how important is the group in group singing, so more of a theoretical question looking at group singing versus individual singing, an unbiased investigation of group singing benefits for well-being and that's also in Quebec. And then last but not least, I saved it for last, is our very own Jessica Richardson's group singing to improve communication and well-being for persons with aphasia or Parkinson's disease. So I thought I might let Jessica share, if she's open to sharing some of what the research study will entail.   Jessica Richardson  39:53 Oh, yes, thank you. When we first started our neuro choir, I had envisioned it as being an aphasia choir. And we had so much need in the community, from people with other types of brain injury. Our Parkinson's Disease Association, too, has really been reaching out ever since I've moved here. They have a group actually, they're called the Movers and Shakers, which I really love. So, we have a pretty healthy aphasia cohort of people who are interested, who also, you know, taking a break and only doing things virtually if they are interested, you know, since COVID. And then we have our Parkinson's cohort here as well, the Movers and Shakers, were following the suggested study design, it's a 12 week group singing intervention. They have suggestions for different outcome measures at different timescales, we're following that and adding our own outcome measures that we also feel are relevant. So we have those measures for communication and well-being, including the well-being biomarkers through the saliva. As she mentioned, already, we have latitude for the choir director, like who we want to pick and what she or he wants to do. We already have that person picked out. And we already know, and have all of that stuff figured out. There is some guidance, but again, flexibility for our session programming. And we have the choices over the homework programming, as well. We are really looking at this choir in the wild, and looking at those outcomes with their measures. So we're excited about it.   Ellen Bernstein-Ellis  41:22 I think you've just thought of a great name for a future aphasia choir, which is a “neuro choir choir in the wild”   Jessica Richardson  41:30 Well, out here, we're a choir in the wild, wild west.   Ellen Bernstein-Ellis  41:34 There you go. Absolutely. What have been some of the most surprising findings of the benefits of singing so far that have come in through the SingWell project? Either of you want to take that on?   Arla Good  41:46 I don't know if it's the most surprising, but it's definitely the most exciting. I'm excited to continue unpacking what's happening with oxytocin, I think it's a pretty exciting hormone, it's pretty hot right now. It's typically associated with being like a love hormone. They call it associated with sex, and it's associated with mother-infant bonding. If we can find a way that's not mother-infant or pair bonding to release oxytocin, that's very exciting. If group singing is one of those ways to promote this sense of “I don't know where I end and you begin, and we're one” and all those loving feelings. As Jessica mentioned, the missing piece, and how we relate to each other in a society, choir might be an answer to that. I'm really excited about the oxytocin outcome measure. Again, it's still very early, I don't want to say definitively what's happening, but it's a pretty exciting piece.   Jessica Richardson  42:45 I have a future doctoral student that's going to be working on this. That is the part she's most interested in as well..   Ellen Bernstein-Ellis  42:52 So there are some really good things that, hopefully, will continue to tell us what some of these benefits are and that it's important to fund and connect people to these types of activities. You said, this is like year one or two of a 6 year project, was that right? Or is it seven year?   Arla Good  43:09 It's seven year.   Ellen Bernstein-Ellis  43:10 So what is your hope for the future of the SingWell project?   Arla Good  43:15 The secondary goals would be the hope for the future, of actually creating change in the communities and getting people to think outside the box of providing care. Is there a choir that can be prescribed nearby? Is there a way to train these choir directors so that they have the correct training for this specific population? So drawing from the knowledge from speech- language therapy, from choir direction, from music therapy-   Ellen Bernstein-Ellis  43:42 Music therapy, right.   Arla Good  43:43 Of course, of course. So creating an accreditation program and training choir directors to lead choirs like this, and having this army of choir directors around the world that are doing this. So, this is a big goal. But that's what I hope to see.   Ellen Bernstein-Ellis  44:00 That's fantastic. And I think there's some researchers who are really working hard at looking at protocols and asking these questions. And I know, I've been inspired by some of the work that Ali Talmage is doing in New Zealand that's looking at some of these questions. And, Jessica, do you want to add what's your hope is as aphasia lead? Or, what you're thinking about for the SingWell project that you're excited about?   Jessica Richardson  44:21 We have to generate that evidence that we need and mentioning again, those 10 foot pole people, to reach out to let people know that choirs aren't just for people who think that they can sing. We definitely have had some very energetic and enthusiastic choir members who think that they can sing and cannot, and they're still showing up. Maybe you're the one who thinks that choirs aren't for you. If we can generate enough energy, inertia, and evidence to convince those that it might be worth giving a try. I think some of them are going to be surprised that they enjoy it and “oh, I can sing.” So I think that to me is a future hoped for outcome.    And then again, seeing it spread out to other gardening groups, other yoga groups, all these other things that we know are happening within Aphasia Access members and beyond to see, okay, there's this methodology. This is what's used to study something like this, let's apply it also so that its efficacy data for these other approaches that we know and we see can be helpful, but we don't have enough proof to have someone prescribe it and to get those stakeholders involved.   Ellen Bernstein-Ellis  45:33 Yes. And we talked about the importance of some of the work that's being done with mental health and aphasia and how some of the information that you're pursuing could really tie in and help us support and get more work in that area as well. So really exciting.    I can't believe we have to wrap up already. I agree with you all, that we could just keep talking on this one. But let's just end on this note, I would like to find out from both of you. If you had to pick just one thing that we need to achieve urgently as a community of providers and professionals, what would that one thing be? What would you like to speak to? At the end of this discussion we've had today and Arla, you get to go first again.   Arla Good  46:15 The one thing we need to achieve urgently is to find a way to address people's needs in a more holistic way. And to see the human as a whole, that it's not just this piece and this piece and this piece, but all of it together? And how can we do that? How can we communicate better as practitioners, as researchers, so that we can address these needs more holistically?   Ellen Bernstein-Ellis  46:36 Thank you. Thank you. And Jessica, what would you like to say?   Jessica Richardson  46:41 I could just say ditto. I totally agree. So the end.    But I think the other part is from a clinician standpoint. What I hear most from colleagues that are out there in the wild, and former students, is that they want the “How to” info which is perfect, because, SingWell has a knowledge mobilization aim, and the exact aim of that is to develop and share best practice guides, which you know, are already mentioned, choir sustainability guides, how to fund it, how to keep it going. Really important. And they're going to update these regularly. It's going to be available in lots of languages. So that's something I'm especially excited for, for our community, because I know so many people who want to start a choir, but it feels too big and intimidating, and maybe they don't feel like they have the musical chops. But this will really help them get over that hump to get started and will address that need. And that desire, that's already there, in a big way.        Ellen Bernstein-Ellis  47:42 Thank you. I'm so appreciative that you both made this happen today. It was complicated schedules. And I just really, really appreciate want to thank you for being our guests for this podcast. It was so much fun. I'm excited to follow the SingWell project over the next seven years and see what continues to grow and develop.    So for more information on Aphasia Access, and to access our growing library of materials, please go to www.aphasiaaccess.org And if you have an idea for a future podcast series topic, just email us at info@aphasiaaccess.org And thanks again for your ongoing support of Aphasia Access. Arla, Jessica, thank you so much. Thank you.    References and Resources  UNM Neuro Choir: https://www.youtube.com/watch?v=zQuamJgTVj8&list=PLy586K9YzXUzyMXOOQPNz3RkfRZRqtR-L&index=5 https://www.youtube.com/watch?v=guU_uRaFbHI&list=PLy586K9YzXUzyMXOOQPNz3RkfRZRqtR-L&index=6 https://www.youtube.com/watch?v=Q4_0Xd7HNoM&list=PLy586K9YzXUzyMXOOQPNz3RkfRZRqtR-L&index=7   www.singwell.org Good, A., Kreutz, G., Choma, B., Fiocco, A., Russo, F., & World Health Organization. (2020). The SingWell project protocol: the road to understanding the benefits of group singing in older adults. Public Health Panorama, 6(1), 141-146. Good, A., & Russo, F. A. (2022). Changes in mood, oxytocin, and cortisol following group and individual singing: A pilot study. Psychology of Music, 50(4), 1340-1347.    

Interviewer info  Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic communication impairments. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer.    Guest bios  Melinda Corwin is a university distinguished professor and clinical supervisor at the Texas Tech University Health Sciences Center (TTUHSC) Department of Speech, Language, and Hearing Sciences, where she has worked since 1994. Prior to her university position, she worked as a hospital speech-language pathologist. She directs the Stroke & Aphasia Recovery (STAR) Program, a community outreach program in Lubbock, Texas, for persons with aphasia and their families.  Brooke Hallowell is professor and dean of health sciences at Springfield College. Brooke is a specialist in neurogenic communication disorders, and has been working clinically, teaching future clinicians, and engaging in research on aphasia for 25 years. She is known for transnational research collaboration, academic and clinical program development, and global health programming in underserved regions of the world. A pioneer in using eyetracking and pupillometry to study cognition and language in adults, she holds patents on associated technology. Professor Hallowell is the author of Aphasia and Other Acquired Neurogenic Language Disorders: A Guide for Clinical Excellence. Listener Take-aways In today's episode you will: Identify key differences between clinician-centered care and person-centered care. Understand gaps in current training regarding the Life Participation Approach. Learn about the Aphasia Access knowledge course.   Edited show notes   Lyssa Rome Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California, and I see clients with aphasia and other neurogenic communication impairments in my LPAA focused private practice. Aphasia Access strives to provide members with information, inspiration and ideas that support their aphasia care through a variety of educational materials and resources.   I'm pleased to be joining the podcast as today's host for an episode that will feature Melinda Corwin and Brooke Halliwell. We'll be discussing Aphasia Access's new online project, Person-Centered Care: The Life Participation Approach to Aphasia Knowledge Course, which debuts this month, I had the pleasure of playing a small role in this project as the narrator for the course.    Melinda Corwin is a University Distinguished Professor and clinical supervisor at the Texas Tech University Health Sciences Center Department of Speech, Language and Hearing Sciences, where she has worked since 1994. Prior to her university position, she worked as a hospital speech language pathologist. She directs the Stroke and Aphasia Recovery, or STAR, program, a community outreach program in Lubbock, Texas, for persons with aphasia and their families.   Brooke Hallowell is a professor and dean of health sciences at Springfield College. Brooke is a specialist in neurogenic communication disorders and has been working clinically, teaching future clinicians, and engaging in research on aphasia for 25 years. She is known for transnational research collaboration, academic and clinical program development, and global health programming in underserved regions of the world. A pioneer in using eye tracking and pupillometry to study cognition and language and adults, she holds patents on associated Technology. Professor Halliwell is the author of Aphasia and Other Acquired Neurogenic Language Disorders: A Guide for Clinical Excellence, Second Edition.    Thank you for joining me. I wanted to start with an “aha moment,” anything that stands out for you in terms of the Life Participation Approach. Who would like to start?   Melinda Corwin So, at our university, I got to meet a man who was in his 60s, he had survived a stroke two years prior, he was single and living in a long term care facility. He didn't have any family locally. He came to our university community outreach program for people with aphasia. And after about six months of being with us, he confided to his student clinician one day that he wondered if he could work out a payment plan to pay for throat surgery to fix his problems with speech and communication. And we realized that he did not understand the nature of aphasia. He actually thought there was a surgery available to fix or cure it, and that because he was low income, he didn't have the money to afford it.    That was my aha moment, where I realized that we had failed him, our system had failed him. This man deserved to have access to his health information regarding his diagnosis, his condition, his prognosis, and he didn't get that as part of his ability to participate in his life and in his health care plan. And I knew we could do better. And so I found colleagues and friends through Aphasia Access, and I'm really hoping and working towards a systemic change for that reason.    Lyssa Rome Thank you. Brooke, what about you?   Brooke Hallowell Well, I continue to have aha moments. For for me, one that stands out relates to my role as an educator and a person who teaches courses in aphasia and author to support learning and future clinicians who will be working with people who have aphasia. It was hard for many of us who were raised with a focus on medical and impairment-based, deficit-focused models of aphasia, to integrate our appreciation for foci on life participation with how we were taught, and may have previously taught and mentored our students. It's as if, for many of us, the recognition of how essential it is for us to embrace life participation was there long before we had a good grasp on how to integrate life participation holistically into our educational content. We wanted to make sure our students knew about medical, neuroscientific, neuropsychological, psycholinguistic, etc., aspects of aphasia, and we wanted to make sure they knew about the theoretical underpinnings of aphasia-related content. So if you think about what we can cover in a course, in our limited time with future clinicians, we felt and still do just never have sufficient time to delve into some of the really critical life participation content.    So for me it kind of aha moment. Although I gotta say it wasn't. So sudden as a flash at a single moment in time, maybe an aha phase. It relates to the importance of helping current and future clinicians embrace that we all need to be able to hold several conceptual frameworks about aphasia in our minds at the same time, and that by understanding and appreciating multiple perspectives, we didn't have to necessarily choose one over the other. We didn't have to argue about which models were better than others, or whether working on impairment level deficits was somehow not essential to life participation. Once that realization was clear within me, I found that it was easier to integrate life participation and the ICF framework through our all of our discussions and teaching about aphasia and other disorders as well.    Many of us invested in life participation approaches have supported one another in that sort of integration of multiple frameworks in our thinking, and in our work. Aphasia Access has been a powerful force in that regard. The mutual support to hold life participation paramount, no matter what are other theoretical perspectives, and medical or non-medical orientations.   Lyssa Rome Thank you. I think that leads really nicely, actually, into this topic of the knowledge course that that Aphasia Access has developed and that's debuting this month. So can you tell us a little bit more about the project and how it began?   Melinda Corwin The project began with the plight of both people with aphasia and speech language pathologist. Of course, SLPs know that people with aphasia want to participate in life, which means their current life as a patient, or in their life when they go back home and their life years into the future. The plight for speech language pathologists is that they face enormous time limitations, insurance reimbursement constraints, they have increased workload across all the different healthcare systems and settings. And so providing true person-centered care, health equity, and personalized goals for each person that we serve can feel almost impossible.    This challenge was so pervasive that it appeared in a comprehensive report written by Nina Simmons-Mackie in 2018, called Aphasia in North America, and it's available from Aphasia Access. In her report, she listed the gap areas and so we really wanted to focus on gap area number five, which is related to insufficient attention to life participation across the continuum of care. And also gap area number six, which is related to insufficient training and protocols or guidelines to aid speech language pathologists and other health care professionals in the implementation of this participation-oriented intervention across the continuum of care.   So the year that her report came out a team of aphasia clinicians, researchers, and program providers mobilized to invent a product to concretely try to address these gap areas. We wanted to offer busy clinicians and healthcare professionals training that they wouldn't have to travel to, and something that was more than a webinar. We did a lot of research to produce the learning experience, and we tried to provide the most contemporary, interactive learning methods for adults. Our beta testers have said that they have found the course to be different and highly valuable.   Lyssa Rome So I think obviously, there's this big need. And I'm wondering, Brooke, maybe if you could speak a little bit more to how this person-centered care approach can support the goals of increasing life participation, and maybe differentiate a little bit between clinician-centered care and person-centered care for people with aphasia?   Brooke Hallowell  Sure. In clinician-centered care, the clinician is really in charge of all aspects of intervention. The clinician is the boss. The clinician decides what will be assessed and how it will be assessed. The clinician interprets the assessment results. And from that, sets goals for the person with aphasia. And the clinician decides on the treatment methods that will be used to reach those goals. And that's very different from person-centered care, where the person and the clinician are collaborators from the start, they work together to determine priorities for what that person really wants to be able to do in life and how communication affects what a person wants to do.   In person-centered care, the person's priorities are really the primary focus of assessment and goal setting and every aspect of intervention. And the person and the clinician set goals collaboratively, often including other people that are important in that person's life. And together, they collaborate in selecting what goals will get prioritized, and what the context is for working on those goals that's most relevant to the person.    So the person's priorities are at the heart of our work in person-centered care. We clinicians collaborate with the person, and those people who are important to the person, at every stage of goal setting, assessment, treatment planning, etc.   Lyssa Rome So thinking about person-centered care, I'm wondering if you can describe a little bit more about the goals of this knowledge course and how they relate to person-centered care.   Brooke Hallowell Sure, the overarching goal is to provide learners with foundational, verifiable knowledge that's critical for providing person-centered care. Person-centered care is a universal and global need for people who have aphasia, and those who are important in their lives. The Life Participation Approach is fundamental to this wish that clinicians worldwide have for people with aphasia. That's increased participation in life regardless of race, ethnicity, gender, gender expression, national origin, geographic location, religious or other beliefs—regardless of any individual differences.   This course is the first in a series. The knowledge course consists of eight online, self-paced interactive modules, each of which contains three specific learning objectives. The knowledge course is a standardized way that clinicians—from novices to experienced clinicians—can be formally recognized as a Life Participation Approach professional. When a person successfully completes the course, they earn an eBadge, a certificate, and an optional 2.5 continuing education credits for those who are members of the American Speech Language Hearing Association.    Next year, Aphasia Access will release the second in the series: the practice course. That course will build on the fundamentals of the knowledge course, passing that course will lead to the award of a second badge focused on implementation strategies across care settings. Every course module is designed to provide practical suggestions, graphics, dynamic video clips, and interactive and reflective activities to help key concepts come alive.   Lyssa Rome Tell us a little bit more about the content team. Who worked on this badge project?   Melinda Corwin This is Melinda and it's been an honor to serve as the content team manager for the project. For the knowledge course we had eight members on our team. Our lead author is Nina Simmons-Mackie, who's a professor emeritus at Southeastern Louisiana University. Of course, Brooke Hallowell, who as you said, is professor and dean of health sciences at Springfield College. Brooke also secured a grant to help with funding portions of this project and we could not have done it without her.   And our other team members include Katarina Haley, who is a professor at the University of North Carolina at Chapel Hill, and she directs the UNC Center for Aphasia and Related Disorders. Mary Hildebrand is a recently retired associate professor and program director of the occupational therapy department at Massachusetts General Hospital or MGH Institute of Health Professions. Jacqueline Laures-Gore is an associate professor of communication sciences and disorders at Georgia State University. We have Marjorie Nicholas, who's the chair of the communication sciences and disorders department at MGH Institute of Health Professions in Boston. And last but not least, our project manager Kathryn Shelley. She is co-founder and current grants director of the Aphasia Center of West Texas, and she's also a former president of Aphasia Access, and this course would not be possible without Kathryn's guidance.   Lyssa Rome Tell us a little bit more about what the benefits are of having this eBadge or taking this course.   Brooke Hallowell Sure, this is Brooke. The badge is going to convey to others that the participant has a firm foundation of person-centered care, which is, as we know, at the heart of the life participation approach. So benefits include delivering equitable, person-centered care through collaborative goal setting and intervention, improving success for people with aphasia, and those who care about them and helping specific care settings meet communication access mandates.   When an eBadge is displayed in an email signature, or on social media, there'll be a clickable link. And that will help employers, or colleagues, or the people that we serve, even friends and family, link to a full description of what it means to have earned that eBadge.   Lyssa Rome Great. Many of the professionals who are involved in Aphasia Access are experts in the life participation approach. So why would they want to take this course to document their knowledge?   Melinda Corwin This is Melinda. Well, by devoting personal time, energy, and resources to earn an eBadge, it's an efficient way to let others know that we share a common goal to provide patient-centered care across the continuum of care. And regardless of what setting a particular professional is in, whether they're in an acute care hospital, inpatient rehabilitation, outpatient rehab, home health, or community-level aphasia program, or group, these eBadge holders will be able to identify each other.   I'm a university professor and director of an aphasia community outreach program. I've been trying to teach and use the Life Participation Approach for several years, and I've wanted to spread the word with other speech language pathologists. So by adding this symbol to my email signature, I hope that colleagues will click on the eBadge and see what I've been up to.    My decision to display the eBadge is my way to help make system change possible, I envision a day in which all healthcare providers will aspire to provide patient-centered care, essentially from the ambulance ride to the emergency center, all the way to the person's return to home and community.   Lyssa Rome The benefits of this seem really clear. But will this eBadge or certificate be required for a clinician to to employ a person-centered or life participation approach to aphasia? Brooke?   Brooke Hallowell Oh, no, definitely not. I have to chime in on that. We know that many clinicians are deeply engaged in this approach. And many have adhered to this approach for years and in ways that may not have been labeled expressly as life participation approach. Still, based on gaps that we know exists in our current healthcare and community settings, we hope that the eBadge will really help clinicians showcase their knowledge to employers and peers and the people they serve. Engaging in the course itself can provide support for students and clinicians who want to consider life participation constructs, perhaps more deeply or in new ways. And as Melinda was just intimating, it's also a means of confirming shared values about life participation amongst us.   Lyssa Rome So when people have completed this course, how is that displayed as an eBadge? Melinda, maybe you can take that one?   Melinda Corwin Yes. So it'll be in the person's email signature line, if they choose to place it there. And the eBadge is from a company called Credly, which enables anyone to click on the badge icon and be taken to a website that explains exactly what training the person completed to earn that eBadge.   Brooke Hallowell Yeah, and it's so easy to register for the course, just go to the Aphasia Access website. That's www.aphasiaaccess.org. From there, you'll see the link to the knowledge course on the homepage. And that will take you to our new Aphasia Access Academy, which is the new home for all of our educational experiences. There is a cost. The cost for Aphasia Access members is $129. And for non-members, it's $179.    And if you're not already an Aphasia Access member, your enrollment in the course includes a one year, first-time membership. So it's really a wonderful way to experience so many benefits of our Aphasia Access membership and network. We have our Brag and Steal events, the distinguished lecture series, shared free resources, there's a discount registration for the Leadership Summit, and there are also on-demand pre-recorded webinars. So all of that comes along with that membership.    Lyssa Rome Well, I'm really excited about this course. And I appreciate your sharing more details about it. And I'm wondering if there are any last thoughts that you'd like to share with our listeners?   Brooke Hallowell Yeah, this is Brooke, I would just I've been reflecting as we've had this conversation today about how amazing it was to work with this collaborative team in developing the course. You know, I think all of us who have been involved in this from the beginning felt like we were already expert in the life participation approach. There isn't that much more to learn. But in fact, there was a tremendous amount of dynamic discussion, argumentation, passionate discussion about the various aspects of the life participation and how to portray it, how to talk about it, and what terms to use and not use. So I feel like I grew tremendously from the process of the course development. And I think a lot of that, I certainly hope that a lot of that comes out to people who participate in the course. So even if you think you're already expert in it, I'd still recommend that you give it a try for all the reasons that we talked about, and including that there's always more for all of us to learn about this approach.   Lyssa Rome So true. Brooke Hallowell and Melinda Corwin, thank you for being our guests on this podcast. For more information on Aphasia Access and to access our growing library of materials, go to www.aphasiaaccess.org. For a more user-friendly experience, members can sign up for the Aphasia Access Academy, which is free and provides resources searchable by topic or author. If you have an idea for a future podcast series topic, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.    References and Resources  http://www.aphasiaaccessacademy.org/  www.AphasiaAccess.org/knowledgebadge/   

Welcome to this edition of Aphasia Access Conversations, a series of conversations about topics in aphasia that focus on the LPAA model. My name is Janet Patterson, and I am a Research Speech Language Pathologist at the VA Northern California Health Care System in Martinez, California. These Show Notes follow the conversation between Dr. Papathanasiou and myself, but are not an exact transcript.   Dr. Ilias Papathanasiou is a Professor of Speech and Language Therapy at the Department of Speech and Language Therapy, University of Patras, and a Research Associate at the Voice and Swallowing Clinic, the First ENT Clinic of the Medical School of the National Kapodistrian University of Athens Greece. He is a Fellow of the American Speech-Language-Hearing Association and has received numerous awards and recognition for his tireless efforts on behalf of aphasia awareness and rehabilitation research in the international community.  In today's episode you will hear about: considering LPAA values across social, cultural and international norms, increasing aphasia awareness through actions in the local community, mentoring speech-language pathologists who are learning about aphasia and LPAA in countries initiating aphasia rehabilitation services. Dr. Janet Patterson: As Ilias and I start this podcast, I want to give you a quick reminder that this year we are sharing episodes that highlight at least one of the gap areas in aphasia care identified in the Aphasia Access, State of Aphasia report, authored by Dr. Nina Simmons-Mackie. For more information on this report, check out Podversations episode # 62 with Dr. Liz Hoover, as she describes these 10 gap areas or go to the Aphasia Access website. This episode with Dr. Papathanasiou focuses on gap area number seven, insufficient or absent communication access for people with aphasia or other communication disorders, and gap area 10, failure to address family and caregiver needs including information, support, counseling, and communication training. I hope our conversation today sheds additional light on these gap areas.    With that introduction, I would like to extend a warm welcome to my friend and noted aphasiologist, Dr. Ilias Papathanasiou. Welcome Ilias and thank you for joining me today on Aphasia Access Podversations.   Dr. Ilias Papathanasiou: Thank you very much for this kind invitation. I'm thrilled to be with you and speak about aphasia from a rather international perspective. As you know, I have been trained in UK, I work in Greece, and have been active in many places around the world and working with developing countries, for people with aphasia.   Janet: Ilias, I'm just thrilled to have you here, and as a side note to our listeners, Ilias and I have already been talking for about an hour sharing wonderful stories about aphasia and international aphasia. Sadly, most of that won't be caught on this particular tape, but I hope a good bit of it will, because Ilias, you are a fount of information, not only about aphasia, but also about aphasia and the international community. Let me start by saying that our listeners, Ilias, are likely very familiar with the LPAA model, which as we all know, places the person with aphasia at the center of decision-making, to support them in achieving their real-life goals and reduce the adverse consequence of aphasia. How do you think social and cultural norms play a role in understanding the LPAA model?   Ilias: This is a very interesting question, which we'll have to answer. But first of all, I think we have to start with what is aphasia and how the implications of aphasia start in the community. I will say, aphasia is a language impairment, first of all, which is related from the focal lesion, which has, of course, great effects on the person with aphasia, on the quality of life, on the social network and the person, on the making friendships, on how the person functions, and the everyday environment. Now, how the person functions in the everyday environment, is related to many, many social norms. I have been working for 15 years in UK and then back to Greece. And I think that's changed my perspective. What is the social role? What the social model can offer in aphasia, because we have two different societies so they believe there are too many different societies around the world which can see aphasia as a different perspective. Taking the example from Greece, I think Greece has got a much-closed family network and supportive network comparing with other developing countries. I mean, the traditional Greece accepted that people will live with or very near their children, will have family nearby, they have their friends nearby, and they will try to - the family - to take the leadership support of the person with aphasia. This is something which might be a bit different with the USA. So in this way, the decision relies on the person and their LPAA approach of getting together and having a chat, which is not what it is for me. It is totally different, it is different in that there you have to help the participation for these people. From this perspective, I will say that life participation approach, if you take a very more wide perspective, is how we take behavior. How we take behaviors doing therapy, not only to the linguistic background because we have to start from there, you know, it's a language impairment, but also to changing behaviors of the people surrounding, to the society, and even to the government policy some time. And there's not only you know, intervening to the benefit to the person and facilitated the person which of course is correct, it's not only that. I will bring the examples. How many hospitals around the world are aphasia friendly? How many documents used by the government are aphasia friendly? And they think this access to solve this information is restricted to the people with aphasia. That is not only in USA, but I think is around the world and even you know, in different parts of the world. Some other movements of people with special skills, for example, people with visual impairment, or hearing impairment, they have been around much longer than the people with aphasia, and perhaps their network, their lobby has achieved much more changes on their policy or in the government. But for people with aphasia, this has not been the case as yet. I think this is something which can work because life participation has to be multi-directional. It is not only to change. The direction of a life participation approach, as I have to say, is a market direction, is multimodal. It has to start even from changing the attitude of the person with aphasia, changing the attitudes of the people surrounding aphasia. Telling you that you are of the society in which they move. Perhaps look at the activities which there are. But most important, changing also the government issues, the policy issues, so to make the environment to enable the person with aphasia to participate. It is very different that in Greece, perhaps, we do not have this approach as you expect in USA. Because as I said in the beginning, there is very close family network, which take that role quite importantly, and there are cases that the family will take out the person, because their close family relations, the person will continue to participate in everyday activities with the family, and perhaps helping them to be as active in the social roles as they were before.   Janet: That makes a lot of sense. You really need to think about the LPAA model with respect to the culture where a person with aphasia lives and where their families are. Let me ask you also, Ilias, in Greece, where you live and practice, how do persons with aphasia participate in speech-language treatment, and you've talked about there isn't really a practice model like LPAA, but it's more of folding the person with aphasia into the family. How do people with aphasia participate in speech-language pathology, and then move into the family?   Ilias: Speech-language pathology in Greece is very new. So, some of the public hospitals do not have a speech pathologist, yet. The first graduates from the Greek programs is about 20 years ago. It's really new and most of them have been focused on pediatrics. The rehabilitation of adults and especially with aphasia is very new in Greece. Also now we have started having some rehabilitation centers. People with aphasia are facing rehabilitation on the acute states in the hospitals, people will stay there for three or four days, having the medical checkup, and then move to a rehab unit. In the rehab unit, which will stay for two or three months, they will have more impairment-based one to one therapy on a daily basis. And then, but surrounding them at the rehabilitation center, is always the family member, which will be visit them daily, taking them to activities and whatever. And then in most of the cases the person will move back to the family. They might continue rehabilitation with an outpatient, private speech therapist, which the family supports at home. This setup will help them integrate within the family network. And usually, you know, people are still looking after, say, if they are married and live as a couple, the woman or the man will look after them, take them out to activities that simply would come around, and help, and take them to the different activities and everyday events, helping them to go out and socialize within the family network. We are still in the network that people are visiting each other, you know, the social events and the family events very often, which is quite important. The person still carries on the routine, and there is the physical disability that might restrict the person to go out, but the family will find a way to communicate and have some activities of what they want to do. And usually, I will say, that the integration after is more related to the family. Now, that can happen, I will say about 70%, 75% to 80% of the cases. Still there will be cases with no family and no support or whatever. In that case, there will be some nursing homes. They're very limited, the nursing homes. Someone would go to a nursing home if they are totally dependent on physical abilities, like they cannot walk, not take food and tube fed or whatever. The rest will be with supports in the family.    On the other hand, what has happened in the last years is that people pay privately, a carer to be with the person with aphasia, or an elderly person. Most likely the carer be an immigrant from another country and perhaps they do not speak the language. From that perspective, the family will go in and help this person. And that's how it helps. You have to look at what is a norm for an elderly person with aphasia. Not another person with aphasia, but what is known for an elderly patient in Greece. Say if someone retired, then what she likes to do usually in Greece, is to be close to the family and see the grandchildren, to be close to do some activities. Some of them they might have a summer house with they go and spend some time with the grandchildren there. So again, for a person without aphasia the activities will be surrounded the family. This continues to exit. So, if someone with aphasia has the grandchildren coming to his house and play, and he wants them, that will be a quality of life for him, to see them and play and communicate. This is very nice because this will give him a motive to do things for himself. But also, the kids will be aware of what is aphasia, and what happened, and that will increase in some ways awareness.   Janet: It sounds like there is a lot of responsibility the family members assume for integrating the person with aphasia into the daily activities and their daily roles, and the fun and the work of family life.   Ilias: This is happening in all aspects. The elderly people stay with the family, stay connected. You know, I will not think that Greek person will leave the parents away from them. It's like you know, they will help and will support them. They might not live together but there will be close family support   Janet: Ilias, you work in a university clinic. At that clinic how do you implement the ideas of client- centered practice or LPAA in your work and your work with students,   Ilias: I don't work directly with aphasia at the university clinic, I work on the voice and swallowing clinic. I teach about aphasia with my students. What I say to them is give them is examples from every day. Usually in my classes there is discussion of the psycholinguistic, cognitive neuro model. And also, there are different lectures of putting them into their functional or community participation approach with aphasia. There are no projects in Greece, like clubs with people with aphasia and community settings where they can go. And from one perspective, I'm not sure if we need that. First is from the family, from the personal view. You don't take the people who have aphasia and put them in another place with people with aphasia, to interact only among them. The point is to integrate them in the community activities and not to you know, go from the house to another room because they will meet another 10 people, unless there are community activities for them to do.  The community activities surrounding it are doing the things which you can do before. What I tried to do with my students is first to teach them to find out what an elderly person needs; how the elderly person communicates. It is very common in Greece to have the coffee shops where people go and have a coffee and play cards. I said to them, go and play cards with your grandfather to see how he communicates, to see what he feels, to see what he needs. If you learn to play cards with your grandfather and your grandparents, you will learn to communicate with a person with an aphasia, because really you have to approach the level and the needs of that person. That is my philosophy with my students - go interact with the people on different events and not be so centered to yourself, and what you think. Go and find out what they want. So we tried to create activities within the class, which we will look on these different perspectives. There is no settings like nursing homes, which they have got people with aphasia in Greece, because people are living in their own homes, about 80% - 90%. The family is there. What we mean by the life participation approach is going back to the family life, going back to the community, because that is the most important to the person's needs and he wants to be close with a family.   Janet: As you're doing that, and teaching your students and role modeling, I imagine you might find some obstacles to actually implementing client-centered care. What obstacles do speech pathologists in Greece face? How do you and your colleagues work to mitigate those obstacles and implement the care principles similar to those of LPAA, when you're working with the patients with aphasia,   Janet: First, you know, there are some physical obstacles. For example, if you live in a big city like Athens, in a block of flats, not all of them are accessible. For people to get out of the house is not always very easy. That is an issue, in general and is not like the United States, where you have homes on one level; people can park outside their houses and get in and out. Here it is totally different. It is like having access in place in New York City with steps to go up in one of these big townhouses. It is not easy for a person with aphasia. Think about it, if you live in a townhouse in New York with ten steps to climb and go in, a person with aphasia cannot do that easily; with a stroke, not with aphasia. This is a similar situation in most places in Greece. Even the new buildings have to have access for people with disabilities, but still, we have flats from the 1960s and 1970s, who do not have access. There are physical obstacles for people to come out and get involved.    Then the other big thing which you have to change is the awareness of aphasia. For people to understand that this person does not have intelligence problem, and this is just a communication problem. And that the people, you know, have the executive function, to function and to communicate. People who do not have that in mind, you have to change this way of thinking. A few years back in Greece, people were saying, ”Oh, he had a stroke, now he lost his mind.” I believe this is nothing new, what's happened in Greece, this happened in other parts of the world, the thinking that aphasia affected the intelligence of the person. We tried to change that, to say that aphasia is something which you have. You lost the ability to use your language and to communicate, but still you are the same person, nothing has changed. You still have got your thoughts, your feelings, your loved ones, this has not changed. And as I told you, there is also some natural recovery in different ways. The example, which I gave you before, when we had the chat, when I saw my person from the village where I was born in Greece, when I was living in UK, there was no service for aphasia in Greece. He never had therapy and he was someone with Broca's Aphasia and severe apraxia. His wife was taking him every day to the coffee shop, which he used to do, to see the same people and watching the people play cards, and he has found the natural way of communicating. That I think, is very important because he kept the activities. He kept the roles and that is the social model of the life of the patient. It does not mean life participation is to go to a club to meet other people with aphasia. Life participation means to return back to what you want, and what is your everyday activities, your family, and what it is important to you to do. That's what I tried to do with my students, tried to put them into this modality of thinking that you have to take into account what the person of aphasia is, and what the environment they live. It says a person should return to these roles are soon as they can.   Janet: Those are wise words very, very wise words Ilias, I think, especially the idea about going into the coffee shop. That makes perfect sense is a way of beginning to communicate and establish a pattern between the two of you for communication.   Ilias: Yeah, but this person did develop a pattern of communication with no intervention. You will say then, what would a speech-language pathologist do in this situation. And I will say, the speech-language pathologist will go there from the beginning, might work on the linguistic impairment at the same time, show his wife and facilitate all these changes in the life they knew, and perhaps, if she found a way, two months or three months down the line, to take him to the coffee shop. She should start doing that earlier, taking him out to everyday activities which he used to do before. Sometimes, you know, we have to think we are overreacting. Perhaps we have things in our mind, the therapist, which we say, “oh, you should do that, you should do that, you should do that.” The person really is not aware of what we're suggesting, you know, what I mean? We're very motivated for people to do more things and more things and get involved. But actually, the person, that is not what you want. Some simple things in life can make these changes.   Janet: Exactly.    Ilias: Give them this space to make the choices of what is meaningful to them. The thing, you have to take that into account, and that's what I say from the beginning. The behavior changes, not only the linguistic skills and on the family, but also to us. How we're able to understand as clinicians where to stop participating in the social interaction with them. Some people are lazy, some have got a different network. It's not all you know, what we want to push them to do?   Janet: You're exactly right, because you may have wonderful ideas as a speech-language pathologist, but they don't match with what the person with aphasia would like to do. You must respect their ideas and their wishes.   Ilias: It is not only respect them, because we do, I want to believe that we respect the wishes. We have to teach ourselves to take that into account when we give these wonderful ideas. It is a skill not to push the people, you know, not to push people too far. You have to give them the space, and I think that is quite important, too.   Janet: Let me take this conversation in a slightly different direction. What you've been talking about a lot is really awareness and support and understanding the culture of where a person and how a person with aphasia lives, and how their family lives. But let me take you in a slightly different direction by asking about the papers that you have published on several topics helping people understand aphasia. I'm thinking mostly about your papers on public awareness of aphasia and assessing quality of life for persons with aphasia. Will you tell us a little bit about this line of research that you've been doing, and how you see it informing clinical practice for speech-language pathologists who believe in the LPAA model and patient-centered care   Ilias: Now, you are speaking with someone who has got a very wide background in research. I have to say that my first research and my Ph.D. was about neuroplasticity and connectivity. I did that back in London at the Institute of Neurology, with TMS and connectivity in the middle 1990s, before all this idea about plasticity and connectivity came out.  It was very lovely to work with them. At that point, this was not very popular. I don't know why, but now it is. Perhaps people are not aware about all this work I have done with connectivity in neuroplasticity, back in the 1990s, even though it is published. But it's written in different way.    But coming back to Greece, I have to say, you have to start from a different perspective. Why is that? Because I come from a country who has totally different needs, comparing with UK who have more organized research. I will take that as a guidance or an advice to people who are going back to their countries of developing. There are countries who do not have, you know, the research programs you have in USA, and that are still developing countries. When I came back to Greece, I had to start from somewhere. The things which I needed were tests to evaluate aphasia, I need to see what the public knows about aphasia, and even what are some networks about aphasia, I need to start from epidemiological data. Because unless you work on an epidemiological data, you will not be able to go to the government and say the policies, how many people with aphasia exist and what changed. At the same time, Katerina Hilari in UK was doing the work on quality of life. We did a project with her here in Greece on the validation of the quality-of-life approach, which Katerina has developed, and has been used in Greece as well. With Katerina, we developed the first efficacy study in the Greek language, because we have to prove that the linguistic difference makes a difference. We took the semantic feature analysis in a different perspective, which is more approachable to the Greek. It will do the semantic analysis work, which has been published.    So really, coming back from here, you have to start from the basic and it is important for the local community in the country because you got to start. That's why I have the work which changed my direction some ways. We might speak about different approaches to aphasia in developing countries, when you go to the small countries, this is totally different. At the same time, because people have been starting my position in other countries, I have been invited to help them out in a different perspective. I have been working with Slovenia, for example, helping them to develop the test, and they are doing education about aphasia. Now I have contact with people from Middle East and they want the similar. Through my work with the International Association of Language and Communication Sciences and Disorders, IALP, as part of the Education Committee, we have a mentorship program for clinicians working with aphasia, something which perhaps you don't know. IALP and Tavistock trust, have put together a program and aphasia committee and we are mentors of clinicians in the developing countries. Right now, the IALP program has about twenty clinicians being mentored around the world. I have someone in Vietnam, which is very interesting. And the same time, from my role as the Education Committee, I have been involved in many of these places, which they asked you know, how to develop materials, how to do all this work to change the life of communication disorders. I think aphasia is part of that, because I have all that experience. I think you have to start off at that point with the research, you know, develop the tests, the materials to assess, and then go to the different aspects which we need of recovery. Taking in the national perspective, regarding tests, I will say, you do not have to translate the test, you don't translate the test, you adopt the test. And sometimes it's not possible to do that. Even some of the notes of the quality of life which you have, or the social approach, which you have in the case of the life participation approach with what we have talked before, might not be appropriate in a different country. But you have to think the principles behind that.   Janet: You talk about awareness, and it makes me think that it really is foundational to so much of what we think about with LPAA. You're talking about awareness of aphasia in government areas, in policy areas, in writing documents, in how families engage with people with aphasia, how the shopkeepers around the area engage with people with aphasia. Awareness is important and those of us who are enmeshed in aphasia, we just may take it for granted that everybody knows what aphasia is, or everybody knows how to talk with the person with aphasia, and that's just not so. You're telling me, and I believe you're right, that building awareness is so important to the foundation of building a successful aphasia culture, whether it's the rehabilitation culture, or the family culture, or the government culture,   Ilias: I want to say aphasia-friendly society, instead of culture.   Janet: That's a great way to think about it – aphasia-friendly society, larger than just the speech language-pathology community.   Ilias: Larger than that. With the Bruce Willis and all the issues these days about aphasia, it's a great opportunity to go out and speak what is aphasia. People now might know the word aphasia, but what actually is the effect on life and how we'll live with that. I don't think that people are aware of that, unless it is something they have experienced from their own household. I think we have to get involved, taking the opportunities not only to go to the TV channels or going to the media and speaking about it, using this opportunity to get involved to the changes in the society. I think that is what will be the opportunity. The media help up to one level, but speaking to the media, they will know what is aphasia but that will not change that of the society 100%. People have to be in phase with a person with aphasia, and they have to say, to interact, with a person with aphasia to understand what it is. In the smaller communities, that might be easier, because each knows each other, and that will be much easier. That is why Greece, who is a smaller community, this small village, in a small town is more acceptable, comparing where the neighborhood network and the neighborhood community is still very close, comparing with big cities, which we don't know who lives next to you. That helps people understand what's going on and helping the person with aphasia. We have to start from the local people instead of going to the media. They're here, and you go out and take the people with aphasia to breakfast. I say, going to the coffee shop, that will be another 15 people there, these people will know what happend and speak with them. These 15 people will go to a different level. This is how you spread the word of aphasia. It is not always that the media will do the best thing. That's what I think.   Janet: I think you're right; it takes many perspectives. And people working from many points of view to really build this foundation and the media, especially with the attention it's given in the last couple of weeks about Bruce Willis. The media certainly plays a point, but you're right, not the most important point or not the only point. We are the advocates, and we are the ones who need to lay the foundation for awareness,   Ilias: I think we have to go a step further. Like, yes, the media brought this case up, go to the governor, go to the policies, insist that there is a need there. It is the media in different ways. Go and speak with the politicians, the lobby. I don't think this has happened.    Janet: It happens in some places, but we can certainly do more. Which leads me actually to my next question. So in addition to being a leader in aphasia, in your country of Greece, Ilias, you also have a large international presence in the aphasia community. You've alluded to that, and that presence in the discussion today. But I want to take you a little bit further into that by asking, how do you see the LPAA model influencing aphasia services throughout the international community? I know you've already talked about it with respect to your Greek community, but what are you thinking about, or what are you speculating about with the larger international community?   Ilias: I think that we will be involved in the very international community, but we have to take into account their special social network, which every community has got, which is totally different. Perhaps the life participation approach will be different from one community to another globally, from one country to another. Each community has got different norms, so it has to be adopted to the different norms of the community. How that will happen, I think, is local people will take the history of it and try to disseminate, and they will adopt it locally. It has to be adopted locally, and how it will be applied with different societal structures, that also will be very interesting to see. As I say, working with these developing countries, I will be very interested to see how that will evolve, and how they will respect. Some of the countries think that aphasia therapy is only linguistic because they have different norms, or I don't know if there are some countries which think about intelligence. There must be. So it's a lot of education which has to happen in all these countries to do all this information.    Janet: That's a good perspective and again, brings us back to the work we need to do in terms of aphasia awareness, talking with our colleagues internationally, and connecting with people with aphasia and their families.   Ilias: It's very important because I think the world that will change as well, because the world is getting smaller. I think communication between different countries at different perspectives, now, it's much easier. Look at the different ways which this podcast works. This can have access to different people around the world, they can speak, have communication, have Zoom meeting. It's much easier to communicate and have access to different information. I think that will help to change. But on the other hand, you don't know how ready a culture is to accept this approach, because some technology is going too fast for some countries and cannot be persuaded to go faster in some modalities. I think it's much easier than it used to be 20 years ago to have access to all this information directly. I think this is a positive sign for more countries to approach to life participation approach.   Janet: Certainly, we've had some podcasts on this topic, and people are thinking about how do you connect, to do a group therapy for people with aphasia, using technology or Zoom or some other platform? Certainly, that is exciting and if it helps persons with aphasia, that's a great thing.   Ilias: Can we have a podcast with people with aphasia speaking from different countries?   Janet: I think that would be a terrific idea. We've had one podcast with some people with aphasia speaking, but they have been in the same location. We have had not podcasts, but I've been part of activities where people in different parts of the United States have been talking together on Zoom. I think that's an excellent idea, people with aphasia from different parts of the world gathering together to talk about their aphasia, I'm going to propose that topic to our team,   Ilias: I'm happy to facilitate that.   Janet: Excellent, I'll sign you up Ilias. As we bring this interview to a close, Ilias, I wonder if you have some pearls of wisdom or lessons learned about LPAA and aphasia services in Greece and around the world that you will share with our listeners.   Ilias: I will say first of all, listen to the person. Just note what the person wants. That is the most important thing. A person with aphasia, as Audrey Holland said, is able to communicate even if he has got the linguistic impairment. So as clinicians, as family, try to find the strong points of this person, and make the most of it, to make him an active member of the society. According to what he wants, she wants, do not impose things on the person, give them the opportunity. I think that is applied everywhere. With the different societal rules, people need different things. Just listen to this person, what he wants, and just use the stroke skills which they have, and facilitate to be an active member of the society. Don't ignore the linguistic impairment, change the behavior allowed at all different levels that we have discussed so far. That's what I want to give out of this perspective.   Janet: I think those very important pearls of wisdom, especially the idea of listening to the patient. It's not huge, it doesn't take a lot of effort, but it's so very, very important because it can form the foundation of the relationship that we have and the success that the person with aphasia can feel. Thank you for those, I will take them to heart and take them into our minds as well. I do appreciate Ilias, your insights and your dedication to serving people with communication disorders. Thank you very much for talking to me today.    This is Janet Patterson, and I am speaking from the VA in Northern California. Along with Aphasia Access, I would like to thank my guest, Dr. Ilias Papathanasiou, for sharing his knowledge about aphasia and his experiences in the international aphasia community. I am grateful to you, Ilias, for reflecting on LPAA and international aphasia services, and sharing your thoughts with us today.   You can find references and links in the Show Notes from today's podcast interview with Ilias Papathanasiou at Aphasia Access under the Resource tab on the homepage. On behalf of Aphasia Access, we thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access, and to access our growing library of materials, please go to www.aphasiaaccess.org. If you have an idea for a future podcast topic, please email us at info@aphasiaaccess.org Thank you again for your ongoing support of Aphasia Access.                 References   Papathanasiou, I. (Ed.). (2000). Acquired Neurogenic Communication Disorders: A Clinical Perspective. London: Whurr Publishers.  Papathanasiou, I. & De Bleser, R. (Eds.).  2010 (2nd ed.). The Sciences of Aphasia: From Therapy to Theory. London: Emerald Group Publishing. Papathanasiou, I., Coppens, P. & Potagas, C. (Eds.).  2022 (3rd ed.). Aphasia and Related Neurogenic Communication Disorders, Burlington MA: Jones & Bartlett Publishers.   International Association of Communication Sciences and Disorders.  https://ialpasoc.info  Tavistock Trust for Aphasia. https://aphasiatavistocktrust.org/  Ilias Papathaniou@facebook.com

Interviewer I'm Ellen Bernstein-Ellis, Program Specialist and Clinical Supervisor for the Aphasia Treatment Program at Cal State East Bay and a member of the Aphasia Access Podcast Working Group. AA's strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.  Today, I have the honor of speaking with Dr. Jamie Lee who was selected as a 2022 Tavistock Distinguished Scholar. We'll discuss her research interests and do a deeper dive into her work involving the study of texting behaviors of individuals with aphasia and her efforts to develop an outcome measure that looks at success at the transactional level of message exchange.  As we frame our podcast episodes in terms of the Gap Areas identified in the 2017 Aphasia Access State of Aphasia  Report by Nina Simmons-Mackie, today's episode best addresses Gap areas:  Insufficient attention to life participation across the continuum of care;  Insufficient training and protocols or guidelines to aid implementation of participation-oriented intervention across the continuum of care;  Insufficient or absent communication access for people with aphasia or other communication barriers  For more information about the Gap areas, you can listen to episode #62 with Dr. Liz Hoover or go to the Aphasia Access website.   Guest bio Jaime Lee is an Associate Professor in the department of Communication Sciences and Disorders at James Madison University. Jaime's clinical experience goes back nearly 20 years when she worked as an inpatient rehab SLP at the Rehabilitation Institute of Chicago (now Shirley Ryan Ability Lab). She later worked for several years as a Research SLP in Leora Cherney's Center for Aphasia Research and Treatment. Jaime earned her PhD at the University of Oregon, where she studied with McKay Sohlberg. Her research interests have included evaluating computer-delivered treatments to improve language skills in aphasia, including script training and ORLA, examining facilitation of aphasia groups, and most recently, exploring text messaging to improve participation, social connection and quality of life in IWA.   Listener Take-aways In today's episode you will: Learn about why texting might be a beneficial communication mode for IwA Explore the reasons it's important to consider the communication partner in the texting dyad Find out more about measures examining texting behaviors, like the Texting Transactional Success (TTS) tool. Consider how Conversational Analysis may be helpful in understanding texting interactions Edited show notes Ellen Bernstein-Ellis Jamie, welcome to the podcast today. I'm so excited that we finally get to talk to you. And I want to offer a shout out because you mentioned two mentors and colleagues who I just value so much, McKay Solberg and Leora Cherney, and I'm so excited that you've also had them as mentors.   Jaime Lee  02:44 Thanks, Ellen. It's really great to talk with you today. And speaking of shout outs, I feel like I have to give you a shout out because I was so excited to meet you earlier this summer at IARC. We met at a breakfast. And it was exciting because I got to tell you that I assigned to my students your efficacy of aphasia group paper, so it was really fun to finally meet you in person.   Ellen Bernstein-Ellis  03:11 Thank you, that is the paper that Roberta Elman was first author on. I was really proud to be part of that.   I was excited to get to come over and congratulate you at the breakfast on your Tavistock award. I think it's very, very deserving. And I'm excited today that we can explore your work and get to know each other better. And I'm just going to start with this question about the Tavistock. Can you share with our listeners what you think the benefits of the Tavistock Distinguished Scholar Award will be to your work? Jaime Lee  03:43 Sure, I think first off being selected as a Tavistock Distinguished Scholar has been really validating of my work in terms of research and scholarship. It's made me feel like I'm on the right track. And at least maybe I'm asking the right kinds of questions. And it's also really meaningful to receive an award that recognizes my teaching and impact on students. And I was thinking about this and a conversation that I had with my PhD mentor McKay Solberg. And it was early into my PhD when we were talking about the impact of teaching and how important it was, where she had said that when we work as a clinician, we're working directly with clients and patients were hopefully able to have a really positive meaningful impact. But when we teach, and we train the next generation of clinicians, you know, we have this even greater impact on all of the people that our students will eventually work with throughout their career. And so that's just huge.  Ellen Bernstein-Ellis  04:51 It really is huge. And I have to say I went to grad school with McKay and that sounds like something she would say, absolutely, her value of teaching.  I just want to do a quick shout out to Aphasia Access, because I think they also recognize and value the importance of teaching. They have shown that commitment by their LPAA curricular modules that they developed and make accessible to Aphasia Access members, so people can bring content right into their coursework, which is helpful because it takes so much time to prepare these materials. So, if you haven't heard of these curricular modules yet, please go to the website and check them out.  So yes, I'm so glad that you feel your work is validated. It's really important to validate our young researchers.  I think there's an opportunity to expand who you meet during this year. Is that true? Jaime Lee  05:40 That is already true. This honor has already led to growing connections with other aphasia scholars and getting more involved with Aphasia Access. I'm excited to share that I'll be chairing next year's 2023 Aphasia Access Leadership Summit together with colleagues Esther Kim and Gretchen Szabo. We're really enthusiastic about putting together a meaningful and inspiring program. I am just really grateful for the opportunity to have a leadership role in the conference. Ellen Bernstein-Ellis  06:17 Wow, that's a fantastic team. And I, again, will encourage our listeners, if you've never been to a Aphasia Access  Leadership Summit, it is worth going to and everybody is welcomed. We've had several podcast guests who have said that it has been a game changer for them-- their first attendance at the Leadership Summit. So, we'll be hearing more about that.  Well, I want to start our interview today by laying some foundation for your work with texting and developing some outcome measures for treatment that captures transactional exchange in individuals with aphasia. And let me just ask what piqued your interest in this area? Jaime Lee  06:57 Yeah, thanks. Well, before I got interested specifically, in texting, I had this amazing opportunity to work as a research SLP with Leora Cherney and her Center for Aphasia Research and Treatment. And we all know Leora well for the contributions she's made to our field. At that time, she had developed ORLA, oral reading for language and aphasia, and a computerized version, and also a computerized version of aphasia scripts for script training. And these were treatments that not only improve language abilities in people with aphasia, but I really had this front row seat to seeing how her interventions really made a difference in the lives of people with aphasia, and help them reengage in the activities that they wanted to pursue-- reading for pleasure and being able to converse about topics that they want to do with their script training. So at the same time, I was gaining these really valuable research skills and understanding more about how to evaluate treatment. I was also able to start learning how to facilitate aphasia groups because Leora has this amazing aphasia community that she developed at what was then RIC. I'm just really grateful for the opportunity I had to have Leora as a mentor, and now as a collaborator. And her work really helped orient me to research questions that address the needs of people with aphasia, and to this importance of building aphasia community. Ellen Bernstein-Ellis  08:37 Wow, that sounds like a really amazing opportunity. And I think it's wonderful that you've got to have Leora as a mentor and to develop those interests. Then look at where you're taking it now. So that's really exciting to talk about with you today. Jaime Lee  08:54 As for the texting interest that really started after I earned my PhD and was back at the Rehab Institute, now Shirley Ryan Ability Lab, Leora was awarded a NIDILRR field initiated grant and I served as a co-investigator on this grant. It was a randomized, controlled trial, evaluating ORLA, combined with sentence level writing.  The two arms of the trial were looking at ORLA plus writing using a handwriting modality, versus ORLA combined with electronic writing or we kind of thought about this as texting. So we call that arm T-write. And ORLA was originally designed to improve reading comprehension, but we know from some of Leora's work that there were also these nice cross-modal language improvements, including improvements in written expression. This was a study where we really were comparing two different arms, two different writing modalities, with some secondary interest in seeing if the participants who were randomized to practice electronic writing, would those improvements potentially carry over into actual texting, and perhaps even changes in social connectedness? Ellen Bernstein-Ellis  10:15 Those are great questions to look at. Interest in exploring texting's role in communication has just been growing and growing since you initiated this very early study. Jamie, would you like to explain how you actually gathered data on participants texting behaviors? How did that work? Jaime Lee  10:32 Yes. So we were very fortunate that the participants in this trial, in the T-write study, consented to have us extract and take a look at their real texting data from their mobile phones prior to starting the treatment. So, for those who consented, and everyone, I think we had 60 participants in the trial, and every single participant was open to letting us look at their texts and record them.    We recorded a week's worth of text messages between the participant and their contacts at baseline, and then again at a follow up point after the treatment that they were assigned to. And that was so that maybe we could look for some potential changes related to participating in the treatment. So maybe we would see if they were texting more, or if they had more contacts, or maybe they might even be using some of the same sentences that were trained in the ORLA treatment. We haven't quite looked at that, the trial just finished so we haven't looked at those pre/ post data. But when my colleagues at Shirley Ryan and I started collecting these texting data, we realized there were some really interesting things to be learned from these texts.  And there have been a couple of studies, we know Pagie Beeson's work, she did a T-CART study on texting, right? And later with her colleague, Mira Fein. So we had some texting studies, but nothing that really reported on how people with aphasia were texting in their everyday lives.  Ellen Bernstein-Ellis  12:08 Well, Jamie, do you want to share what you learned about how individuals with aphasia texts are different from individuals without aphasia? Jaime Lee  12:15 We saw that first, people with aphasia do text, there were messages to be recorded. I think only a couple of participants in the trial didn't have any text messages. But we took a look at the first 20 people to enroll in the trial. We actually have a paper out-- my collaborator, Laura Kinsey is the first author. This is a descriptive paper where we describe the sample, 20 people, both fluent aphasia and nonfluent aphasia, a range of ages from mid 30s up to 72. And one striking finding, but maybe not too surprising for listeners, is that the participants with aphasia in our sample texted much less frequently than neurologically healthy adults, where we compared our findings to Pew Research data on texting. And our sample, if we took an average of our 20 participants and look at their texts sent and received over a week, over the seven days, they exchanged an average of about 40 texts over the week. Adults without aphasia, send and receive 41.5 texts a day. Ellen Bernstein-Ellis  13:36 Wow, that's quite a difference. Right?  Jaime Lee  13:39 Yes, even knowing that younger people tend to text more frequently than older adults. Even if we look at our youngest participants in that sample who were in their mid 30s, they were sending and receiving text much less frequently than the age matched Pew data. Ellen Bernstein-Ellis  13:56 Okay, now, I want to let our listeners know that we're going to have the citation for the Kinsey et al. article that you just mentioned in our show notes. How can we situate addressing texting as a clinical goal within the life participation approach to aphasia?  Jaime Lee  14:14 I love this question. And it was kind of surprising from the descriptive paper, that texting activity, so how many texts participants were sending and receiving, was not correlated with overall severity of aphasia or severity of writing impairment?  Ellen Bernstein-Ellis I'm surprised by that. Were you?    Jaime Lee Yes, we thought that there would be a relationship. But in other words, having severe aphasia was not associated with texting less. And we recognize, it's dangerous to draw too many conclusions from a such a small sample. But a major takeaway, at least an aha moment for us, was that we can't make assumptions about texting behaviors based on participants' language impairments, also based on their age, their gender. You know, in fact, our oldest participant in the sample, who was 72, was actually most active texter. He sent and received 170 texts over the week period. Ellen Bernstein-Ellis  15:22 Wow, that does blow assumptions out of the water there, Jamie. So that's a really good reminder that this to be individualized with that person at the center? Because you don't know.  Jaime Lee  15:32 You don't know. Yeah. And I think it comes down to getting to know our clients and our patients, finding out if texting is important to them. And if it's something they'd like to be doing more of, or doing more effectively, and going from there.    Ellen Bernstein-Ellis Wow, that makes a lot of sense.    Jaime Lee   Yeah, of course, some people didn't text, before their stroke and don't want to text. But given how popular texting has become as a form of communication, I think there are many, many people with aphasia, who would be interested in pursuing texting as a rehab goal.   Ellen Bernstein-Ellis  16:08 Right? You really have to ask, right?    Jaime Lee  16:11 Yes, actually, there's a story that comes to mind about a participant who was in the T-write study, who had stopped using her phone after her stroke. Her family had turned off service; she wasn't going to be making calls or texting.   Ellen Bernstein-Ellis Well, I've seen that happen too many times.  Jaime Lee   And when she enrolled in the study, and she was a participant at Shirley Ryan, because we ran participants here at JMU and they ran participants in Chicago. And she was so excited. I heard from my colleagues that she went out and got a new phone so that she could use her phone to participate in the study. And then her follow up data. When we look at her real texts gathered after the study at the last assessment point, her text consists of her reaching out to all of her contacts with this new number, and saying hello, and getting in touch and in some cases, even explaining that she'd had a stroke and has aphasia.  Ellen Bernstein-Ellis  17:13 Oh, well, that really reminds me of the value and importance of patient reported outcomes, because that may not be captured by a standardized test, per se, but man, is that impactful. Great story. Thank you for sharing that. So well, you've done a really nice job in your 2021 paper with Cherney that's cited in our show notes of addressing texting's  role in popular culture and the role it's taking in terms of a communication mode. Would you explain some of the ways that conversation and texting are similar and ways that they're different? Jaime Lee  17:45 That is a great question, Ellen and a question I have spent a lot of time reading about and thinking about. And there is a great review of research that used conversation analysis (CA) to study online interactions. This is a review paper by Joanne Meredith from 2019. And what the review tells us is that there are many of the same organizing features of face to face conversation that are also present in our online communications. So we see things like turn taking, and we see conversation and texting or apps unfold in a sequence. So what CA refers to as sequential organization.  We also see, just like in face to face conversation, there are some communication breakdowns or trouble sources in online communication. And sometimes we see the need for repair to resolve that breakdown. Ellen Bernstein-Ellis  18:45 Yeah, Absolutely. I'm just thinking about auto corrects there for a moment. Jaime Lee  18:51 And they can cause problems too. When the predictive text or the AutoCorrect is not what we meant to say that can cause a problem.Ellen Bernstein-Ellis  18:59 Absolutely. Those are good similarities, I get that.   Jaime Lee  19:03 I think another big similarity is just about how conversation is co-constructed. It takes place between a person and a conversation partner and in texting, we have that too. We have a texting partner, or in the case of a group text, we have multiple partners. There's definitely similarities. And another big one is that purpose, I think we use conversation ultimately, and just like we're using texting to build connection, and that's really important Ellen Bernstein-Ellis  19:32 Yeah, I can really see all of those parallels. And there are some differences, I'm going to assume. Jaime Lee  19:39 Okay, yes, there are some definite interesting differences in terms of the social aspects of conversation. We do a lot in person, like demonstrating agreement, or giving a compliment, or an apology, or all of these nonverbal things we do like gesture and facial expression and laughter. Those nonverbal things help convey our stance, or affiliation, or connection. But in texting, we can't see each other. Right? So we have some different tools to show our stance, to show affiliation. What we're seeing is people using emojis and Bitmojis, and GIFs, even punctuation, and things like all capitals. We've all seen the all caps and felt like someone is yelling at us over text, that definitely conveys a specific tone, right? Ellen Bernstein-Ellis  20:34 I was just going to say emojis can be a real tool for people with aphasia, right? If the spelling is a barrier, at least they can convey something through an image. That's a real difference.   Jaime Lee  20:45 Absolutely, I think some of the problematic things that can happen and the differences with texting have to do with sequencing and timing. Because people can send multiple texts, they can take multiple turns at once. And so you can respond to multiple texts at once, or that can lead to some confusion, I think we're seeing, but texting can also be asynchronous, so it's not necessarily expected that you would have to respond right away Ellen Bernstein-Ellis  21:16 So maybe giving a person a little more time to collect their thoughts before they feel like they have to respond versus in a person-to-person exchange where the pressure is on?    Jaime Lee   Absolutely, absolutely.  Ellen Bernstein-Ellis Well, why might texting be a beneficial communication mode for individuals with aphasia, Jamie, because you have spelling challenges and all those other things.   Jaime Lee  21:37 Yeah, I think it comes back to what you just said, Ellen, about having more time to read a message, having more time to be able to generate a response. I know that texting and other forms of electronic communication like email, can give users with memory or language problems a way to track and reread their messages. And in some cases, people might choose to bank responses that they can use later. We know this from actually some of Bonnie Todis and McKay Sohlberg's work looking at making email more accessible for users with cognitive impairment. So I think there are some really great tools available to people with aphasia to feel successful using texting. Ellen Bernstein-Ellis  22:30 That's great. I think banking messages is a really important strategy that we've used before, too.  Jaime Lee  22:37 So there's all these other built-in features, that I'm still learning about that are in some mobile phones, that individuals with aphasia can potentially take advantage of. I think some features might be difficult, but there are things like we've just talked about, like the predictive text or the autocorrect. And then again, all these nonlexical tools, like the emojis and the GIFS and being able to link to a website or attach a photograph. I think this is a real advantage to communicating through text. Ellen Bernstein-Ellis  23:10 It lets you tell more of the story, sometimes. One of my members talks about when his spelling becomes a barrier, he just says the word and then that speech-to-text is really helpful. It's just one more support, I guess.   Jaime Lee  23:24 Yes. And we're needing to find out a little bit more about the features that people are already using, and maybe features that people don't know about, but that they would like to use like that speech-to-text. That's a great point.    Ellen Bernstein-Ellis  23:37 Well, how did you end up wanting to study texting for more than an amount of use or accuracy? In other words, what led you to studying transaction? Maybe we can start with a definition of transaction for our listeners?  Jaime Lee  23:51 Sure. Transaction in the context of communication is the exchange of information. So it involves understanding and expression of meaningful messages and content. And this is a definition that actually comes from Brown and Yule's concepts of transaction and interaction and communication. So Brown, and Yule tell us that transaction again, is this exchange of content, whereas interaction pertains to the more social aspects of communication. Ellen Bernstein-Ellis  24:26 Okay, thank you. I think that's really good place to start. Jaime Lee  24:29 Part of the interest in transaction, first came out of that descriptive paper where we were trying to come up with systems to capture what was going on. So we were counting words that the participants texted and coding whether they were initiated or are they texts that are simple responses. We counted things they were doing, like did they use emojis or other multimedia? But we were missing this idea of how meaningful their text were and kind of what was happening in their texting exchanges. So this kind of combined with another measure we had, it was another measure in T-write really inspired by Pagie Beeson and Mira Fein's paper where they were using some texting scripts in their study.  We also love scripting. We wanted to just have a simple measure, a simple brief texting script that we could go back and look at. We had as part of our protocol a three turn script. And I remember we sat around and said, what would be a really common thing to text about? And we decided to make a script about making dinner plans. And so we're collecting these simple scripts. And as I'm looking at these data coming in, I'm asking myself, what's happening here? How are we going to analyze what's happening? What was important didn't seem to be spelling or grammar. What seemed most important in this texting script was how meaningful the response was. And ultimately, would the person be able to make dinner plans and go plan a dinner date with a friend. So it seemed like we needed a measure of successful transaction within texting. Ellen Bernstein-Ellis  26:23 Jamie, I'm just going say that that reminded me of one of my very favorite papers, whereas you started out counting a lot of things that we can count, and it did give you information, like how much less people with aphasia are texting compared to people without aphasia, and I think that data is really essential. But there's a paper by Aura Kagan and colleagues about counting what counts, right, not just what we can count. And we'll put that citation and all the citations in the show notes-- you're  bringing up some wonderful literature. So I think you decided to make sure that you're counting what counts, right? In addition to what we can count.    Jaime Lee  26:59 Yes. And I do love counting. I was trained at the University of Oregon in single case experimental design. So really, behavioral observation and counting. So I am a person who likes to count but that sounds, like counting what counts. I love that. Ellen Bernstein-Ellis  27:13 Yeah, absolutely. In that 2021 paper, you look at the way some researchers have approached conversational analysis measures and you acknowledge Ramsberger and Rende's 2002 work that uses sitcom retells in the partner context. And you look at the scale that Leaman and Edmonds developed to measure conversation. And again, I can refer listeners to Marion Leaman's podcast as a 2021 Tavistock distinguished scholar that discusses her work on capturing conversation treatment outcomes, but you particularly referred to Aura Kagan and colleagues' Measurement of Participation in Conversation, the MPC. We'll put the citation in the show notes with all the others, but could you describe how it influenced your work?   Jaime Lee  27:58 Yeah, sure. That's funny that you just brought up a paper by Aura Kagan, because I think I'll just first say how much Aura's work on Supported Conversation for Adults with Aphasia, SCA, how influential it's been throughout my career. First as a clinician and actually interacting with people with aphasia, and then later in facilitating conversation groups and helping to train other staff on the rehab team, the nursing staff. And now, it's actually a part of my coursework that I have students take the Aphasia Institute's free eLearning module, the introduction to SCA, as part of my graduate course, and aphasia, and all of the new students coming into my lab, do that module. So they're exposed really early on to SCA. Ellen Bernstein-Ellis  28:50 I'm just gonna say me too. We also use that as a training tool at the Aphasia Treatment Program, It's really been a cornerstone of how we help students start to learn how to be a skilled communication partner. So I'm glad you brought that up. Jaime Lee  29:03 Absolutely. So yes, Kagan's Measurement of Participation in Conversation (MPC), was really influential in developing our texting transactional success rating scale. And this is a measure that they created to evaluate participation and conversation. And they were looking actually both at transaction and interaction, I needed to start simply and just look at transaction first. They considered various factors. They have a person with aphasia and a partner engage in a five minute conversation. And they looked at factors like how accurately the person with aphasia was responding, whether or not they could indicate yes/no reliably, and could they repair misunderstandings or miscommunications. And then the raters made judgments on how transactional was that conversation? So, we looked at that measure and modeled our anchors for texting transactional success after their anchors. We had a different Likert scale, but we basically took this range from no successful transaction, partial transaction, to fully successful. And that was really modeled after their MPC.   Ellen Bernstein-Ellis  30:17 Wow. Thank you for describing all of that. Jaime Lee  30:20 Yeah. Another big takeaway I'll add is that, and this really resonated with what we were hoping to capture, the scores on the MPC weren't necessarily related to traditional levels of severity. So Kagan and colleagues write that someone even with very severe aphasia, could score at the top of the range on the MPC. And I think similarly, what we feel about texting is even someone with severe writing impairments could be very successful, communicating via text message, really, depending on the tools they used, and perhaps, depending on the support they received from their texting partner.   Ellen Bernstein-Ellis  31:02 You and your colleagues develop this Texting Transaction Success tool, the TTS, right? What is the goal of this measure?    Jaime Lee  31:13 The goal of the TTS is to measure communicative success via texting. We wanted this functional measure of texting, not limited to accuracy, not looking specifically at spelling, or syntax, or morphology, but something that reflected the person with aphasia-- his ability to exchange meaningful information. I think the measure is really grounded in the idea that people with aphasia are competent and able to understand and convey meaningful information even despite any errors or incorrect output. So this is really relevant to texting because lots of us are using texting without correct spelling or without any punctuation or grammar. Yet lots and lots of people are texting and conveying information and feeling that benefit of connecting and exchanging information. Ellen Bernstein-Ellis  32:08 It sounds like a really helpful tool that you're developing. Could you please explain how it's used and how it's scored? Jaime Lee  32:16 Sure. So the TTS is a three-point rating scale that ranges from zero, which would be no successful transaction, no meaningful information exchanged, one, which is partial transaction, to two, which is successful transaction. And we apply the rating scale to responses from an individual with aphasia on the short texting script that I was talking about earlier. So this is a three-turn script that is delivered to a person with aphasia where the first line there, we ask them to use their mobile phone or give them a device, and the prompt is: “What are you doing this weekend?” We tell the person to respond any way they want, without any further cues. And then the script goes on, we deliver another prompt, “What about dinner?” And then another prompt, “Great, when should we go?” Each of those responses, we score on the TTS rating scale. We give either a zero, a one or a two. We have lots of examples in the paper of scores that should elicit a zero, a one or a two.We feel like it should be pretty easy for readers to use.   Ellen Bernstein-Ellis  33:33 Wow, that's going to be really important. I always appreciate when I can see examples of how to do things. Jaime Lee  33:40 We did some really initial interrater reliability on it. The tools are pretty easy to score. We're able to recognize when something is fully transactional, even if it has a spelling error or lexical error, we can understand what they're saying. And a zero is pretty easy to score, if there are graphemes letters that don't convey any meaning, there's no transaction. Where things are a little more interesting, are the partial transaction. I think about an example to “What about dinner” and the participant responded, “Subway, Mexico.” So that's a one because the conversation, the texting partner, would really need to come back and clarify like, “Do you want to get a Subway sandwich?”  Or “Do you want to go eat Mexican?” It could still be really transactional, and they could resolve that breakdown, but the partner would have a little bit more of a role in clarifying the information. Ellen Bernstein-Ellis  34:36 When you were actually trying to validate the TTS and establish its interrater reliability in your 2021 article with Cherney you mentioned using the Technology Confidence Survey from the 2021 Kinsey et al. article. Having tools that allow us to understand our clients' technology user profile is really informative in terms of understanding what modes of communication might be important to them. We talked earlier about not assuming, right, not assuming what people want to do or have done. Can you describe the survey? And is it available? Jaime Lee  35:13 Sure, yes. This is a survey we developed for the T-write study, the ORLA Plus Electronic Writing study. It's a simple aphasia friendly survey with yes/no questions and pictures that you can ask participants or clients about their technology usage. from “Are you using a computer? Yes or No” or  “Are using a tablet?”, “Are you using a smartphone?”  We ask what kinds of technology they're using and then what are they using it for? Are they doing email? Are they texting? Are they looking up information? Are they taking photos?  It also has some prompts to ask specifically about some of the technology features like “You're texting? Are you using voice to text?” or “Are you using text to speech to help you with reading comprehension of your text?”  At the very end, we added some confidence questions. We modeled this after Leora Cherney and Ed Babbitt's Communication Confidence Rating scale. So we added some questions like, “I am confident in my ability to use my smartphone” or “I am confident in my ability to text” and participants can read that on a rating scale. We use this in the context of the research study to have some background information on our participants. I think it could be a really great tool for starting a conversation about technology usage and goals, with people who are interested in using more technology, or are using it in different ways. This (survey) is in the Kinsey et al. article. It's a supplement that you can download. It's just a really good conversation starter, that when I was giving the technology survey to participants, many times they would take out their phone or take out their iPad and say, “No, I do it. I use it just like this”. It was really hands on and we got to learn about how they're using technology. And I definitely learned some new things that are available. Ellen Bernstein-Ellis  37:20 I think many of us use kind of informal technology surveys.  I'm really excited to see the very thoughtful process you went through to develop and frame that (technology use). That's wonderful to share. Jamie, can you speak to the role of the TTS in terms of developing and implementing intervention approaches for texting? You just mentioned goals a moment ago? Jaime Lee  37:42 Sure. I think we have some more work to do in terms of validating the TTS and that's a goal moving forward. But it's a great starting place. If you have a client who wants to work on texting, it only takes a few minutes to give the script and then score their responses and gives us a snapshot of how effectively they're able to communicate through text. But in terms of developing intervention, to support texting, that's really where we're headed with this. I mean, the big drive is to not just study how people are texting, but really to help support them and texting more effectively and using texting to connect socially and improve their quality of life. But with any kind of intervention, we need a really good outcome measure to capture potential changes. Another reason I'm motivated to continue to work on the TTS, if people with aphasia are going to benefit from a treatment, we need rigorous tools to capture that change and document that potential change. 38:50 Ellen Bernstein-Ellis Absolutely. Absolutely. Jaime Lee  38:53 At the same time, I'd say the TTS isn't the only method we are focused on, we're really interested in understanding what unfolds during texting interactions. What's happening in these interactions. So, most recently, I've been working with my amazing collaborator, Jamie Azios, who is an expert in Conversation Analysis. I've been working with Jamie to say, “Hey, what's happening here? Can we use CA to explore what's going on?”  Ellen Bernstein-Ellis  39:25 Well, Jamie, you probably heard this before, but Conversation Analysis can sometimes feel daunting for clinicians to use within their daily treatment settings. In fact, we've had several podcasts that have addressed this and have asked this question. What are you finding? Jaime Lee  39:40 I can definitely relate because I am still very new to CA and learning all the terminology. But Jamie and Laura and I are actually working on paper right now, a CAC special issue, because we presented some data at the Clinical Aphasiology Conference and then will have this paper. We'll be submitting to a JSHL on how we're applying CA to texting interactions. That goal is really based around understanding how people with aphasia and their partners are communicating via texting and looking at these naturalistic conversations to see what barriers they're coming across, and what strategies they are using to communicate in this modality. Ellen Bernstein-Ellis  40:27 That makes a lot of sense. And it really circles back again to communication partner training. That does not surprise me. Jaime Lee  40:33 We're seeing some really interesting, creative, and strategic behaviors used both by people with aphasia and their partners. We're seeing people link to a website, or instead of writing out the name of a restaurant, you know, “meet me here” with a link, or using an emoji to help convey their stance when they can't meet up with a friend. They might have more of an agrammatic production. But that emoji helps show the emotion and we're seeing a lot of people with more severe aphasia using photographs really strategically. Ellen Bernstein-Ellis  41:09 So those are the strategies are helping and I'm sure that CA also looks at some of the barriers or breakdowns, right?  Jaime Lee  41:15 Yes, we're seeing some breakdowns, trouble sources in the CA lingo. In some instances, we see the partner clarify, send a question mark, like, “I don't know what you're saying”. And that allows the person with aphasia, a chance to self-repair, like, “Oops, here, this is what I meant.” And that's really useful. We also have seen some examples of breakdowns that may not get repaired. And we don't know exactly what was happening. In those instances, I suspect there were some cases where maybe the partner picked up the phone and called the person with aphasia, or they had a conversation to work out the breakdown. But we really don't know because we're using these data that were previously collected. So a lot of this does seem to be pointing towards training the partners to provide supports, and also helping people with aphasia be more aware of some of the nonlinguistic tools, and some of the shortcuts that are available, but there's still a lot to learn. Ellen Bernstein-Ellis  42:22 Well, Jamie, as you continue to explore this work, I know you're involved in a special project that you do with your senior undergrads at your university program at James Madison. Do you want to describe the student text buddy program? It sounds really engaging. Jaime Lee  42:38 Sure. This is a program I started here at JMU. JMU has a really big focus on engaging undergrads and research experiences. And we have students who are always asking for opportunities to engage with people with aphasia. Particularly during COVID, there weren't these opportunities. It just wasn't safe. But I know some of the participants from the T-write study and some people with aphasia in our community here in Harrisonburg, were looking for ways to be involved and continue to maybe practice their texting in a non-threatening situation. So this was a project and I was actually inspired by one of the students in my lab, Lindsay LeTellier. She's getting her master's degree now at the University of New Hampshire. But Lindsay had listened to an interview with one of our participants where she said she wanted a pen pal. And Lindsay said, “Oh, this participant says she wants a pen pal, I'd love to volunteer, I'll be her pen pal.” And I said, “Lindsay, that's great. I love the idea of a pen, pal. But if we're going to do it, let's make it a research project. And let's open it up and go bigger with this.” So Lindsey helped spearhead this program where we paired students with people with aphasia to have a texting pen pal relationship for four weeks. And in order to be able to kind of watch their texts unfold, we gave them a Google Voice number, so that we can watch the texts.  We've really seen some really interesting things. We've only run about 10 pairs, but all of the feedback has been really positive from the people with aphasia, they felt like it was a good experience. And the students said it was a tremendous learning experience.  We're seeing some interesting things. Using CA, Jamie and I presented this at IARC, sharing what the students/person with aphasia pairs are doing that's resulting in some really natural topic developments and really natural relationship development. Ellen Bernstein-Ellis  44:39 Nice! What a great experience, and we'll look forward to hearing more about that. Jamie, I can't believe how this episode has flown by. But I'm going to ask you a last question. What are you excited about in terms of your next steps for studying texting? Jaime Lee  44:57 I think we definitely want to continue the Text Buddy project because it's such a great learning experience for students, so we'll be continuing to do that. Jamie and I have applied for funding to continue to study texting interactions and use mixed methods, which is a pairing of both of our areas of expertise. I think there's just more to learn, and we're excited to eventually be able to identify some texting supports to help people with aphasia use texting to connect and be more effective in their communication.   Ellen Bernstein-Ellis  45:35 Well, Jamie, this work is going to be really impactful on the daily lives and the daily ability for people with aphasia to have another mode of support for communicating. So thank you for this exciting work. And congratulations again on your Tavistock award, and I just am grateful that you are our guest for this podcast today. Thank you. Jaime Lee  45:58 Thank you so much, Ellen. This has been great, thanks. Ellen Bernstein-Ellis  46:01 It's been it's been a pleasure and an honor.  So for our listeners, for more information on Aphasia Access and to access our growing body of materials, go to www.aphasiaaccess.org. And if you have an idea for a future podcast series topic, just email us at info@aphasia access.org. And thanks again for your ongoing support of aphasia access. References and Resources  Babbitt, E. M., Heinemann, A. W., Semik, P., & Cherney, L. R. (2011). Psychometric properties of the communication confidence rating scale for aphasia (CCRSA): Phase 2. Aphasiology, 25(6-7), 727-735. Babbitt, E. M., & Cherney, L. R. (2010). Communication confidence in persons with aphasia. Topics in Stroke Rehabilitation, 17(3), 214-223. Bernstein-Ellis, E. (Host). (2021, July 29). Promoting Conversation and Positive Communication Culture: In conversation with Marion Leaman (No. 73) [Audio podcast episode] In Aphasia Access Aphasia Conversations. Resonate. https://aphasiaaccess.libsyn.com/episode-73-conversation-and-promoting-positive-communication-culture-in-conversation-with-marion-leaman Brown, G., & Yule, G. (1983). Discourse analysis. Cambridge. University Press. https://doi.org/10.1017/CBO9780511805226 Fein, M., Bayley, C., Rising, K., & Beeson, P. M. (2020). A structured approach to train text messaging in an individual with aphasia. Aphasiology, 34(1), 102-118. Kagan, A., Simmons‐Mackie, N., Rowland, A., Huijbregts, M., Shumway, E., McEwen, S., ... & Sharp, S. (2008). Counting what counts: A framework for capturing real‐life outcomes of aphasia intervention. Aphasiology, 22(3), 258-280. Kagan, A., Winckel, J., Black, S., Felson Duchan, J., Simmons-Mackie, N., & Square, P. (2004). A set of observational measures for rating support and participation in conversation between adults with aphasia and their conversation partners. Topics in Stroke Rehabilitation, 11(1), 67-83. Kinsey, L. E., Lee, J. B., Larkin, E. M., & Cherney, L. R. (2022). Texting behaviors of individuals with chronic aphasia: A descriptive study. American Journal of Speech-Language Pathology, 31(1), 99-112. Leaman, M. C., & Edmonds, L. A. (2021). Assessing language in unstructured conversation in people with aphasia: Methods, psychometric integrity, normative data, and comparison to a structured narrative task. Journal of Speech, Language, and Hearing Research, 64(11), 4344-4365. Lee, J. B., & Cherney, L. R. (2022). Transactional Success in the Texting of Individuals With Aphasia. American Journal of Speech-Language Pathology, 1-18. Meredith, J. (2019). Conversation analysis and online interaction. Research on Language and Social Interaction, 52(3), 241-256. Ramsberger, G., & Rende, B. (2002). Measuring transactional success in the conversation of people with aphasia. Aphasiology, 16(3), 337–353. https://doi.org/10.1080/02687040143000636 Todis, B., Sohlberg, M. M., Hood, D., & Fickas, S. (2005). Making electronic mail accessible: Perspectives of people with acquired cognitive impairments, caregivers and professionals. Brain Injury, 19(6), 389-401. Link to Jaime Lee's University Profile: https://csd.jmu.edu/people/lee.html  mu.edu/people/lee.html 

Thanks for listening in today. I'd like to welcome you to this episode of Aphasia Access Conversations Podcast. I'm Katie Strong, Associate Professor in the Department of Communication Sciences and Disorders and Director of the Strong Story Lab at Central Michigan University and serving as today's episode host. Today I'm talking with Dr. Sameer  Ashaie from the Shirley Ryan Ability Lab. Before we get into our conversation, Let me tell you a bit about our guest.        Dr. Ashaie is a Research Scientist in the Think and Speak Lab at the Shirley Ryan AbilityLab and a Research Assistant Professor in the Department of Physical Medicine and Rehabilitation at the Feinberg School of Medicine, Northwestern University.  He earned is PhD in Speech-Language-Hearing Sciences at the Graduate Centre, CUNY.  He is recipient of the 2022 Tavistock Trust for Aphasia Distinguished Scholar Award. Dr. Ashaie was also a recipient of NIDILRR's Switzer Merit Fellowship and NIDILIRR's Advanced Rehabilitation Research and Training post-doctoral fellowship. His lab the Shirley Ryan Affective and Emotion Rehabilitation Lab (SAfER) focuses on aphasia rehabilitation, particularly identifying post-stroke depression and related psychosocial disorders. He employs a variety of techniques in his research including eye-tracking and heart-rate variability.   In this episode you will:  Learn about the value of having researchers integrated into clinical care. Be empowered to think about depression on a continuum and why how we measure depression matters. Hear how network models can be a more useful way to examine complex disorders.    KS: Sameer welcome and thank you for joining me today. I'm really excited about this conversation with you, and having our listeners get to know you and your work .  SA: Thank you for having me here. You know I listen to the podcast, and I wasn't expecting to be here one day. So, it's a privilege being here. I KS: Congratulations on receiving the Tavistock Distinguished Scholar Award. Can you tell us a bit about the impact of receiving this recognition?  SA: It's a big honor. You know, oftentimes as an early career researcher in the field of physiology or I guess any field me especially I'm wondering like, if I'm doing whatever I'm doing, is it making sense? Is it making a difference? Are people noticing it? So getting this award especially and people that have gotten before me and the work they're doing? It really validates what I'm trying to do as an indication of where I'm trying to take my research program and I'm hoping that it has an impact on people with aphasia, and as well as the broader research community. KS: Absolutely! I'm excited to start talking about your research. But before we get to that, I'd love to hear a little bit about how you came into the field of speech language pathology, because it wasn't a direct line. Your story is in fact quite interesting. And I think you refer to it as a winding path. Could you tell us a little bit about how you came to be working in the area of aphasia? SA: I started my PhD in theoretical linguistics, looking at generative phonology. And then I ended up taking a class with Dr. Loraine Obler. It was a class on the historical debates on language localization. And that really got me interested in language. After two years in theoretical linguistics, I switched tracks to neuro linguistics, communication science disorders. Because I really got interested in just language, more than just a theoretical perspective that I had as a linguist. And then, of course, there are two people that really had an impact on my career and continue to have an impact on my career. One is that I did my PhD with Dr. Jamie Reilley at Temple. And that's how I got interested into sort of the semantic aspects of aphasia. And he was really supportive and was really great in how we think about science and how we do science.  And then I would say that the person who's had the most impact and continues to have the most impact, and really has made me think about this field is Dr. Leora Cherney. And I'm really indebted to her in terms of how I think about this field, how I think about our participants, how I think about how aphasia impacts their life in totality. And just seeing that kind of dedication and thinking about research that is support to impact people's life. And getting that inspiration from Leora. She has been really critical for me to really falling in love with this field, because you're keeping your participants at the center of the work you do. I mean, you might not see the impact, but you're trying to keep them that that is what your aim is. And I guess that's how I kind of came to this field, you know, some from sort of theoretical linguistics and interested in semantics and then getting a postdoc with Leora. And being inspired by her and the support she's given me to explore things. And carry a different line of research, but always keeping the participants in mind. KS: So, you're a research scientist who works in a rehabilitation hospital. I'm not sure if our listeners know exactly what you do all day long. Would you walk us through a ‘typical day' – if there is such a thing? What do you do in your lab? Would you talk us through that a bit?  SA: Yeah, I, myself did not know what a research scientist is what I was doing! It was all new to me as well. It's different than a traditional academic position, and especially in a place like, Shirley Ryan AbiityLab, which is a rehab hospital. Especially the model in our rehab hospital is that researchers are integrated into the clinical care. So, what I mean by that is that our labs are situated right where therapies are happening. So even though we're not involved in therapy that's happening with the patients getting the care at that time, we can see different types of therapies. That might be OT (occupational therapists) giving therapy, or speech-language pathologists, physical therapists. So that's that integration. You really get to see patients. You get to see sort of different issues that you might not think about, because we're so discipline focused, right? So, it opens up your mind to all sorts of possibilities, collaborations, issues you might not think about. For example, physical factors are really important for people, but seeing that live and that being worked on, it has a different impact on you. The second thing is that, as a research scientist, you're not teaching classes. Your primary work is centered around research, which, which has its perks, but also that you miss sometimes that interaction, you might have had students in a traditional setting. Not that we don't get students (at Shirley Ryan AbilityLab), we do. But the primary focus is really getting the research program started. And there are no things like semesters, you have the whole year. We work on the hospital schedule. And as an early career (professional), a lot of what you do is dependent on how you get funded and that's how you established your lab. So we so for example, as an early career person, you might not necessarily have a lot of students working for you because we're not in a Communication Sciences Disorders department. So that's sort of different. But the main thing is that it's an academic environment, but it's not a university.  KS: Yeah yeah you're right there in the thick of all of that rehab work. That's fabulous. I had the honor of doing a tour at Shirley Ryan at one of the Aphasia Days before COVID hit and it's just such a beautiful facility. It's just stunning. I love hearing about your path and a little bit about your work life and I've been interested in your research for a while now. I'm so excited to have this conversation. Your work in in mood and depression is something that really is an important area and I was hoping as we get started in this conversation if you could frame for us why this is such an important topic that extends to research and clinical work. SA: This is such an important question. And when I started my post-doc in the field of aphasiology, I was not interested in depression or mood. I was really interested in  semantics. But, you know, talking to the patients being embedded in a clinical environment and talking to family members, everybody talked about the importance of mood, and depression. And what I realized is that everybody's talking about its importance. Everybody gives it a nod. But we're not all assessing it in a systematic manner. But we all recognize its importance, and people need this support. So, I started digging in and seeing in the literature what's going on. I came across this meta-analysis that was published in 2017, I think by Mitchell et al., and they looked at I think around 108 studies of stroke and only five studies with people with aphasia have looked at depression. I was like, that does not sound good. And then, studies that are in the field of aphasiology that look at depression used measures hadn't been validated in our field. So, I was like, we all recognize that this is an important problem and people need the support, but before we can go anywhere, that we need to figure out a way, how we can identify depression in people with aphasia, systematically.  And of course, the big challenge I started thinking about that time is “how do you ask people that have language deficits about their inner feelings? Without sort of prompting them?” You know, we all use scales, those of us who do assess depression, we might modify them. But sometimes those questions are tricky to understand. And if you're modifying them, you might lead a person on to an answer. That's one thing. We can rely on caregiver reports for depression, and they're good. But we also know that those reports can underestimate and overestimate depression. And they're highly impacted by caregivers' mood itself. That was another thing. So, I wondered what can we do that assesses this systematically? And we can also include people with severe aphasia, who we often just exclude from these studies and who might have some of these most issues when it comes to mood or depression. There's some work in neurotypicals, that use a variety of techniques. For example, eye tracking. Research has shown that people who are depressed, tend to look longer at sad faces, or stimuli that denote sad valence. And their response is blunted away from positive stimuli. For example, if people are depressed they might look longer at a sad face and they might also look away from a happy face. There is also work looking at heart rate variability as well which uses certain metrics that you could derive from variability in between your heartbeats might tell us something about depression. This is also true with the dilation of our pupils, or EEG. And of course, none of these measures are perfect. Like we know with anything, we're not getting perfect measurements. But I started thinking that “yes, they might not be perfect, but can I come up with an algorithm or some kind of a composite that takes all these things into account, because if they all point to the same problem, then that problem must be there.” So that's one of the things I'm trying to do right now is combine pupillometry, heart rate variability, and eye tracking to see if we can come up with some kind of a metric that can identify depression. That way, we can move away from language in the sense that we're only using minimal language in terms of directions. We might just show people a happy face, or some emotion that some stimuli that denotes emotion.  The second sort of thing, which is really important is that not thinking of depression as something you either have it or you don't have it. It's on a continuum. It could fluctuate. One day, you could have some symptoms. Another day, you might not have any other symptoms. Or in the same day, it might fluctuate. So, how do we assess that? Related to that is not just relying on some scores. For example, we all just take, like, let's say we take a common scale, like the PHQ-9 (Patient Healthcare Questionnaire-9th Edition) and we might take the scores, and we sum them up and say, “hey, this person they're above a cut off”. But in that kind of approach, we're also missing what these individual symptoms are doing. The person might not endorse every single symptom in that scale. But they might endorse some symptoms. So are we just going to say, “no, they didn't meet a cut off, but they had three symptoms that they were on the scale. For example, ‘I was sad. I was fatigued, I had a loss of appetite.” But everything else wasn't there. Are we just going to negate those symptoms? So how do we take these symptoms into account as well, when we are thinking about depression. Within the broader field of psychopathology, there's a lot of movement thinking about individual symptoms as well. So, I'm just basically taking that and applying it to our field. It's nothing new that I'm coming up with, rather is just really seeing what people in the field of psychopathology are doing, confronting all these problems. And thinking about how this can applied to our field, because they might really have a direct impact on something we're doing when it comes to treatment, right? For example, if we start thinking about individual symptoms and that day a person is fatigued. Well that might directly impacted how they respond to treatment rather than just as a sum score. So that's another angle I'm taking when it comes to this work and depression. KS: That is so important. We all know what matters, but can you help us to know like, how big of an issue is mood depression in aphasia, you know, incidence prevalence or what, you know, do we know anything about that? SA: We do. And if you look at the literature, once again, they're so varied. Some papers might report 70%, some papers might report 30%. But I would say at least, it ranges anywhere from 30 to 70%. But I think a lot of that is also dependent on how we're assessing it. Going back to the scales that we are using and how reliable those scales are. There was a systematic review early on that indicated most of these skills might not even be valid. Are we use a caregiver reports? Are we supplementing that with something? In the general stroke population, we know at least 1/3 of stroke patients have depression. And with aphasia, it's between that 1/3 to 70%. It is most likely much more than that. But I think, to really get at it, we really have to start thinking about the tools we're using. But we know it's an issue because clinicians report it, patients report it, caregivers report it, whatever literature we have, which is not much, those studies report it. In our own study, we looked depression that might not meet the threshold for major depression. And we had around 20%, and those that meet (criteria) for minor depression, those were like, 18% or so. So, it's in that 30-40% range. It's a big issue.  But I think the bigger issue is that we are really missing how many people have it? How many people have the different symptoms? And what we also have is an incidence rate, a snapshot of the incidence rate, right? Like, you know, at six months, at one year, but we really need to start thinking about daily and how sort of depression changes over time. It will not be sort of weekly or yearly, we don't have that much longitudinal work, either. When I talk about daily, I talk about real world as well. I don't know if that answers your question… KS: It does. Yes, absolutely. Yeah, I love that, that it's we have some ranges, they are not probably as accurate as they could be, because we don't have the right tools to assess it, and that they're just a snapshot that we're not really looking at this over time or, as you said that day, that daily basis.  SA: One thing that I want to point out is that, and even with the lack of tools it's good that we are still assessing for depression. I don't want to make it seem like that there's nothing out there. But I think like for all of us, even the tools we're coming up with, we should always be thinking in our own, how can we improve upon whatever we have. And we all get attached to the methods we use. But I think at the back of our head, we should always be like, “can we improve these methods? Can we do something better?” Because ultimately, it's not about us. It's about people, our patients, our participants, family members that we're trying to do these things for. So it's really great that tools do exist, but we have to be candid, that we might not be getting everything out of them. They're a great steppingstone, but we have to constantly go back and build and just keep on taking new developments in the field of psychopathology in the field of measurement science and applied to them so that our field is moving along as well. KS: It's kind of the essence of evidence-based practice, right? We're using the best tools that we have at the moment, but that certainly we need to be on the lookout for what's coming in the newer literature or tools. Sameer, you have some really cool projects going on related to depression and mood. You talked a little bit about them earlier, but could you give us a little more detail on what you've got going on?  SA: So, one thing I could kind of hone in on that I mentioned earlier is on eye tracking. Right now we're trying to come up with some kind of an algorithm where we are relying minimally on language. So just the directions are language based. We're getting people in, and we're doing a combination of eye tracking changes in the pupil dilation and heart rate variability, as people are looking at different stimuli that denote different emotions. We have a paper out that looks at the feasibility of it. And what we're basically looking at trying to quantify that using some existing scales and caregiver reports. Can we then take these metrics and see whether people are looking at sad or happy faces, or any other stimuli that denote emotions, and is that related to these traditional scales. And then how can we then come up with a metric based on these three measures, pupillometry, heart rate, and some of the eye tracking indices that can point out depression in people with aphasia? We're using these tools, but the approach is out there. Anytime people are validating new tools, they have to rely on existing tools and go through these different iterations. So right now, we're in the first iteration trying to see what kind of metrics we can extract and what those metrics can give us that are easy to use. And one thing is that eye tracking or heart rate variability over the years, they have become really accessible, and the tools are not expensive themselves. So, with the aim that down the line, can this be used in the clinical setting? Of course, we're far away from that. But that's the end goal, we hope as a quick diagnostic check. KS: Okay, yeah, that's what I was going to ask you, because we've got a lot of listeners who are clinicians. And, you know, sometimes as clinicians, it's difficult to see the relevance of things like eye tracking and heart monitoring, when you're reading literature, when you're trying to figure out, “How can I help this person right in front of me?” So, I was hoping you could explain a little bit why those tools to track variables are so important. SA: I think this is a great question. And I think the big thing is that sometimes we just need to demystify these tools. I liked the way you framed it. We really have to think of them as tools. They're tools that were trying to use to assess a problem that might be difficult with the traditional language measure. That's really it. It's not they are better than behavioral measures. It's that because people aphasia have difficulties in language production and comprehension, can we use something else that relies minimally on language? That's really it. It's not some kind of fancy approach. Yes the tools themselves might sound fancy and stuff, but really the aim is it's just a tool that's addressing a certain problem. And with heartrate variability, we can already see because now it's so common, right? All our Fitbit or Apple Watches, they all have it. And even at a basic level, we're starting to think like, “Oh, this is what my activity level refers to.” So, I've started thinking about those kinds of things in a clinical setting. And the same thing with eye tracking. If these tools are sort of readily available, can we train people to use them in a quick way? Because of course, you could do fancy analyses, but you could also look at just quick measures that if the pipelines are in a place that people could just pull it out. Just like when clinicians give a battery of tests, if you ask me, I'm not a clinician, that's really complicated. You're working with a human being you have to change it on the fly. But people get trained on it all the time and can do it. It is the same thing with these tools but if we are successful in coming up with these metrics and these algorithms.. why not? Can clinicians be trained on using these tools in a clinical setting.  KS: It's exciting to be thinking about that identification of depression or mood disorder. We've got lots of work to do on what to do once it's identified, but just the identification is, as you said, that first step. I was curious if you might be able to recommend something to our listeners, you know, as I said, lots of us are clinicians, about what we should know or do right now about supporting mental health and people with aphasia. SA: I think all the clinicians I've talked to everybody recognizes the problem. That's the biggest step first of all. I think then it is really being aware of systematically assessing it. To be clear, I don't want to negate the support part. That's the end goal. But if we're not assessing depression routinely, then we're missing a big chunk. I want to keep stressing that point. I think the one thing clinicians can do is to start assessing people to the best of one's capability. If you're using a scale, then being systematic with that scale. If you're giving it in one iteration, you're giving it one way, on Day One. When you give it again, try to be as close in how you previously administered it so that we we know that you are assessing that same construct.  The second thing is what I've touched on earlier, is that thinking of depression as a continuum and that it fluctuates. It's not enough to just give a screening once, or to assess this person's mood, pretreatment and post treatment. But what about daily? Because if you start looking at daily variability, you might really start thinking, “Oh, no, we're all here. Like the patient he was feeling kind of down today. I don't know if you've put enough effort into it or something along those lines.” Well, low motivation and those kind of things are symptoms of depression. So I'd like to encourage clinicians to start thinking about assessing this daily.  And I think then, once we start sort of assessing it routinely, and making it a part of our work and not thinking of it as separate. That's the key. Not thinking about it like language is here, depression here. Like you know, the work you do, Katie, on narratives or stories, this is all interactive. They're all impacting each other in some sort of a loop.  And then lastly, once we're getting these, and we're routinely assessing people and getting them, then thinking about getting mental health support. And for that, we really have to start thinking about interdisciplinary work. And you could speak to that as well, because I know that you have those projects going on. We can do everything on our own, working with psychologists, referring people…once we can define these basic systems, and then, you know, down the line and training psychologists or psychiatrists and different techniques that they can work with people aphasia. Or clinicians who are up and coming getting some training. And that this is just part of routine care. It's not something we recognize the importance, but then we kind of put it on the back burner.  KS: Yes, right the back burner. Or say, “we don't have the tools, so we don't know what to do but we recognize it's a problem, but we don't do anything about it.” I agree. Sameer, since you brought up the interdisciplinary work and you have developed some relationships in psychology. I feel like you're kind of an exemplar interdisciplinary collaboration. Could you talk about how this collaboration has influenced your work and give our listeners any tips on how to develop such a rich collaboration? SA: All of the work I'm doing in depression and thinking about this is really influenced by people in the department of psychiatry and psychology. Much of my collaboration is with Dr. Stewart Shankman, who is the Chief Psychologist at Northwestern. And being a part of the National Institute of Mental Health (NIMH) thinking about “how do we conceptualize depression?” and things like that. I just reached out to him, because I was interested in his work. I think we have to not be scared that people might not respond if we reach out. I just emailed him, and he was nice enough to respond. And I started attending his lab meetings and presenting our work to the lab and this problem, “how do you assess depression in people that have language deficits. How do we assess their inner feelings when they can't express themselves?” Being embedded in sort of in his work group, I was really exposed to this work. I don't think I would have been exposed to the work that people in that field are doing. For example, debates about how do we think about symptoms? Or how do we integrate these tools? How do we think about different emotions? And then applying it to our field of CSD. And thinking about metrics of depression. My work has really been influenced by how people in that field are grappling and using these issues. One can't do this work in a void. If there are people who are doing this work and that's their field, it only benefits us to form collaborations with them, learn from them, and bring our unique problems to them. So that we could come up with solutions that integrate the best of our knowledge domains. In other words, that team science approach is really the approach I'm taking towards this issue of depression. I think any work we do in the field of psychosocial disorders, mood, anxiety, fatigue, or whatever, I think it's really important that we start working with people who have focused their career on this issue. KS: I so appreciate you sharing that. And even just the simple tip of putting yourself out there to send an email and introduce yourself to someone who's from a different discipline to start that relationship is important. I envision through attending his lab meetings, you're there in his world, learning about things in a way that you wouldn't be, if you weren't a part of what he's got going on. And thinking deeply about how you can apply that to your interests in aphasia. I'm so excited. Our field just needs this innovation and it's exciting to hear about the work you're doing. SA: If I just did all on my own, I would have been just looking at what's in our field, what's in stroke, looking at papers…but you're not embedded in people who are doing this daily. They might not be doing it in our population, but this is what they're doing. And they're grappling with the conceptual issues as well. Tools, measurement, scales, everything. So that's a huge benefit to us because when we think about depression and stuff, yeah, the work has been done, but when you're embedded in that setting, you could take some of the newer things and start applying it as well. Seeing how we can move rapidly. And of course, then the flipside is like, also the collaborators have to be willing to collaborate with you. Dr. Shankman, he's been great. He's been willing and he's been great at mentoring me. I think most people, if you reach out, and you explain what you're trying to do people are willing and you also can contribute to their work, that I think that you know, these relationships will form. KS: Well, that is how cutting-edge work gets done. It's exciting to hear about it. You also have some additional interesting work, particularly in network analysis. Sameer, could you tell us what network analysis is, and why it's important to life with aphasia?   SA: In a nutshell, if we start talking about networks, networks are everywhere, right? Most of us are privy to the notion of social networks. That we're a bunch of friends, we're connected to each other. And a group of friends might cluster together, and then that cluster is connected to someone else. Anything, we take a look at it, if it's complex, it forms a network. Consider airports, highways, how they're interconnected. Certain things are central and more important than others. That's a network. People often give an example a flock of birds.  Birds might have different characteristics. But when they form a flock, it's made up of different parts, but they're all interacting together to form that flock. That's basically what network is. And it's derived from graph theory in mathematics. But at the end of the day, it's about looking at complexity. Anything that's complex, we could think of it as networks. So the work of network analysis, it's a collaboration between me and Dr. Nichol Castro at Buffalo. Both of us are interested in this approach and we decided to tackle this together. Right now we're building a network model of aphasia. One of the reasons, we decided to think about network approach is that going back, you know, we have these these two approaches, and people do integrate them. People do give nod to them, but impairment-based approach an LPAA (Life Participation Approach to Aphasia). And it's not to say that people that focus on impairment don't care about LPAA, or people that embrace LPAA, don't care about impairment. But generally, there is some kind of distinction being made, either implicitly or explicitly. And you might give nod that one thing is more important than other. But me and Nichol, we started thinking rather than thinking, “Okay, rather than thinking about what is important (language, or depression or anxiety) what about coming up, and thinking about all of them interacting in the network. And not assigning a priori importance to either one of them but rather looking at these interactions between multiple factors, and how they might impact each other, so that we're not missing anything, because aphasia is complex. It's not just about language. It's not just about depression. It's not just about supports (social support). It is about everything. So that's where a network model becomes useful. And then from there on building these initial models, then one could start thinking about treatment. That it is possible in a network, that one thing is more important than the other. And that is taking it one step further in an individual, Individual, A versus B, something might be more important in Individual A, like depression, and in Individual B it's communication confidence. We could start by building a big model first. And of course, all these things have steps and eventually come to that and thinking about how can we identify critical, important factors for a person that we could intervene on? But before we could do that, we wanted to build a bigger model at a group level, and start seeing what things are important in this network? And, and not thinking like, “Okay, I'm gonna just call aphasia…and we all are used to saying ‘aphasia is a disorder of language. Blah, blah, blah,' could be also impacted.' But aphasia is a complex disorder, let's see how these all these things interact.” You don't have to assign the importance to A or B. Or say like, “Okay, I'm going to look at attention, maybe that's about language.” Instead, let's see how all of them are impacting each other and are some things more important than others. I think with this kind of approach…all of us have this thinking. We're just trying to come up with a model that addresses this. And eventually, then this kind of model doesn't have to be just limited to outcomes. People could integrate brain, genetics, you could have different layers. And that goes back to your work about interdisciplinary collaboration. When you start thinking about things as a network, that can also extend to the network of people who are doing work in aphasia. That if it's a complex disorder, and people are looking at all these complexities, because not everybody can do everything that we can take the network of future researchers, and then why not integrate and use that network model for the vision and see all these things? That's what we kind of really are trying to get at. KS: The potential is powerful. Wow. Well, you've got a manuscript in the works that's about this complexity of participation poststroke. I really enjoyed reading about the project. But one thing that really struck me in the findings was how positive affect impacted participation. Could you tell us about this and the project?  SA: So this is all pre-existing data. We wanted to establish some sort of causal relationship at Time Point 1. For example at 3 months post discharge, can you predict something at 12 months post discharge? And one the reasons we were interested in positive affect is that we always think about depression, but positive affect is there too, right? And having positive affect could impact people in a positive way. We wanted to look at all these things, put them on the network and see how they're interacting to determine what might be causing or establishing some sort of causality. What was really interesting is that we thought that perhaps social support would predict participation. But it was really positive affect early on, that was predicting many of these things. When you really start thinking about it, it's not that surprising, because if you're feeling positive, and psychology, then you're going to seek out more help. And then you're going to seek out more help, you might participate more in the community. But having that affirmation is critical, because then once again, it goes back to a question mental health support. How can we focus on positive affect, as well, in our treatment? Maybe, if that's kind of integrated with intervention. If people are feeling better, or happier with that sort of, you know, give them some push towards seeking more help? And it's all cyclical, right? And that's what we are seeing, at least in this early work. KS: Oh, it's really interesting. I think clinically we know that in our gut, but is there something we can do to promote that or help support that down the road? This fabulous, fabulous! Well, Sameer, this time has gone by quickly. I've enjoyed the conversation. As we wrap up, do you have any final thoughts you'd like to share with our listeners? SA: Thank you for having me here. And it's a privilege being in this field, especially as somebody who was trained early on as a linguist, and now I'm doing complete something else. And I'm working with clinicians. It's an honor to participate. It's really a privilege. Thank you for having me here. KS: It's fabulous that you're here and doing this important collaborative work. Thanks for spending time with us today. You've given us lots of food for thought. Listeners, check out the show notes and I'll have links to all of the Shirley Ryan AbilityLab details there as well as Sameer's work and some of the other things that we talked about during today's conversation.  On behalf of Aphasia Access, we thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org If you have an idea for a future podcast topic email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.   Websites and Social Media Shirley Ryan Ability Lab  https://www.sralab.org/   Shirley Ryan Think + Speak Lab https://www.sralab.org/research/abilitylabs/think-speak-lab  Shirley Ryan Affective and Emotion Rehabilitation (SAfER) Lab https://www.saferlab.net/   Shirley Ryan Ability Lab on Twitter/Facebook @AbilityLab    Interested in Digging Deeper?  Ashaie, S., & Castro, N. (2021). Exploring the complexity of aphasia with network analysis. Journal of Speech-Language-Hearing Research, 64(10), 3928-3941. https://doi.org/10.1044/2021_JSLHR-21-00157  Ashaie, S. A.,  & Cherney, L. R., (2020). Eye tracking as a tool to identify mood in aphasia: A feasibility study. Neurorehabilitation and Neural Repair, 34(5), 463-471. https://doi.org/10.1177%2F1545968320916160  Ashaie, S. A., Engel, S., & Cherney, L. R. (2022). Test-retest reliability of heart-rate variability metrics in individuals with aphasia. Neuropsychological Rehabilitation, 18, 1-25. https://doi.org/10.1080/09602011.2022.2037438  Ashaie, S. A., Hung, J., Funkhouser, C. J., Shankman, S. A., & Cherney, L. R. (2021). Depression over time in persons with stroke: A network analysis approach. Journal of Affective Disorders Reports. https://doi.org/10.1016/j.jadr.2021.100131  Mitchell, A. J., Sheth, B., Gill, J., Yadegarfar, M., Stubbs, B., Yadegarfar, M., & Meader, N. (2017). Prevalence and predictors of post-stroke mood disorders: A meta-analysis and meta-regression of depression, anxiety and adjustment disorder. General Hospital Psychiatry, 47, 48–60. https://doi.org/10.1016/j.genhosppsych.2017.04.001 

During this episode, Dr. Katie Strong, Associate Professor in the Department of Communication Sciences and Disorders and Director of the Strong Story Lab at Central Michigan University talks with Dr. Jackie Hinckley from Nova Southeastern University about stakeholder engaged research and Project BRIDGE.   Dr. Jackie Hinckley is Professor and Director of the Undergraduate Program at Nova Southeastern University. She is Board Certified in Neurogenic Communication Disorders by the Academy of Neurologic Communication Disorders and Sciences (ANCDS) and Fellow in Person-Centered Care. Dr. Hinckley is currently a Board Member of Aphasia Access and the National Aphasia Association. She is Executive Director Emeritus of Voices of Hope for Aphasia. She is Project Lead for Project BRIDGE, formerly funded by two PCORI Engagement Awards and now supported by NSU. She is the author of two books, Narrative-Based Practice in Speech-Language Pathology, and What Is It Like to Have a Communication Impairment?  Simulations for Family, Friends, and Caregivers. She is an Editor for The Qualitative Report, and on the Editorial Board of Topics in Stroke Rehabilitation and Journal of Interactional Research in Communication Disorders.        In this episode you will:  Learn about the importance of including people with aphasia and clinicians in the research process to make the research better. Find out what stakeholder engaged research is and its importance in developing relevant evidence for clinical practice Hear how Project BRIDGE has enhanced stakeholder engagement in research related to aphasia. Be empowered to embrace your own expertise and the expertise of your clients and their family members. KS: Jackie, Welcome back to the Aphasia Access Conversations Podcast. I believe you were first interviewed on our podcast in 2016 – Episode #2! We now have over 86 episodes that are available! Who knew the series would have such staying power. It's really amazing! Thanks for joining me today. I'm really excited about this conversation with you and having our listeners hear about what you've been up to lately and how that is impacting our clinical practice and the people with aphasia that we work with. JH: Well, thank you, Katie, for the introduction, and thank you to you and Aphasia Access for the opportunity to be on this podcast. I'm really excited to talk about these issues and talk about them with you. KS: Well, let's dig in. So, today's topic is “everyone's an expert”. How does that relate to our clinical work and our research?  JH: Well, you know, Carl Rogers, the famous psychologist said that we are the best experts on ourselves. And I think that we all have that thought in our minds, but it really hits at the core of person-centeredness. An expert is someone with authoritative knowledge. So that has two parts, the authority and the knowledge. And an expert comes about when people agree that an individual has high performance or high knowledge in an area. I think that the idea of person-centered care in our clinical work is that we acknowledge that our clients are the best experts on themselves. And I think most of us who are practicing speech pathologists would certainly acknowledge that and agree with that. But in reality, in a normal clinical process, it's actually kind of hard to do. Because the clinician is, by definition, an expert, and has a certain degree of authority in the clinical interaction. So, for example, clinicians need to do an assessment and a diagnosis. And the client really can't self-diagnose, so there's an issue of authority and knowledge from the point of view of the clinician. But now that authority tends to seep into other areas like goal setting, where really the client needs to bring forward their own expertise about themselves. When we continue to exercise authority over what the goal should be,  and yet, evidence shows that collaborative goal setting like goal attainment scaling significantly improves not just the immediate outcomes of therapy, but also how active the client is after they are discharged home. So, there's a tension around expertise. It has to shift back and forth during the clinical process. And a lot of times, it starts with the clinician having a lot of authority, but we have to know how to give our client that authority about themselves. So, it's only in the last decade or so that the idea of who's an expert and person-centeredness really has been applied to research.  For example, if we think about a traditional research process, the researcher reads the literature and identifies the knowledge gap comes up with the experiment or whatever study that can contribute to that gap. And the researcher determines the design, the method, the measurement, does the research, publishes it and gets it out in a way that the researcher basically is crossing their fingers is going to have the impact that they hoped for. The problem is that it this ignores who is going to be affected by the research. So, aphasia in, our specialty in our world here, is, is always existing in persons. It's not something that we can be that we can study in a petri dish. So anytime we do research that has to do with aphasia, we need to be acutely aware that we're creating knowledge that is going to actually affect somebody's life. And so maybe this knowledge is going to affect how the aphasia is assessed or treated, or what we do to support people with aphasia, but whatever it is, it's the lives of people with aphasia that are being affected by this research.  So, you know, let's step back a minute. And let's say I invented some new kitchen gadget, or a shoe or something, right. So. I'm the researcher of this new gadget. If I want to be successful in selling the product and having the product being used, I would have incorporated the views of people who might use it by trying out the products way before I ever try manufacturing and selling it because I need that feedback. I need to know if there are potential customers out there and whether they're actually going to use it.  And the same thing really applies to research. So, if I'm a researcher and I create a new research product (a.k.a = knowledge, or study to create knowledge). If I create some research product, but I'm not an expert user of that knowledge, in other words I'm a researcher who doesn't do assessments every day or treatment every day, then I run the very great risk that I'm creating a product that can't quite be used by the people was originally intended for. If we really embraced person-centeredness in research, then we would start by thinking about who are the people who are going to end up being affected by this research product or this research outcome. And we would incorporate people living with aphasia, and also clinicians into our research, and that would make the research better. KS: Powerful stuff! I remember the Disability Rights initiative using a slogan, “Nothing about us without us.” JH: Yes, that is a great slogan that has been around for a while. And that definitely reflects the idea of person-centeredness. And I think we need to remember that slogan and everything we do, whether it's our clinical practice, but also in our research. And that's a little bit of a new way of thinking about research. So, research is not just about the people with aphasia, sometimes it is, but a lot of times it's also about what are the best practices in clinical activities. So, we need to include both people with aphasia, their families, clinicians, maybe policymakers, other people who are really the stakeholders who are affected by the research products that we make, and they need to be involved in planning and doing the research and saying what kind of research would be most helpful. KS: I'm thinking a lot about researchers out there, Jackie, you and I included. We have clinical experience. So maybe they have a good idea of what clinicians need to know from research.  JH: You know, I have heard this from some people saying, “Well, I've been a clinician, so I know.” And maybe that's true. I think that people like you and I, who have been spent a good amount of time being clinicians in our past, probably are ahead of the game. In a sense, we might have a better sense of what we don't know, right? Because we've been out there doing it. But I will, in my opinion, I think researchers who aren't actively out in clinical settings, and they mostly aren't, still aren't quite totally up to date with the current challenges that are being faced by people. Anthony Bourdain, the celebrity chef said, “Just because I like sushi doesn't mean I can make sushi.” So, I think we may think that…but if we're not right in the thick of it, we may not know as much as we think. And we need to bring in the experts who actually do know what it's like to do that daily clinical work. KS: Point well taken. This leads us to the idea of stakeholder-engaged research. What is it? JH: The term stakeholder engaged research is an umbrella term. It covers a lot of different approaches to the idea of bringing in individuals who are going to be affected by the research to actually help can plan, conduct, and disseminate the research. So, there are various ways that stakeholders can be involved in research. They could be consultants, or they could be co-researchers, and full collaborators. In the case of a co-researcher, they help come up with research questions, help design the research, pick the outcome measure, help with data analysis, or interpretation, and even contribute to dissemination of the research results. We have found that people, family members, clinicians, other stakeholders, and people with aphasia can participate it fully as collaborators in all of these things if they so choose. KS: Amazing. I know there are a few examples of this kind of research in Ireland. For example, Ruth McMenamin …. and also, in Denmark Jytte Isaksen is doing interesting work, and of course there is Ciara Shiggins in Australia….what about in the US? JH: Yeah, so in other places, like in Europe, as you say, in Australia, I, you know, I think they've been a little ahead of the United States in terms of understanding that they need to bring in the people who are affected by research into the actual conducting of research. And that also brings up the point that I said, stakeholder engaged research is an umbrella term. There are many different terms and in some other countries, they also use different terms for this. But I'm using stakeholder engaged research here, because as you point out, it really is the term that's coming to the forefront here in the United States. So, in the United States, and in our all of our ASHA journals, we unfortunately have very few examples of stakeholder engaged research, where clients and family members are fully engaged collaborators are involved. There's only a handful of studies. So, it hasn't been a widely used approach in our field yet, but I think it's growing quickly. KS: What makes you think it will grow quickly? JH: There are three broad reasons why I think this is changing fast. First, I think the idea that people who are being affected by something – whether it be a policy, regulation, legislation – is taking a broader hold in certain areas of our lives. For example, in academics where we have student-centered learning. Second, research funding agencies in the United States are starting to value, and therefore reward with funding, research projects in which stakeholders play an important role and make a substantial contribution to the research project. The most important landmark in terms of funding agencies in the United States is the creation of the Patient-Centered Outcomes Research Institute, called PCORI. It was created as part of the Affordable Care Act in 2010 and it was charged with funding comparative effectiveness research – in other words, research that would help patients and clinicians what is the best treatment for them. Their slogan is “Research Done Differently”, and I think that captures that the research they are producing is not at all the kind of traditional research that we mentioned earlier. PCORI is funding all kinds of health research across many disciplines in innovative ways. This is really changing the landscape of research and research funding, because other funding agencies are starting to follow their lead. The third reason why I think stakeholder-engaged research will grow quickly in our field is the experience we've had with Project BRIDGE. KS: I've been a Regional Coordinator and also a member of a few research teams for Project BRIDGE. Honestly, it's been a gamechanger for me in how I think about approaching research. Can you tell us about how Project BRIDGE got started? JH: Sure. So, 10 years ago, I was at a conference called the Clinical Aphasiology Conference. And for anyone who's not familiar with that conference, until the last couple of years, the only people who could attend the conference were people who submitted presentations. So, this means the conference in that sense rather exclusive, and that the audience, the people who are present at the conference, were really only researchers. So, 10 years ago, I was at this conference, listening to three days of presentations, all about aphasia treatment and I suddenly realized that we're all researchers talking to other researchers about aphasia treatment, but no one at the conference was either using the treatment as a clinician or receiving the treatment as a client. So, I said to some of the folks at the meeting, “There should be some people with aphasia at this conference. We're talking about their treatment.” And the response I got 10 years ago was, “Well, they don't really belong here.” The timing of that was one year after PCORI, became really active and started funding initiatives.  Around the same time, we had done a project with the Sarasota Aphasia Community Group, which is a fabulous group, if anyone needs a referral in that area. They run themselves. The group is really great. We asked their members to come up with ideas about what research they think would be important. We talked to them about research, and we set them off. So, they were off on their own and we did not interfere with this. They had their own group meetings and came up with the research ideas. So, they came up with 22 ideas.  Now most of their research, and by the way, these were really good questions. And most of them, you know, were formulated pretty close to how we would normally formulate research questions. I mean, they did a fabulous job with very little information about research. Most of their research questions were about the best treatment for different kinds of language issues. For example, “What's the best treatment for being able to produce sentences?” But then they came up with some really special questions that I don't think that you or I even despite all of our clinical experience, and our research experience, I'm not sure we would come up with these questions.  For example, they wanted to know, “How can the speech pathologist engage the person with aphasia, not just do rote exercises, but rather connect with the aphasic as a personality, tailor the therapy to the individual needs?” KS: Wow, that's mind blowing. And that's 10 years ago, right?  JH: Yeah, yeah, maybe even more than that. And by the way, I said aphasic. I'm reading what they wrote, so I just wanted to let everyone know that those are their words. Another question they came up with was, “What is the effect on the person with aphasia if they do not like their speech pathologist? or ‘The speech pathologist doesn't understand the patient's needs or doesn't customize the therapy towards them?'” Wow. I think as clinicians, we probably know, in our hearts that when we don't have a good match in terms the rapport between the clinician and client, it probably doesn't go that well. It's not the best outcome. We all know this. But we don't know very much about it from a research point of view. And then another question they came up with was “What makes a speech pathologist excellent?” These are from their point of view. It was just people with aphasia and family members coming up with these questions. KS: Wow, well I'm certain that I wouldn't be able to come up with those types of questions. They are so meaningful and important. They really get right down to what's important, don't they? JH: Yeah. I'm really pleased that we were able to publish that paper with the founders of the Sarasota Aphasia Community Group. They were co-authors. They were equal collaborators with us in the project. That was published in 2014.  And then two years later, in 2016, we submitted a proposal to PCORI, when I was the Executive Director of Voices of Hope for Aphasia. And although that first proposal was not funded, we got great feedback. When I read the feedback, I thought, you know, if we make this actually a little bit bigger, maybe it's going to be successful, which is not always the way you go. But we partnered with the University of South Florida. So, it was Voices of Hope for Aphasia and University of South Florida. And that was funded, and that proposal created Project BRIDGE.  The first two years of funding allowed us to create a working conference. The goal was to bring together people with aphasia, family members, clinicians, and researchers to form collaborative research teams. One challenge with this kind of work and you know, it's this is not just in the world of aphasia, this is any health domain that uses this kind of stakeholder engaged research. So, one challenge is that researchers know about how to do research but other people who aren't researchers don't know so much about research. On the other hand, researchers are not experts on daily clinical processes, nor are they experts on living with aphasia. So, we created some video trainings, and some of them were for people with aphasia and family members to learn more about the research process, and some were for researchers about communication supports role dynamics, and plain language. Because, you know, most researchers have never been trained in doing this kind of collaborative research. So that conference was held in October 2018. And after a two-day meeting, 11 research teams were formed. And you were there, Katie. KS: Yes! Project BRIDGE was a career changing experience for me. I had invited two of our Lansing Area Aphasia Support Group members, Chris and Ruby, to join me, and we flew down to Florida together. I think from that beginning of travelling together to a conference set a stage for something different. Actually, Chris's sister, who lived in Florida joined us at the conference too. None of us really knew what to expect, but from the very beginning, we all knew this was different. At the conference, I remember just having my mind blown that there were over 100 people attending the conference- many who had aphasia or were family members whose lives were impacted by aphasia. One of my favorite parts was when we were in our teams, I had a team about storytelling and aphasia, and everyone was brainstorming on research questions. The training, the collaboration, the energy, it was really impactful. I'd love for you to tell our listeners more about Project BRIDGE. JH: So, after that conference, we were very happy that these research teams were formed and there was so much energy. And I want to say that, you know, from the very beginning, before we even got funding, we had an advisory team that was made up of people with aphasia, families, clinicians, and researchers. And so, after the conference and a little bit of follow up with our teams. The whole advisory team was so excited, and we there was so much momentum, and we knew we wanted to keep Project BRIDGE going.  So, we applied for a second round of funding from PCORI. And with the second round of funding, we created what we call a research incubator. And we were able to create four regional centers around the United States because we knew there are many people who wanted to participate, but who cannot travel across country to a conference. So, we started Project BRIDGE as a research incubator in January 2020. Our mission was to train 48 people with aphasia, family members, clinicians, and researchers on stakeholder engaged research and get them connected to a collaborative multistakeholder research team. Katie, you are one of the regional coordinators in Michigan yourself for the Midwest, so you know how busy we got! KS: Oh yes, busy is an understatement. Suma Devanga from Western Michigan University and I were the Midwest Bridge Regional Coordinators. We had so much interest we just kept meeting with various stakeholders, holding trainings, connecting people with research teams. Definitely Project BRIDGE was the place to be!  JH: All the regional centers were very busy. At the end of two years, we had three times as many people sign up to participate than we planned, and we trained 25% more people than we planned. Many more stakeholder-engaged research teams have been formed, and they're studying topics like the effects of yoga on aphasia. The yoga team actually started in the original 2018 conference. And, you know, check it out, maybe we can share some links to a couple of their publications, because it's a very productive team. KS: Absolutely , we'll put we'll put the links to that and some of the other things you've mentioned in the show notes.  JH: Great. Another team that has been influenced by Project BRIDGE is aphasia games for health. There's more than one team now working on mental health interventions for people with aphasia. We also have a couple of teams working on different aspects of friendship and aphasia. One team is a collaborative team working on how to run aphasia groups. I mean, isn't that great? Get the people with aphasia to run a study on the best way to run the aphasia groups, right? It makes total sense.  We've got lots of teams working, and we've had several different presentations at various conferences. And, you know, please stay tuned in the coming months and, and years, because more and more the work will get to a point where it'll be out in different publications.  When I look back at the work that we did with the Sarasota Aphasia Group, and the questions that they came up with, I'm so overjoyed that many more of them are now being addressed because people with aphasia, care partners, clinicians are being involved in not just coming up with the questions but planning and actually doing the research. KS: Powerful stuff! This is all very exciting. But there must be some challenges…  JH: Definitely, there's definitely challenges. First of all, you know, most researchers who are active today have not been trained in this kind of research. They were not trained in their doctoral program, to sit down with people who have expertise in a completely different area. They may have been trained to collaborate with people who are more or less like them. But that is a very different game. So, one thing that I think we'd like to do in the future is help foster the incorporation of the skills needed to do this kind of research into doctoral training programs. When we talk to researchers who have gotten into this, like you. We find that this is a recommendation that many people come up with. Another challenge of this kind of work is that it takes more time. It is time consuming. It takes time to involve people who come from a different background. And it doesn't matter if they are people with aphasia, a community partner, whoever they are, when they have a different background, then an academic researcher, that's going to take more time, and it's really, truly an investment. That is an issue for this kind of work. Another challenge or risk is as there are more incentives for in involving stakeholders of different types into the research process, there's always a risk of tokenism. So, if that starts becoming rewarded in some way, like through funding, then there's a risk that, you know, stakeholders are up serving on advisory boards, so it looks like they're involved, but they're not really, truly collaborators or really involved. So that is a risk I think that we're going to run, especially in the future.  But you know, honestly, I think that's a risk that we run in our clinical work, too. Sometimes we don't mean to be to be tokenistic. But I think when we ask our clients a general question, like, “What would you like to work on in therapy?” You know, our heart is there, we want to involve the client. But that's a question that the client is not really prepared to answer in that form. Most of our clients, probably, they never been in therapy, they don't know what therapy is in the first place. They don't even know how to start thinking about that question. If we don't take extra steps to seek out their perspective, and what's important to them, that that's a little bit tokenism too. You know, we don't mean it to be, but it really kind of is, I think. We need to ask specific questions; we need to use tools that we have. For example, Aphasia Access now has the Life Interests and Values cards, which is a fabulous way of getting the idea of clients' priorities for therapy, in an aphasia friendly way. I think the other thing for clinicians for our clinical work is when we do ask questions of our clients, and they give us the answer, I think we have to do a better job at taking them at their word. Because I think sometimes, if the answer is not quite what we think it should be, or we're a little surprised by the answer, we're very likely to attribute insight, problem solving issues, motivation, issues, whatever it is, into that client's response, when perhaps, that that is their answer for them. And you know, they are the experts on themselves.   KS: Yes, that's such great perspective and food for thought. I think we really need to listen and embrace what our clients put forth with ideas for how to work on goal areas and be open to receiving the goals and the ideas that they that they have. Even if it takes us a little off road from where we typically go. How can we help them explore and develop and operationalize their ideas? And I think it is challenging, it's new territory for us as clinicians and research but I think once we're open to this, I mean, honestly, sky's the limit. And the cool thing is that we as researchers get to learn and grow alongside our clients as well. Jackie, this has been such a thoughtful and great conversation. The time has just flown by. But as we wrap up today, do you have any final thoughts? JH: Well, you know, a lot of times we hear people say, “I'm no expert”, and Project BRIDGE has really taught me and showed all of us involved I think that a few things. Clinicians might not feel like experts around researchers, but they are experts about what they do and the clinical process. People with aphasia and care partners probably don't feel they don't feel like experts around researchers or clinicians, but in point of fact they are experts about themselves and their own lives and, and what's important, and what we can best do to fit into those priorities. So, I think that we've learned from Project BRIDGE that a researcher or a clinician who exudes cultural humility. You know, we might not feel like experts in front of clinicians or people with aphasia and care partners. So, I think we need to acknowledge, we're all experts on ourselves and our little corner of the world, what we do all day, and other people are experts on other things. And hopefully, we don't impose that onto other people and that we can just collaborate with each other.  When some kind of research is going on, that might potentially affect something that a clinician routinely does, or how a person with aphasia is living, or the kind of therapy they're going to get, etc. We need to be willing to step up and contribute to a collaborative team. You know, probably not every kind of research in the world is a perfect fit for this kind of stakeholder engaged research. But a lot of what we do in aphasia, I think, and especially things that are important to members of Aphasia Access, would be better, more effective and more efficiently done with a collaborative team. We need everyone's expertise to change things for the better. When we do this kind of collaborative research, it speeds up how fast the research gets used in practice settings. So, it benefits people faster, because it's more effective. So, we need people to be aware of this and get involved. Project BRIDGE, fortunately, is now supported by Nova Southeastern University. So, it's not going away just because the funding ended in this year. And we are continuing to help people, whether they be researchers, clinicians, people with communication disabilities, or family members to get going on stakeholder engaged research. We still have our video trainings, And, coming soon, we'll be offering customized research team trainings. I invite everyone to please check out our website, www.projectbridge.online  You can sign up for our newsletter and we post various resources that are helpful tools. KS: Thanks, Jackie. I'll be sure to put all of your contact information and Project BRIDGE as well as some articles on stakeholder engaged research in the show notes. Thank you, Jackie. you've given us lots of food for thought and inspiration for action during the conversation. But I also just want to say, thank you for your forward thinking and helping us in the world of aphasia get on this stakeholder engaged research train. Project BRIDGE is a great conduit for who knows what's to come. JH: Well, thank you, Katie. And, and thanks again, for this opportunity to talk about this effort. You know, there's so many people around the United States who are participating in this, I could have spent the whole podcast just probably listing their names, but that might not be too engaging. KS: It's a big posse, Project BRIDGE! JH: It's very big. Broadly, I definitely want to acknowledge them, even though I can't acknowledge everyone by name. Everyone's doing such exciting work and people are finding their own paths through this, which is what we need. I didn't say it earlier, but the idea of incorporating people living with communication disabilities into the research really springs out of my own personal experience with disability and in life. And it's such a privilege for me to meld my personal experience into things that hopefully will help others too. So, thank you very much. On behalf of Aphasia Access, we thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org If you have an idea for a future podcast topic email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.   Resources Referenced in Episode Project BRIDGE www.projectbridge.online  Email: flaaphasia@gmail.com Twitter @ProjectBridge3 Facebook @bridgeresearch  Instagram @projectbridge2  Dr. Jackie Hinckley - Jh988@nova.edu   PCORI Engagement Resources: https://www.pcori.org/engagement/engagement-resources  Project BRIDGE (and resources) on PCORI: https://www.pcori.org/research-results/2020/building-bigger-bridge-research-incubator-network-pcor-communication-disabilities  Project BRIDGE Published Abstract: https://www.frontiersin.org/10.3389/conf.fnhum.2019.01.00030/event_abstract    Examples of Stakeholder Engaged Research Project with Sarasota Aphasia Community Group:  https://www.tandfonline.com/doi/full/10.3109/09638288.2013.829528  Team Yoga - 1: https://pubs.asha.org/doi/10.1044/2020_PERSP-20-00028  Team Yoga  - 2: https://pubmed.ncbi.nlm.nih.gov/34797684/  Aphasia Games for Health: https://www.aphasiagamesforhealth.com/    Canadian Institutes of Health Research Patient Engagement in Research Resources https://cihr-irsc.gc.ca/e/51916.html  Ethics in Patient Involvement: Hersh, Israel, & Shiggins 2021 https://www.tandfonline.com/doi/full/10.1080/02687038.2021.1896870    Goal Setting Resources for Aphasia Live Interests Values Cards (LIV! Cards) https://www.aphasiaaccess.org/livcards/ 

Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner, a faculty member in the department of Communication Sciences and Disorders at the University of Wisconsin – Eau Claire. Today, I'm joined by Becky Khayum.  Biosketch: Becky is a speech-language pathologist and specializes in providing person-centered care for people living with different dementia syndromes. Over the past 15 years, she has held leadership positions in rehabilitation centers, assisted living communities, memory care communities and home health environments. In 2009, Becky co-founded MemoryCare Corporation, a therapy company specializing in providing care for families coping with dementia. Becky currently serves as the President of MemoryCare. In 2020, she co-founded Cognitive Concierge, which provides digital services and programs for people living with cognitive challenges. She has been involved in research initiatives in Primary Progressive Aphasia at the Northwestern Mesulam Center for Cognitive Neurology & Alzheimer's Disease. Becky speaks nationally to train healthcare providers and families on how to creatively apply the life participation approach for people living with dementia. Take aways: Learn about applications of the LPAA framework to individuals with dementias, including primary progressive aphasia (PPA).  Learn about tools you can use to implement LPAA interventions with individuals with Alzheimer's disease and PPA.  Learn about several key authors/researchers/clinicians in the areas of dementia interventions that should serve as starting points for learning about person-centered care in dementias.  Learn how to frame person-centered, LPAA goals for persons with dementias, including PPA.  Learn how to document so that LPAA interventions are reimbursable for Medicare and other insurance providers.  Interview Transcript:  Jerry Hoepner: Hi Becky so glad to have you with me today and really looking forward to this conversation. Becky Khayum: Well, thanks for having me Jerry I'm looking forward as well to our discussion. Jerry Hoepner: You know, I was mentioning to our listeners that if they weren't familiar with your work, they really need to explore your work, because there's just so many important connections about the life participation approach applied to individuals with progressive diseases like dementias and so forth. We know that, at least in the Aphasia Access circles you're well known for your person-centered life participation approach for individuals with dementia, including the individuals with primary progressive aphasia. Can you share just a little bit about how you got connected with Aphasia Access and the life participation approach? Becky Khayum: So, so I'm sure others have the same story, but I was going about my ordinary day and I get a call from Audrey Holland and she's so excited and says there is this summit, and you have to go and begins to tell me all about it, and you know, of course, said Aphasia Access you know this is new and I had you know, the summit is new and I had actually hadn't heard of Aphasia Access at that point, which was surprising considering I tried to you know base my clinical work on person centered care and I was so sad because I actually couldn't make of the first [Aphasia Access Leadership] Summit but of course, I went to the Aphasia Access website at that point and signed up, and it was startling and I was so delighted because, “Oh, my goodness, everything that I am trying to think about as the clinician and train other you know speech language pathologist on is completely captured and this one group with so many leaders in our field,” so that is how I first got connected. Jerry Hoepner: Oh that's fantastic I didn't know that story but I kind of figured that was one of the connections, I know that I had spoken to Audrey I don't know if it was that the first or the second Aphasia Access Leadership Summit and she just spoke so she raved about you and the great work that you were doing and was just so excited that you were a part of the organization so that's fantastic and like you said a lot of people have that connection. So it was fabulous that a few weeks back to have a conversation with her again on a podcast and recognize her lifetime of just brilliant work so she's been a mentor and an encourager for so many of us so fantastic. Becky Khayum: Absolutely 100% yep. Jerry Hoepner: Well, you found a perfect fit and a perfect home in Aphasia Access and I, as someone who loves working with individuals with aphasia my passion is really with people with cognitive disorders, with traumatic brain injuries and so forth, as well, and I just think the life participation approach has so many applications that are much broader than aphasia and certainly we're excited to talk with you today about those applications as they're made to individuals with dementia and including your work on primary progressive aphasia as well. Becky Khayum: sure. Jerry Hoepner: Absolutely you you've done some great interdisciplinary work with a team of professionals about dementias I'm really interested, I have been reading your work on the care D model and just want to get your thoughts on the relevance of that model to dementia care and maybe talk us through some of the different types of dementia syndromes and their typical symptoms and the way that they present themselves I guess. Becky Khayum: Sorry, Sir absolutely so I'm during my you know collaboration in research at the Northwest Western Mesulaum Center for Cognitive Neurology and Alzheimer's disease, I had some amazing mentors there who developed this care pathway model: Darby Morhardt, you know Sandy Weintraub, Dr. Mesulaum, and Emily Rogalski. Really learned everything there that from them that I now know about the different types of dementia syndromes you know, and so they developed the care pathway model, you know for people living with dementia and really the model highlights that there are different types of dementia syndromes with very specific symptoms depending on where that neurodegenerative disease starts in the brain and it was really trying to promote awareness that you know Alzheimer's dementia, with the memory loss isn't the only type of dementia syndrome and therefore there really needs to be tailored care and interventions for the different types of dementia syndromes and really, how do you adapt those interventions over time. How, you know just that huge need for psychosocial you know, support and so anyways that's the basis for the care pathway model so they you know in that paper they describe. Some of the different dimension syndromes that have very distinct symptoms, so of course we know you know Alzheimer's dementia, with the hallmark you know deficit of that short term episodic memory loss that you first see but then, you know you may have language reading and writing symptoms that first appear and get worse over time and, as in primary progressive aphasia. Another example would be for those neurodegenerative diseases that more cause deficits in behavior and personality changes, as in the behavioral variant of frontal temporal dementia and then also another syndrome, that I don't think is as well known, is where the neurodegenerative disease starts in the occipital lobes so you have you know vision difficulties that's caused by you know cortical deficit and so that is posterior cortical atrophy so you know this, the care pathway model then describes and I know we'll talk about more of this podcast. Okay, how do you can tailor the interventions given those different types of symptoms right? Jerry Hoepner: Right and that's a big part of that that care model right that tailoring not only to the type of dementia, but to the individual that you're working with, and as I read the article I think the word tailor comes up about 100 times. Becky Khayum: Absolutely right and that's such a good point it's not just to the symptoms. It is to that actual individual and the way their symptoms impact their daily life so completely corresponding with the LIFE participation approach yeah. Jerry Hoepner: Absolutely, well that's actually a really good lead into my next question. We have a lot of information out there about the LIFE participation approach for aphasia but are there differences in the way that an LP might apply the LIFE participation approach for people living with a progressive condition. Becky Khayum: Sure, absolutely you know, so I think in terms of how you might evaluate and write goals for someone with a progressive condition. The overall philosophy, with the LIFE participation approach you know, in my experience that doesn't change too much you know you're really doing that motivational interview you're learning. How their whether it's aphasia or memory loss or behavior you know behavioral changes. How was that preventing them from participating in the activities and conversations, they want to participate in, so I feel like that that part isn't you know. Really distinctly different. What is different? One thing is in terms of how people develop these symptoms, over time, so it's obviously for many people very gradual. That their first noticing the symptoms and then they're getting worse over time, so they do have the ability to already developed some different compensatory strategies that they find or helpful too. Their care partners also find that are helpful to manage some of these symptoms so compared to having a stroke, where it's just suddenly everything it has changed so that's important to consider as you're forming your goals, but what goes along with, that is, the risk of social withdrawal, so you know it's kind of the opposite usually have someone with a stroke, you know, we have all this social withdrawal and in the beginning, but then as they're going. Through the rehabilitation process and then long term the goal is to reintegrate them, you know into the Community with those social interactions with different dimensions syndromes it's quite the opposite, you know at first there perhaps staying pretty connected and then, as things get worse. Then we're starting to see that withdrawal So how do we help to prevent that? Um I think another difference in terms of therapy is that you really need to anticipate that they are going to progress in their symptoms. And how do we anticipate those future needs, so we may or you know actually need to introduce strategies, especially compensatory strategies? Before they're actually needed and then also knowing over time that we have to be realistic in the goals that we're setting and knowing. That you know, increasing care partners support, increasing the use of visual aids and whatnot those will likely be needed for them to meet that life participation goal. The goal should not be getting them more independent, it should be understanding that they're going to need some more support so Those are some of the key differences, I think, with a progressive condition. Jerry Hoepner: And I think that makes sense, and I know you talk a lot in your work, about the importance of counseling and education, as you know, to let people know not just the individual with dementia, or whatever the progressive condition is, but their partners that are care partners as well. Becky Khayum: Right absolutely. Jerry Hoepner: You know, as you as you think about those differences and I, like the way that you said from your standpoint it's not a whole lot different, right? I know that you've written a little bit about the focus on debilitation versus rehabilitation and I'm thinking about how that might apply more broadly to even stroke-based aphasia right. So, I know Michelle Bourgeois writes about the flip the rehab model, and it seems like a lot of those principles of you know, focusing on the positives and keeping people engaged are really pretty shared I don't know if you have thoughts about that. Becky Khayum: I know, and certainly with the flip the rehab model, you know, Dr. Bourgeois has been my mentor you know I remember first attending one of her talks at ASA and of course Audrey had already told me, you know you need to connect with Michelle and I was just so energized you know and it completely changed the way that I thought about assessment in terms of really yes flipping that around and how that goes right along with the from you know live participation model because we're having more of a client directed assessment and goal formation, rather than yeah the clinician doing that yeah absolutely. Jerry Hoepner: Well you're really natural with transitions between questions because I was just gonna talk to a little bit about goal setting, I know that you've written about this in a couple of really nice papers and one of the things I value about them is that they are so practical and so easy to digest for everyday clinicians and all of us, to be honest and you wrote a paper in 2015 with me Emily Rogalski and then he wrote another in 2015 with Rachel Wynn and talked a lot about goals for individuals with dementia or primary progressive aphasia from an LPAA standpoint and just really interested in your suggestions and thoughts about that goal writing process. Becky Khayum: Oh, absolutely and I, we certainly already touched upon this and the last question where you know I tell us if you aren't using a person-centered kind of the flip the rehab model assessment. Overly for anyone with any type of cognitive deficit, but particularly for those living with dementia syndrome. If you're not doing the right type of assessment then you're not going to be able to formulate the right types of life participation goals. So, certainly, I think, in some graduate training and externship you know, say, a fly training I think some clinicians are very used to having to give a standardized test and a score and certainly that's where Dr. Bourgeois really says well that should come last you know really develop. You know, what are their needs? What are their goals? and then investigate what specific impairments. Auditory comprehension memory loss might be impacting their ability to meet those goals. So, the first you know suggestion is it's that purpose product mismatch if you're diagnosing someone that's great you know use your impairment, a standardized test, but you will not be able to form a life participation goal.  If you're using an impairment based standardized tests and then the other barrier, I think that we've talked about recently on an Aphasia Access panel on documentation. Was the electronic health record systems are designed for it and impairment based goal writing? I mean you just click, click, click. Okay, they have aphasia well great here's generative naming you know and whatnot if they have memory loss will are they oriented, and so it leads clinicians to automatically form and pyramid vehicles so that's where we'll talk, maybe. Later in the podcast about how can you secure reimbursement, you know for people living with a progressive condition, but as far as goal writing you know. Certainly, again very similar to anyone with TBI or stroke and just aphasia what are their goals, how did they want to increase participation in life activities? Writing out those goals with them, and a lot of times I use, who are the people you want to talk with you know, following a from where are the environments that you want to talk with people. Or that you can't participate in because of your memory loss, because your behavioral or visual deficits. And then, what are you know what specific topics or activities, you know, do you want to talk about our participate in so.  Really, I use those prompts to help write the goals and then the only real difference than is making sure that the level of care partners support and the accuracy and the use of aids and supports that it's realistic that we're not trying to say 90% accurate in Japan it so that would be the biggest tip about goal writing you gotta be realistic, especially over time. Jerry Hoepner: Absolutely, and I appreciate carrying that through that idea of the flip the rehab model into the goal writing in I know you're a big proponent of motivational interviewing as am I, and one of the things that William Miller always says is don't ever do an impairment based assessment on your first interaction with someone and that's what we in so many times that's what people do right they begin with that and it's like. The biggest killer of relationship build building that you could you know, and when you're trying to find out what does this person want and need to do and what kinds of things will help support that yeah so beginning with those questions as a better place, then. Becky Khayum: Yes, for sure Jerry Hoepner: yeah absolutely. So, how would you apply the life participation approach for someone living in long term care with behavioral challenges things like that? Becky Khayum: Certainly, yeah and I think that's a tough one, you know, and certainly one where you absolutely need collaboration with occupational therapists, social workers, counselors you know that are also involved in the individuals care and certainly also you, it is sometimes difficult to directly in you know intervene with the person, you know, in terms of this is an intro you know intervention that directly changes the person in their behaviors. It's really more we're changing the environment around them and we're educating staff members in more you know memory care communities or Assisted Living and family members to provide the environmental supports and communication strategies visual supports and certainly that's difficult, you know. Dr. Natalie Douglas, as you know, done a lot of research on caregiver support in long term care. And so that's certainly another topic, but yeah for someone with behavioral challenges in terms of utilizing the life participation approach I think Jennifer Brush. You know just another lady, you know expert in long term care, using the Montessori approach um she always says, you know a lot of times whether it's Alzheimer's dementia or behavioral difficulties. People have a lack of a role, you know, and in some you know you have to get to the root of what's causing the behavioral challenges but oftentimes they don't feel like they have a role anymore, and a purpose in life, so I always like to start there and then also certainly do the environmental assessments, working with OT. Really training family members and staff members keep a behavior log you know let's actually see what the triggers might be so we can better think about interventions. But then again holistically will what sorts of activities and passions did they have prior to coming to the long term care community, and how can we figure out a way to modify that activity and if we allow them to participate in that? And you know, certainly, we often will see a reduction and those behaviors we don't need pharmacological management, which is so often what you know places do and just a quick example of that you know one. I met a professor, who had just been moved to a memory care community separated from his wife and was just so confused about why he was there, and you know incredibly respected expert in in so many different areas, people and so he was hitting you know people at the front desk asking to call his wife, you know every five minutes. And so, when I came in, you know they said always an artist we've been trying to get them involved in art activities and whatnot but he doesn't want to. Um so talking with the family, you know, I was able to quickly learn know people address them is Dr., you know, a professor, first of all, second of all he realizes how his art isn't the same and the quality of what he used to do so, he doesn't want to participate in that he loves to teach. That's what he wants to do. And so we were able to create a PowerPoint with him on topics art and travel that he loved to talk about, and you know he had memory loss. Actually, Alzheimer's dementia with behavioral you know challenges related to this lack of a role and we had signs, you know that Professor so and so is our guest lecturer today, we had a letter inviting him to be the guest lecturer at the community and then he gave his lecture I think three days a week, and so it didn't completely solve all of the challenges that came up but it drastically reduced you know his behavioral challenges, because we use that light participation approach for him. Jerry Hoepner: I love that story for a few reasons, one that you know they identified that he was an artist, but that he went beyond that recognizing that. That was even a challenge for him, because it was not the same art that he was able to produce before and just reengaging him in a meaningful way giving him purpose and that, like you said that role. That's the LIFE participation approach in terms of engaging in something meaningful and scaffolding, the environment and the people around him so that could be accomplished yeah that's fantastic. Becky Khayum: Yes, absolutely. Jerry Hoepner: Terrific, I'm so glad you mentioned Jennifer Brushes name, too, because she and Natalie Douglas because they've contributed so much to that context. Becky Khayum: I learned so much from them. Jerry Hoepner: Absolutely yeah, yeah. Okay um so I know that one of the common things that comes up in discussions and Aphasia Access panels and when we're talking about return to group kinds of context is how a person with primary progressive aphasia might best participate in and aphasia Center and or a group over time, as we know that you know symptoms are going to continue to worsen and more cognitive challenges arise, and what are your thoughts on that and how to make that work. Becky Khayum: Yes, that that is certainly a tricky, tricky topic, you know, and again I think one that probably doesn't have one answer. Becky Khayum: In every person may be different, you know just talking about tailored approaches it's likely going to be the case in this situation. On the first question, you know will, should they should they participate in groups or centers that are predominantly made up of people living with stroke and aphasia. Knowing that they're going to get worse over time for some people, the psychological impact of that watching themselves get worse, you know, during the groups, you know people with PPA. Most tend to be very cognizant you know of their deficits of their predicament and so psychologically, how are they doing? And I've worked with some people who they don't they don't, mind you know they they're just so happy to be talking with other people who have aphasia and that social interaction is so meaningful to them that they don't really think too much about the fact that maybe they're getting a little you know worse over time, but that's different you know, certainly for everyone, others, you know, certainly will get very anxious. I think, from the beginning it's good to have a good relationship with their family members as well, and just having that talk, you know from the get go, you know we just want to be open with you, this is a group that's predominantly people living, you know with stroke and just aphasia. Just knowing with PPA you know conversation can get a little more challenging over time, it might be, you know emotionally difficult for them. If we ever find that we think that they're not enjoying the group or it's challenging for them, they don't seem to be getting. The social interaction out of it that they need, and maybe documenting that you know and kind of a systematic way over time being open with the family and saying we just don't think they're getting out of this, the meaning that they did before, but the critical thing is to have other programs or groups to refer them to so it's because that's the meaning that's behind the groups who want to continue that role for them, and so that's where, if you have a local aphasia center, day programs, or whatnot that may hopefully have activities and whatnot that are stimulating and then certainly with coven I think the number of virtual groups for just people living with PPA has really grown, I found and so it's allowed people to participate in an efficient group and I certainly in the ones that I lead, I found a broad range of people with different abilities and those who have more difficulties you know their care partners help jump in so you know those certainly there's no one answer to that, but those are just some. And lastly, I guess, I forgot to mention we're so great at thinking of different types of compensatory strategies and so certainly before. Making that decision, you know that Okay, they just can't participate in the group anymore trialing a lot of different interventions, you know that we might use with someone who has memory loss or whatnot I'm trying those first before we decide that maybe they're not the best fit. Jerry Hoepner: Right so as long as it's working keep going with it is what I'm hearing you say, but when that no longer becomes a viable option looking for other options, where they can participate, and where they have the scaffolding and support to do that. Becky Khayum: Yes, that's usually what I would typically recommend for this situation yeah. Jerry Hoepner: And one thing I'm thinking about the people with primary progressive aphasia that are tend to our groups here and also our aphasia camp that connection that's established for the care partners becomes really a close bond to so thinking about what the next step is for them, maybe. Becky Khayum: that's you know that's such a good point. In the other in the PPA chats that I run a lot of them, we have a whole separate breakout room just for care partners and yeah, there doesn't even need to be a facilitator in that room, I mean they I've been told, over and over again, the benefit that they get from just having a chance to connect with other care partners and I'm so glad you brought that up because I do think for them meeting with care partners of people who had stroke induced aphasia would probably not, and this is just me again my personal opinion, I don't think it would be very helpful because a lot of the discussion is about the fear as things get worse, not knowing what's down the road and then for those who are further down the road what they've learned what they've tried and sharing information about that so I'm so glad you brought that point up about care partner support yeah. Jerry Hoepner: yeah equally as important as those connections for the person with primary progressive aphasia for sure. I mean, what are the common threads that we've been talking about in this conversation, you know, are the things that you're engaging people with our real-life meaningful engagement figuring out creatively how to accomplish that, like the exam the example you gave of the teacher and so forth. I'm wondering if you can walk us through an example of applying life participation to someone with living with Alzheimer's dementia and how that might be a little bit different for someone who, at least initially starts with more of a language focus and PPA. Becky Khayum: Sorry sure yeah so again, you know with Alzheimer's dementia now we're thinking about with that memory loss the short-term memory loss. How, you know again we're going to identify an activity that's important to them so just give me one example of a woman who really love birdwatching and that was something that she said over and over again, you know I am would repetitively asked her spouse, you know. I want to go look at the birds because it's been something that they've done for a long time, but just forgetting that they've already just earlier in the day, maybe gone and seen the birds, you know and not knowing whether they're going to go do that next and then having difficulty telling others about the experience, because she didn't remember what they saw what verse she saw and whatnot. So, thinking about you know really documenting from her perspective, what she wants to do and it's mainly you know would love to see the birds would love to share that with others. And then from the communication partner standpoint, just as important, was interviewing them about what is their experience what are their frustrations, you know, and for them, it was these repetitive questions all the time figuring out how to talk about you know, allowing her to talk about birdwatching with other people, so they aren't dominating that whole conversation, you know that she can remember with you know with supports and do that herself. So, really, in that case it's again, you see a lot of Dr bourgeoise work, you know it versus thinking about Okay, how do we use visual aids to help her come up with more of a routine and schedule and the answers to her repetitive questions in a memory station and a memory wallet you know so in the hall, and we created a little memory station, you know with the dry eraser, it clearly has the dates and when they're you know going birdwatching that day, where if they're going in the backyard if they're going somewhere, but then, also in that memory station really having collecting pictures and experiences to put in a memory book also I love the bird watching walks where you can just stated, and put Okay, these are the birds, I saw today, this is where they were. And then being able to use those visual aids to communicate with others. Certainly, care partner, helping to take videos and pictures, you know so they can scroll through the phone and show others and then Lastly, you know for people who are more impaired, you know and would benefit from simple bird Montessori activities, you know, and so it might be bird matching and they have so many on Amazon, like so many neat bird large picture books and Bingo and matching cards and whatnot so really kind of maybe sorting feathers or whatnot you know there's so many different activities, you could do with birds and showing them videos online pretending like you're going bird watching online they have all these virtual bird feeders now, so I think again it's thinking about here's the memory loss here is what they and their care partner once for the school and then, using the appropriate supports and carrot partner training to get there. Jerry Hoepner: yeah, that's fantastic I, you know as you were talking through that I was just kind of anticipating thinking. You know, in some of the papers that you've written you talk about the use of photo stream and how easy, that is to flip through post photos, but that is just the kind of the antidote to you know the behavioral challenges that come about when someone isn't engaged in something meaningful. And in these are ways and you have such creative and practical ways to accomplish that like you said as a person is progressing, to be able to use the video resources that are out there to keep that person engaged. The same videos that I have my cat watch right? that's right same kind of thing like a rare bird at my birth feeder today, so that one occasionally, yeah I mean I just think that's so powerful and such a such a stark contrast to an approach, where you do decontextualize things that you know I  said I would get this in there at some point, you know the “throw out the memory books” paper that you wrote for the ASHA Leader and I just think as a mantra that's a pretty good mantra right throughout that. Becky Khayum: Throw out the workbooks. Jerry Hoepner: Excuse me that's what I meant, “throw out the workbooks” because right meaningful engagement is what's going to change that. So, I really just you know appreciate your perspective on that and I do encourage our readers to go to those resources that will have linked to the show notes. There are a couple of articles that really have some good, practical suggestions for exactly that kind of stuff so I'm excited for people to check that out. So, you said you wanted to return to this topic, a little bit earlier and I think I got off track, but is LPAA treatment for people with dementia reimbursed by Medicare and other insurances and, if so, how do you document that so that, how do you document status for someone who has a progressive disorder. Becky Khayum: Sure, sure, and I think this is one of the biggest barriers, you know in across the rehab settings you know whether it's outpatient or home health or in a sub-acute you know rehabilitation facility is the way the productivity, you know expectations, you know some places, you don't get paid for an evaluation, you know some in sub-acute care whatnot and so or it's you know, compared to the treatment portion they you know want you to do a very, very quick evaluation and then more focus on the treatment. And so, really, you have to think about how to get around some of these restrictions, you have to do a standardized tests, you only have this long to do the evaluation okay well how do we get around this you know so I think the first thought is that dispelling some myths, you know Medicare doesn't require a standardized test that's a myth most companies require that but they really don't they're looking for more what's in all the electronic health record systems and narrative so there's a whole section for a narrative where you can write that motivational interview what you discovered what their goals are where they're at right now and then. There, instead of using this standard, you know goals that they have that you just click you can create your own kind of gold bank with more LPAA  goals just done a template and just copy and paste those. So, if you had a bird watching you know goal, you could easily then insert okay gardening you know instead or cooking into that and so there is a way to cut and paste goals meaningful goals into the electronic health, you know evaluation. And if you then make those realistic goals and can show progress because you're not going to be able to show progress for that long you know for someone with PPA. Okay generative naming, you know I always say you know you're working on generative naming with animals well unless they're a veterinarian or a zookeeper. You know that that may, they may not make the most progress on that goal and that may not generalize to other contexts. Rather, if you're working on words related to birdwatching and they love that you know you can then document improvement, you know with script training and whatnot. So, I getting off topic, but you know so that's how you would write the goals you can show the progress on a standardized impairment based test, if you think about it, if someone with a progressive dementia just got the same score over time, that would actually indicate improvement because they should be getting worse over time. So, and certainly using more functional tests, like the CADL (Communication Activities of Daily Living), you know, like the ALA (Assessment for Living with Aphasia) also go a long way, you have to use a test, you have to use self-test go to those you know more functionally based test um so that the answer is absolutely Medicare other insurances. Certainly, some you know united signal, or some of those you do have to get preapproval or whatnot that that can be more challenging but Medicare, BlueCross, and many of those it's all about your documentation and knowing how to write that narrative and use that goal bank of functional goals, so, in short, yes. Absolutely, you can get reimbursement. Jerry Hoepner: So that I mean it all comes back to those goals and like I said before, you've got a couple of really good resources on goals and, as you were talking It made me think of the addition that you have on your goals in order to do whatever right that is having that in mind, is connecting the LPAA to the goal right that in order to do what I do whatever happens. Becky Khayum: yeah, yeah exactly what, if you have a goal and it doesn't have that at the end you know, in order to participate in conversations about what birdwatching you know leisure activities, exactly is that helps it to directly target that life participation activity yeah. Jerry Hoepner: It comes down to just documenting that right and knowing that you're not bound to any of those other specific impairment-based measures yeah agreed. Well Becky, this has been a fabulous conversation, and I hope we get to have more conversations, but just to close things out today you've talked about some really strong influences and mentors like Michelle Bourgeois and influences of Jennifer Brush and obviously Audrey and Natalie Douglas but are there any kind of go to resources that you want to let our listeners know would be a good place to start if they're thinking about LPAA with progressive conditions. Becky Khayum: yeah, no. That's such a good question and you know off the top of my head certainly any articles, you know that any of the people that you just mentioned. Their articles just contain a wealth of information, you know about everything that we've talked about today, but much more you know and examples of therapy. You know Ellen Hickey as well, has published a lot I also forgot to mention earlier, I think the counseling component, you know to Audrey's counseling book. Counseling for people with a progressive diagnosis is also very different than someone who may be getting better over time so having that training and counseling is also critical so any resources on counseling. Certainly, just knowing for people who come to you, and they may be, or just diagnosed with a dementia syndrome. Being aware of where accurate information is because, when they get onto the web they're doing a Google search they're joining a Facebook group for PPA, they're getting all their information from other care partners, perhaps are people living with PPA and so um yeah we recently, I've done, you know surveys and one of the top ones is Oh, you know is we want one place where we can go or at least a list of accurate places, so you know going to giving them the links to Alzheimer's disease centers like Northwestern where you know, on their website that's accurate information I think those are also go to resources in terms of disease education for families and at the same time providing counseling and helping to explain their diagnosis and in an aphasia friendly way that's also a problem you know that I see come up quite a bit yeah. Jerry Hoepner: yeah, that's a really fantastic point in a in a great way to round things out anything else that we missed or you want to add just before we close things out today. Becky Khayum: Right. No Jerry, I think you've been very comprehensive, you know in in the range of topics we talked about today and yeah I mean my last thoughts would be, you know any speech language pathologist or other health professional you know, listening to this podcast today now hopefully learned a little bit about taking this beautiful model, you know LPAA and how it is so transferable to different types of dementia syndromes and it's certainly with knowing that especially with Alzheimer's dementia, the prevalence is only getting higher every year of people living with these progressive conditions it's critical that our field really steps up and says we can treat help work with these individuals we're trying and then provide that the interventions that are based upon LPAA philosophy. So yes, thank you for having me. Jerry Hoepner: Wonderful, it's been really my pleasure just a fun conversation, again, I look forward to catching up with you at other conferences and so forth, so thank you again Becky and we'll close things out for today. Becky Khayum: sounds great Jerry thanks so much. Jerry Hoepner: On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access. Articles & Resources: Rogalski, E. J., & Khayum, B. (2018, July). A life participation approach to primary progressive aphasia intervention. In Seminars in speech and language (Vol. 39, No. 03, pp. 284-296). Thieme Medical Publishers. Morhardt, D., Weintraub, S., Khayum, B., Robinson, J., Medina, J., O'Hara, M., ... & Rogalski, E. J. (2015). The CARE pathway model for dementia: psychosocial and rehabilitative strategies for care in young-onset dementias. Psychiatric Clinics, 38(2), 333-352. Rogalski, E. J., Saxon, M., McKenna, H., Wieneke, C., Rademaker, A., Corden, M. E., ... & Khayum, B. (2016). Communication Bridge: A pilot feasibility study of Internet-based speech–language therapy for individuals with progressive aphasia. Alzheimer's & Dementia: Translational Research & Clinical Interventions, 2(4), 213-221. Rogalski, E., Roberts, A., Salley, E., Saxon, M., Fought, A., Esparza, M., ... & Rademaker, A. (2022). Communication Partner Engagement: A Relevant Factor for Functional Outcomes in Speech–Language Therapy for Aphasic Dementia. The Journals of Gerontology: Series B, 77(6), 1017-1025. Wynn, R., & Khayum, B. (2015, August). Developing personally relevant goals for people with moderate to severe dementia. In Seminars in Speech and Language (Vol. 36, No. 03, pp. 199-208). Thieme Medical Publishers. Khayum, B., & Rogalski, E. (2018). Toss the Workbooks! Choose treatment strategies for clients with dementia that address their specific life-participation goals. The ASHA Leader, 23(4), 40-42.