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  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    

  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

  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

In this week's episode, Dr Melissa Brunner (Liss, she/her), speaks about finding ways to safely help individuals post TBI access social media while maintaining autonomy and choice of the individual. Speech Pathology Australia acknowledge the Traditional Custodians of lands, seas and waters throughout Australia, and pay respect to Elders past, present and future. We recognise that the health and social and emotional wellbeing of Aboriginal and Torres Strait Islander peoples are grounded in continued connection to culture, country, language and community and acknowledge that sovereignty was never ceded. Resources: Contact Liss: melissa.brunner@sydney.edu.au eSafety commissioner: https://www.esafety.gov.au/ eSafety Guide to staying safe online: https://www.esafety.gov.au/kids/I-want-help-with/being-safe-online Cyberability - free training on how to stay scam safe after brain injury: http://www.cyberability.org.au/ social-ABI-lity - free training on how to use social media after brain injury: https://abi-communication-lab.sydney.edu.au/courses/social-ABI-lity/ Social Media and People With Traumatic Brain Injury: A Metasynthesis of Research Informing a Framework for Rehabilitation Clinical Practice, Policy, and Training https://doi.org/10.1044/2020_AJSLP-20-00211 *Email Liss for a copy* Did you know you can get transcripts from season 5 of Speak Up for free on the Learning Hub? Want a transcript from an earlier season? Email Nathan and Nadia on speakuppodcast@speechpathologyaustralia.org.au

Lecture Objectives:- Understand the range of normal development for speech and language.- Understand signs and symptoms of speech delay or disorders requiring a referral to a speech-language pathologist.Resources:Identify The Signs of Communication DisordersStuttering (asha.org)ASHA's Developmental Milestones: Birth to 5 YearsLearning More Than One Language (asha.org)Bilingualism_PrimerPediatricians.pdf (washington.edu)Baby Sign Language in the development of young hearing children: A review of selected studies - OvidDSThe effects of sign language on spoken language acquisition in children with hearing loss: a systematic review protocol - OvidDSUsing the Childhood Autism Rating Scale to Diagnose Autism Spectrum Disorders - PMC (nih.gov)Clinical Characteristics Associated With Stuttering Persistence: A Meta-Analysis | Journal of Speech, Language, and Hearing Research (asha.org)Crowe, K. & McLeod, S. (2020). Children's English consonant acquisition in the United States: A review. American Journal of Speech-Language Pathology. https://doi.org/10.1044/2020_AJSLP-19-00168Healey, A., Mendelsohn, A., & Childhood, C. (2019, January 01). Selecting Appropriate Toys for Young Children in the Digital Era. Retrieved November 04, 2020, from https://pediatrics.aappublications.org/content/143/1/e20183348McLeod, S., Crowe, K., & Shahaeian, A. (2015). Intelligibility in Context Scale: Normative and validation data for English-speaking preschoolers. Language, Speech, and Hearing Services in Schools, 46(3), 266-276. https://doi.org/10.1044/2015_LSHSS-14-0120Pontecorvo, E., Higgins, M., Mora, J., Lieberman, A.M., Pyers, J., & Caselli, N.K. (2023). Learning a sign language does not hinder acquisition of a spoken language. Journal  of  Speech, Language, and Hearing  Research, Vol. 66, 1291–1308. https://doi.org/10.1044/2022_JSLHR-22-00505Ravichandran, P., France De Bravo, B., & Beauport, R. (2017, August 14). Young Children and Screen Time (TV, Computers, etc.). Retrieved November 04, 2020, from http://www.center4research.org/young-children-screen-time-tv-computers-etc/

Early speech struggles can also be signs of dyslexia. By the end of the third episode of #DearReadingTeacher, @HoneybeeLiteracy answers a listener's question about the early signs in speech of dyslexia. The founder of Honeybee Literacy, Tiniyja Burney, M.A., CCC-SLP, illuminates why Speech-Language Pathologists should always be included in the early reading conversation. @HoneybeeLiteracy is a Speech-Language Pathologist owned and operated pediatric private practice that specializes in reading disorders, such as dyslexia. Website: https://honeybeeliteracy.com/ Facebook/Instagram: @honeybeeliteracy Services Early On (Michigan) - These services are for birth to three populations. https://www.1800earlyon.org/ (This may be referred to as Early Intervention in other states) Contact your local school district to have your child evaluated for services You may also seek services at local private practices and outpatient facilities Show Notes/Research: Children's English Consonant Acquisition in the United States: A Review; Kathryn Crowe and Sharynne Mcleod; https://pubs.asha.org/doi/10.1044/2020_AJSLP-19-00168 Reading Risk in Children With Speech Sound Disorder: Prevalence, Persistence, and Predictors; Sherine R. Tambyraja, Kelly Farquharson, and Laura Justice; https://files.eric.ed.gov/fulltext/EJ1281182.pdf Understanding Dyslexia in the Context of Developmental Language Disorders; Suzanne M. Adolf and Tiffany P. Hogan Do you have an early reading/struggling reader story to tell? Are you a homeschool Parent or reading educator? Contribute as a guest - ⁠https://www.tinyurl.com/readingteacherpodcast⁠ Do you have an early reading question? elisabeth@readinggardenclub.com

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

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

Episode 52: Implementation science and the power of partnerships with Natalie Douglas and Amy Wonkka Implementation Science IS for All: The Power of Partnerships | MGH IHP How a Power Differential Between Clinicians and Researchers Contributes to the Research-to-Practice Gap: https://pubs.asha.org/doi/10.1044/2022_AJSLP-22-00207 Episode resources: Implementation Science IS for All Virtual Conference April 27-28, 2023 10AM-5PM EST https://www.mghihp.edu/healthcare-leadership/cpd/implementation-science-all-power-partnerships Natalie Douglas -https://impactcollaboratory.org/natalie-douglas-phd-ccc%E2%80%90slp/ Implementation Science: Buzz word or game changer ? https://pubmed.ncbi.nlm.nih.gov/26502033/ How a Power Differential Between Clinicians and Researchers Contributes to the Research-to-Practice Gap-https://pubs.asha.org/doi/10.1044/2022_AJSLP-22-00207#d1e377 https://www.slpnerdcast.com National institute on aging impact collaborative-https://www.nia.nih.gov/research/dbsr/nia-impact-collaboratory From the Mixed-Up Files of Mrs. Basil E. Frank Weiler-https://www.amazon.com/Mixed-Up-Files-Basil-Frank-Weiler/dp/B001W9GBTM/ref=nodl_?dplnkId=6f7a24ed-43cb-43bb-8ffb-2a9d0b4b17ae

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  

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

Episode 47: The diagnosis of developmental language disorder with Dr. Jeanne Tighe Resources:  DLD for families book: https://bcpractice.com/developmental-language-disorder-guide-for-parents-and-families/ SPICES article: https://pubs.asha.org/doi/10.1044/2022_AJSLP-21-00295 radld.org dldandme.org JT's favorite book was: The Housekeeper and the Professor by Yoko Ogawa

Marie, Matt, Michael, Michelle, and Rachel dive into the research and pop news in and related to the field of Speech and Language Pathology and the Informed SLP breaks down the latest research.   On this week's episode the group looks at ableism in dysfluency therapy, transparency in pay, and another ASHA foul-up.  The Informed SLP looks at research around residue and the use of FEES. The Discord is up and ready for people to interact with the crew 24/7 with a new website, www.discord.speechsciencepodcast.com. SSPOD Shoutout: Do you know an SLP who deserves a digital fist bump or shout-out?  We want to know your #SSPODSHOUTOUT, which is recognition for someone doing something awesome somewhere.  SSPOD Due Process: Your opportunity to message us about a problem in your area that you would like us to talk about, use the #SSPODDUEPROCESS.  Contact Email: speechsciencepodcast@gmail.com Discord: https://discord.speechsciencepodcast.com Speech Science Stuff: http://merchandise.speechsciencepodcast.com/ Presence Learning GiveAway: http://giveaway.speechsciencepodcast.com/ ----more---- New Episode and Interact here: www.speechsciencepodcast.com podcast.speechsciencepodcast.com   Support Patreon – https://www.patreon.com/speechsciencepodcast   Rate and Review: https://podcasts.apple.com/us/podcast/speechscience-org-podcast/id1224862476?fbclid=IwAR3QRzd5K4J-eS2SUGBK1CyIUvoDrhu8Gr4SqskNkCDVUJyk5It3sa26k3Y&ign-mpt=uo%3D8&mt=2   Credits Intro Music: Please Listen Carefully by Jahzzar is licensed under a Attribution-ShareAlike License. Bump Music: County Fair Rock, copyright of John Deku, at soundcloud.com/dirtdogmusic The Informed SLP: At The Count by Broke For Free is licensed under a Creative Commons Attribution License Closing Music: Slow Burn by Kevin MacLeod is licensed under a Creative Commons Attribution License.   Show Links The Informed SLP: https://www.theinformedslp.com/review/how-much-residue-is-in-there-introducing-the-vases-for-fees https://link.springer.com/article/10.1007/s00455-021-10293-5 https://pubs.asha.org/doi/10.1044/2021_AJSLP-21-00116   WHATS UP ASHA? https://speechologist.medium.com/cultural-responsiveness-is-for-combatting-oppressive-marginalizing-powers-not-for-platforming-6796ab278d89   Shout Out https://www.speechclub.com/   Lets talk about Pay https://www.nerdwallet.com/cost-of-living-calculator?fbclid=IwAR00tXJveF3LQqJzw2AjBL79gl4ViNOJnvVVmHBXK7ZFEabvEZVeh87T7Tg   Matt's Book Link https://www.amazon.com/gp/product/B09JS6BK1F?ref_=dbs_mng_crcw_0&storeType=ebooks   Speech Science Powered by: PresenceLearning! https://www.presencelearning.com/    

Marie, Matt, Michael, Michelle, and Rachel dive into the research and pop news in and related to the field of Speech and Language Pathology and the Informed SLP breaks down the latest research.   On this week's episode the group looks at Barbara Fernandes' new book “Sis, You Got This,” academic impact or adverse affect in school, and the hidden barriers of getting into grad school.  The Informed SLP looks at Gestalt Language Learners.  The Discord is up and ready for people to interact with the crew 24/7 with a new website, www.discord.speechsciencepodcast.com. SSPOD Shoutout: Do you know an SLP who deserves a digital fist bump or shout-out?  We want to know your #SSPODSHOUTOUT, which is recognition for someone doing something awesome somewhere.  SSPOD Due Process: Your opportunity to message us about a problem in your area that you would like us to talk about, use the #SSPODDUEPROCESS.  Contact Email: speechsciencepodcast@gmail.com Discord: https://discord.speechsciencepodcast.com Speech Science Stuff: http://merchandise.speechsciencepodcast.com/ Presence Learning GiveAway: http://giveaway.speechsciencepodcast.com/ ----more---- New Episode and Interact here: www.speechsciencepodcast.com podcast.speechsciencepodcast.com   Support Patreon – https://www.patreon.com/speechsciencepodcast   Rate and Review: https://podcasts.apple.com/us/podcast/speechscience-org-podcast/id1224862476?fbclid=IwAR3QRzd5K4J-eS2SUGBK1CyIUvoDrhu8Gr4SqskNkCDVUJyk5It3sa26k3Y&ign-mpt=uo%3D8&mt=2   Credits Intro Music: Please Listen Carefully by Jahzzar is licensed under a Attribution-ShareAlike License. Bump Music: County Fair Rock, copyright of John Deku, at soundcloud.com/dirtdogmusic The Informed SLP: At The Count by Broke For Free is licensed under a Creative Commons Attribution License Closing Music: Slow Burn by Kevin MacLeod is licensed under a Creative Commons Attribution License.   Show Links The Informed SLP: https://www.theinformedslp.com/review/let-s-give-them-something-to-gestalt-about Blanc, M. (2012). Natural Language Acquisition on the Autism Spectrum: The Journey from Echolalia to Self-Generated Language. Communication Development Center.' https://repository.usfca.edu/diss/499/ https://pubs.asha.org/doi/10.1044/jshd.4803.296 https://pubs.asha.org/doi/10.1044/2015_AJSLP-14-0166   WHATS UP ASHA? https://www.asha.org/news/2022/february-2022-advocacy-update/?fbclid=IwAR0kj3lnFodk7UokOsdTLmK80owloeUU9Fofnr0xL-aWkHaDIuuVTCSh0a8   Sis, You Got This https://www.amazon.com/Sis-You-Got-This-Speech-Language/dp/057826191X   Barriers to Grad School https://pubs.asha.org/doi/10.1044/2021_AJSLP-21-00124?utm_source=asha&utm_medium=enewsletter&utm_term=featured&utm_content=030822&utm_campaign=ashanow&fbclid=IwAR0LANB9bs62gr36hpAh3OrPVrtIZNEZ4mkFfWq-kBfcC6Yncpc2K-hM2hc   Shout Out https://azednews.com/az-dept-of-education-donorschoose-launch-14-million-effort-to-support-educators/ Matt's Book Link https://www.amazon.com/gp/product/B09JS6BK1F?ref_=dbs_mng_crcw_0&storeType=ebooks   Speech Science Powered by: PresenceLearning! https://www.presencelearning.com/    

UNLOCKED from our Patreon page, it's the Meaningful Differences Book Club! Voted on by our patrons in 2020, we discussed "Meaningful Differences" by Hart and Risley.  And here it is: 2+ hours all about this classic, and sometimes controversial, book documenting Betty Hart and Todd Risley's longitudinal study exploring the home lives of 42 families to try to determine why some children develop more robust language than others.  If you ever wondered where the 30 million word gap comes from, you've found it.   Interested in more Book Clubs? Want to vote on what we read next? Feeling FOMO at getting this a full year late? Wish your 2 CEs for listening to the episode were FREE??? Join us on Patreon to get all of our episodes a week early, access to these bonus episodes, plus other goodies. This episode is worth 2.0 LEARNING CEUs Works discussed this episode: Hart, B., & Risley, T. R. (1995). Meaningful differences in the everyday experience of young American children. Baltimore, Md: Paul H. Brookes.  Sperry, D.E., Sperry, L.L., & Miller, P.J. (2019).  Reexamining the verbal environments of children from different socioeconomic backgrounds.  Child Development, 90, 1303-1318.  doi: 10.1111/cdev.13072 Golinkoff, R.M., Hoff, E., Rowe, M.L., Tamis-LeMonda, C.S., & Hirsh-Pasek, K.  (2019).  Language matters: Denying the existence of the 30-million word gap has serious consequences, Child Development, 90, 985-992.  doi: 10.1111/cdev.13128 Gilkerson, J., Richards, J.A., Warren, S.F., Montgomery, J.K., Greenwood, C.R., Oller, D>K., Hansen, J.H.L., & Paul, T.D.  (2017).  Mapping the early language environment using all-day recordings and automated analysis.  American Journal of Speech-Language Pathology, 26, 248-265. doi: 10.1044/2016_AJSLP-15-0169 If you're interested in ordering CEs for listening to this episode, click here to go to the store page. You'll need to enter your name, BCBA #, and the two episode secret code words to complete the purchase. Email us at abainsidetrack@gmail.com for further assistance.

Dr. Janet Patterson, Research Speech-Language Pathologist at the VA Northern California Healthcare System, speaks with Rob Cavanaugh of the University of Pittsburgh, about dosage in delivering aphasia treatments, and about the difference between dosage in research settings and dosage in clinical settings.       In today's episode you will hear about: The concept of voltage drop, its definition, and how it applies to aphasia rehabilitation, Opportunity cost and factors that affect the ability to deliver a treatment protocol with fidelity to the research evidence, and Mindful clinical decision-making to assure delivery of the best and most efficient treatment possible within existing clinical parameters.     Janet Patterson: Welcome to this edition of Aphasia Access Podversations, 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 Healthcare System in Martinez, California. Today I am delighted to be speaking with my friend and an excellent researcher, Rob Cavanaugh, from the University of Pittsburgh. Rob and I have had several conversations about aspects of aphasia rehabilitation, beginning when he was a Student Fellow in the Academy of Neurologic Communication Disorders and Sciences. Our conversation today centers on a topic we both have been thinking about, dosage and aphasia treatment.    As Rob 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 White Paper, authored by Dr. Nina Simmons-Mackie. For more information on this White Paper, 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 Rob Cavanaugh focuses on gap area 4 - Insufficient intensity of aphasia intervention across the continuum of care. Treatment intensity is not a singular concept, but rather has several components to it, including decisions about dosage. Much has been written about intensity in aphasia rehabilitation, however, as yet there is no clear and convincing argument about what, exactly, is the best intensity for delivering an aphasia treatment to an individual with aphasia. I hope our conversation today can begin to shed some light on this topic.    Rob Cavanaugh is a third year Ph.D. candidate in the Department of Communication Sciences and Disorders at the University of Pittsburgh. Before moving to Pittsburgh, he worked as a clinical speech-language pathologist in Charlotte, North Carolina, in outpatient and inpatient rehabilitation settings. His research interests focus on identifying implementation gaps in aphasia rehabilitation, improving patient access to therapy services through technology, improving treatment outcomes, and advancing statistical methods used in aphasia research. Rob received his master's degree in Speech and Hearing Sciences from the University of North Carolina at Chapel Hill. He is currently doing interesting work at Pitt, and I look forward to our conversations, Rob, today and in the future. Welcome, Rob to Aphasia Access Podversations.   Rob Cavanaugh: Thanks Janet, it's great to be here, and I'm really excited to talk about dosage and aphasia treatment.    Janet: Great! I think the only thing I'm going to have to worry about Rob, is keeping us contained because we could probably talk for days on this subject, and our listeners would get tired of hearing us.    Rob: That is definitely true.   Janet: Today, as I said, Rob, I'd like to talk to you about dosage and aphasia treatment.  You and your colleagues recently published a paper in AJSLP that compared dosage in research papers and dosage in clinical practice. The team did great work, and I think it's an impressive paper. As we try to create an effective and efficient treatment program for our clients with aphasia, one of the elements we consider is dosage of the treatment we select. Simply defined, dosage can be thought of as the amount of treatment provided at one time, how often that treatment is provided, and the length of time the treatment lasts. We sometimes hear the terms session length, frequency and duration. Would you agree with that definition, Rob?    Rob: Thanks, Janet. I'm really excited about this work, and I want to take a minute to acknowledge the research team on this project before we really get into dosage because it really was a big team effort. Christina Kravetz is a clinical speech language pathologist here in Pittsburgh, Yina Quique, who is now a postdoctoral fellow at Northwestern, Lily Jarold who is now working on her clinical master's degree at the University of South Carolina, and Brandon Nguy who I think you had on an Aphasia Access Podversations a couple weeks ago to talk about his presentation and some of his work analyzing demographic trends in these data. I should also acknowledge our funding sources, which include the School of Health and Rehabilitation Sciences here at Pitt, and the National Center for Advancing Translational Sciences.   I think that's a good definition to get us started talking about dosage. We know that the amount of treatment is most often reported in terms of time, how many minutes in a treatment session, or how often sessions occur, or how many total sessions are there. But perhaps I can add one more dimension to our discussion about dosage, which is that it's not just how much treatment occurs in terms of time, but also what the treatment is made up of, what are the activities that we're doing within the treatment? How many times do we do them in a session? Or how many times do we do the activities per hour of treatment? As much as I'd like to think of dosage and aphasia treatment as an analogy to taking an antibiotic, such as when you have strep throat or some infection, you take 250 milligrams twice a week for two weeks. Dosage in aphasia rehabilitation is probably not that straightforward, right? Our treatments are complex and holistic and answering questions like how much of something gets really tricky really quickly.   Janet: I can imagine, and you know, when we first started talking about dosage several years ago, people used exactly that analogy. It's hard to appreciate that analogy because therapy is not this little unit of a pill or a tablet, it's a complex interaction between people. When we think about dosage, sometimes as clinicians we can decide dosage for our treatment, but sometimes it may be imposed upon us by an external source, such as our workplace or healthcare funder. And while it's important that we take guidance from the literature to determine dosage, I am not sure that that always happens. Rob, you are both an aphasia clinician and an aphasia researcher, how did you get interested in thinking about dosage as it relates to aphasia treatment?   Rob: I am a clinician by training, and that's really the viewpoint with which I started. Like you mentioned, I worked primarily in outpatient rehab settings, where most of the individuals who came into our clinic were home from the hospital, and they were working to recover from a recent stroke or traumatic brain injury or brain cancer, or some similar life-changing event. I think you're right, that practical dosage in a clinical setting like this is some combination of the clinical decision-making that we do as expert speech-language pathologists, and then all of these real-world constraints around us such as insurance, clinician availability, or the client's ability get to the clinic on a regular basis. I was fortunate to have excellent mentors and I'm going to acknowledge them. MaryBeth Kerstein, and Lisa Hunt and Missy Davis at Carolinas Rehab, were expert clinicians for me as a novice coming in. They really knew how to navigate their clinic, what they wanted to do from a clinical standpoint, and then what they were looking at in the insurance paperwork, and what to do when the patient said, “Well, I can only get here once a week”. My interest in dosage really comes from the perspective of, I've got this treatment, and it requires a lot of dosage and I want to fit it into a very narrow window of time. As a clinician you're grateful to have twice weekly sessions for six or eight weeks, and then you read a treatment study and it said that it provided treatment for 20 or 30, or even 60 hours. That's really hard to do in practice. So you know, we want to be confident that if I'm going to go with a treatment, if I'm going to choose it, I'm not wasting someone's time because I don't have enough of it for the treatment to be effective. And I'm also not wasting time by doing too much of it.   Janet: That's so important to think about Rob. You also mentioned something else, patient characteristics. Can an individual get to the clinic as much as they need to? Are they motivated to participate in this treatment? Those pieces must factor into your decision as well.   Rob: Sure, and you know, I think about some of our really high intensity treatments. Here at the Pittsburgh VA, we recently completed an ongoing study of semantic feature analysis which provides 60 hours of SFA. That's a lot of time to be doing a single treatment and so certainly motivation is a really important piece that we have to fit into the conversation about dosage.   Janet: As an aside, I'm sure you know, we're doing some investigation into motivation and what it means and how it works and how we can best use it in treatment, but it certainly is part of the decisions that you make when you when you select a treatment. I am glad that you're thinking about these pieces, because they're all focused on getting the most effective, efficient treatment that we can for a patient, and you're right, not wasting time or resources.    In your recent publication, Rob, you approach the topic of treatment dosage by identifying the gap between the dosage reported in research studies and the dosage used in clinical practice. By the way, the link to that paper is at the end of these Show Notes. It appeared in AJSLP so our listeners can access that paper and read your work for themselves. In that paper, you and your colleagues use the term voltage drop to describe this difference between research and clinical application. Will you explain the term voltage drop to us and describe how you see its relevance to aphasia treatment?   Rob: Sure, so voltage drop is this idea that when you take an intervention that worked in a controlled research setting, and we saw some good results, and then you implemented that scale in the real world. You give it to clinicians and while they might use it in their clinical practice, there can be a reduction in how effective that intervention is, right? The real world is messy, it's often hard to implement the research protocol with high fidelity, or there are good reasons to alter the protocol for individual situations, but we don't know how those alterations might affect the outcomes – this is voltage drop. This idea has been around in the implementation science literature for quite some time. I actually first heard this term on another podcast called Freakonomics, which is very different from what we're talking about today. It was in the context of how do you scale up social interventions like universal pre-kindergarten, and the challenges that come with finding something that works in one situation and trying to bring it to the whole country? And I thought, “Oh, this is exactly what I've been worrying about in our clinical practice world.” How do we take something that works in a small, controlled setting and make it work in larger settings throughout the country, in clinical settings? The term voltage drop seemed like a great way to motivate the conversation in our paper about dosage. If we can't implement the same dosage in clinical practice that we see in research, we could see a voltage drop in our treatment effectiveness for people with aphasia.   Janet: Right. I like that that term. Rob, as I was listening to you talk about this term voltage drop, it reminded me of phases in research, where you start out by demonstrating that the technique works in a research environment, and then moving it to a clinical environment to see exactly how it does work. I also thought about how we as clinicians need to be mindful that when we implement a treatment, if we can't meet the conditions in the research treatment, if we aren't taking into consideration this potential voltage drop as we implement treatment, we may not be doing the best job for patients. Does that make sense to you?   Rob: Yeah, I think it's a really hard balance as a clinician. You might have treatment which you feel like would be particularly helpful for someone. But the literature says this treatment has been implemented for 30 or 40 or 60 hours in the research lab and you're looking at the paperwork for this person which says that they have 20 visits, and you're wondering how you're going to make that work? Should you use a different treatment that doesn't seem to have as much dosage in the literature, or should you try to fit that treatment into what you have with that person? I think those are questions we don't have good answers to yet and clinicians struggle with all the time.   Janet: Which leads me to my next question for you. As clinicians recognizing the situation, how should we use this concept of voltage drop as we determine an individual's candidacy for a particular aphasia treatment technique, and determine treatment dosage in our own clinical settings? That's a loaded question, by the way!   Rob: That's a great question. I think this area of research has a long way to go before we really have any definitive answers. I think this idea of voltage drop right now perhaps is just something that can play a role in our clinical decision-making process when we go about implementing the aphasia treatment literature with our clients on a daily basis. For example, we often deviate from the evidence base in ways we think will improve our treatment outcomes, right? We personalize our treatment targets so that they're motivating and relevant for our client's goals. We might integrate multiple treatment approaches together or provide two complimentary approaches at the same time to address multiple goals. These adjustments reduce how closely our practice matches the evidence base for a treatment, but hopefully they improve the outcomes. On the other hand, we often have to make these compromises that we're talking about and deviate from published protocols because of practical constraints in ways that could reduce effectiveness. Not being able to even approximate a published treatment's dosage because of insurance or clinician availability or transportation has the potential to reduce treatment effectiveness. I think these factors probably should play a role in whether or not we choose a particular treatment approach. Maybe we use the difference in the published dosage versus what face to face time we know we're going to have to make a determination about how much home practice we suggest the person do. Or maybe we say there's just too big of a difference in what I know I can do with this person, and I need to think about other treatment options.    I'd also like to add maybe an important caveat here, which is that I don't know of any aphasia treatment, and I would love for somebody to email me and tell me what study I haven't read yet, but I don't know of any literature that has established an optimal dosage for even an average person with aphasia, and certainly none that say if you see a person with aphasia with a certain profile you need to provide at least X minutes of this treatment for it to be effective. Most of our evidence base tells us about the average effect size across participants for a single dosage. And it's really hard to extrapolate this information to make decisions about an individual person with aphasia.   Janet: I think you're absolutely right, Rob. I have not read a paper about optimal dosage for any kind of a treatment either. And one of the things that I was thinking about as you were talking is that I want to assure clinicians that we're in a messy world here trying to figure out dosage and intensity. I want clinicians to be able to continue to walk through their clinical decision-making without trying to figure out how all these pieces fit together in treatment. The words that came to my mind, as you were talking about strategies that clinicians might use as they decide whether they want to use a particular treatment or not, is mindful clinical decision-making. If you choose a treatment knowing that you cannot deliver the number of sessions that are listed in the research literature, then what are you balancing or what are you giving up in order to implement that treatment? It's mindful decision-making, as you apply a treatment. Does that make any kind of sense to you in terms of looking at dosage?   Rob: Yep. I think that makes a lot of sense. It brings up this idea to me of opportunity cost, right? Imagine a decision tree of things or directions you could go as a clinician, and every branch of that tree that you could take means that you don't get to take the other branch. This could be a paralyzing decision-making process if you try to incorporate too much, but maybe dosage is one of those key elements that you say, “I'm going to prioritize, making sure dosage is at least approximate. Maybe I can't get 30 hours, but I can get close, so I feel confident that's not going to limit my treatment's effectiveness.”   Janet: I think it is important to pay attention to dosage. Don't just proceed with random assumptions about dosage but pay attention to it as you're deciding to implement a treatment.   We've talked a lot about the background and the importance of dosage and mindful clinical decision-making from a clinical perspective. I hope our readers know by this time that that the comments you're making are based in science, so I want to talk for a little bit about your paper in AJSLP, if we can. I mentioned already that the reference is listed below in Show Notes that accompany this podcast, and our listeners can also find it by searching the ASHA publications website, and also your University of Pittsburgh website, on the Communication Sciences and Disorders page and the Language and Cognition Lab page. You have two methods in this paper, analyzing hospital billing data, and also conducting a scoping review of the literature. Without delving too far into the details, will you tell us about these methods and how they allowed you to then examine the research-practice dosage gap?9   Rob:  Sure, I'm happy to summarize. I learned, you know, halfway through this project that I bit off quite a quite a bit of research. It was a pretty large project for me as a doctoral student! Our driving research purpose for this study was to estimate how well the typical dosage that was provided in clinical practice approximated what was provided in the research literature. There are two elements here, what's typical in clinical practice and what's typical in research. In particular, I was interested in outpatient clinical practice, because this is often the last stop in our rehabilitation medical model for people with aphasia, and it's where my clinical experiences had mostly been. To estimate dosage in clinical practice, we looked at billing data from a large regional provider in western Pennsylvania. Every time an SLP sees a client they have to bill a specific code to the insurance company for that visit. These codes are attached the electronic medical record and we were able to use resources in Pitt's Department of Bioinformatics to extract these billing codes. We counted them all up for people with a diagnosis of stroke and aphasia who were seen by a speech-language pathologist. We looked to see how many were there? How often do they occur? Over how many weeks did they occur? We don't, of course, know the extent to which these specific providers match the rest of the US or certainly not international clinics, but we felt like this was a good start, given the lack of information in the literature.    Then on the research side, we wanted to estimate the typical dosage for studies that had been published recently. If we looked back 30 years, we'd probably still be reading research articles, so we used a scoping review format because our research question was really focused broadly on dosage rather than the specific study designs, the quality of the studies, or the outcomes, we just wanted an estimate of the dose. I have to give a shout out here to Rose Turner, the librarian on our team at Pitt, who guided this aspect of the study, I strongly recommend anyone use a librarian for reviews like this, we could not have done it without her. We started with over 4500 study records which matched our search terms and we whittled them down to 300 articles.   Janet: That's a lot of work, Rob.    Rob: It was definitely a lot and I will say we have a team, right? This was not me, this was a team effort. We ended up with about 300 articles, which essentially describe the aphasia treatment literature over the past 10 years or so. These were not studies that were provided in the hospital, these are mostly community-based treatment studies. They didn't have any extras, like the people receiving treatment weren't also receiving a specific medication or some kind of brain stimulation, it was just behavioral treatment. We pulled the dosage out of these studies and then we compared them to what we found from our billing data.   Janet: I read the paper a few times, and I'm not unfamiliar with a scoping review or with gathering data from clinical records. I found myself as I was reading that paper thinking this must have taken you years and years and years, which of course, I know it didn't, but your team really has, I think, produced a great paper that is going to be a good foundation for us to think about dosage.   That's a wonderful summary of the methods you used and anybody who reads your paper will appreciate the summary that you just gave. What messages did you glean from the data that you collected? I am thinking of the specific research conclusions, and also messages that maybe might help us as clinicians?   Rob: Sure, so I don't think it's a surprise to any clinician out there that there was a meaningful gap in dosage between the research studies we looked at and the billing data. This was particularly true for the number of treatment hours. Research studies provided on average about 12 more hours of treatment than we found in the clinical billing data. That's per episode of care. Think about a person who comes into the clinic, has an evaluation, receives a number of treatment sessions, and is discharged. On average, that episode of care has about 12 hours less than your typical research study. This largely confirmed our hypothesis going in that we would see a gap here. Interestingly, clinical practice seemed to provide treatment over a longer period of time. The total number of weeks was longer than what was typically done in research studies. You might take a conclusion away that in at least outpatient clinical practice, treatment might be a little bit more distributed over time and less intensive than treatment provided in our research literature.    I think it's important to highlight that this is a really rough comparison of dosage, right? Billing data are not really specific to the clinician patient interaction. It's just the code that the clinician punches into their software when they're done. We've glanced over some important aspects here that we just weren't able to look at. For example, dose form, or how many times each element of a treatment was completed, is not something our study was able to look at. These are some of the most important aspects of treatment, and what I try to do as a clinician, such as goal setting, and counseling and education, the time working on our communication goals outside of impairment focused tasks. Those elements aren't often part of treatment studies, but they're absolutely part of clinical practice, and they take a lot of time. That's an unaccounted-for difference that could mean that we've underestimated this gap and dosage. On the other hand, clinicians often assign home practice; we work on something in the face-to-face session and then I say, great, you've done an amazing job, I want you to practice this 20 minutes a day until the next time you come in, something like that. We didn't have a way of tracking home practice in our study. Perhaps home practice is an effective way of making up this dosage gap. But we're not able to understand what role it might play based on these data.   Janet: I think you're right about that, and it makes a whole lot of sense. This is a start in our direction of trying to really understand more carefully what dosage means. Does it mean this large thing? Does it mean very specifically, how many times are we delivering the active ingredient in a specific therapy? There's so much more that we need to know, and I think you have figured out by now that I think dosage matters, I think it matters a lot. I think it matters a lot more than we've ever really paid attention to. I know also, and you've certainly described this, every day in clinical practice we make decisions about an individual's candidacy for rehabilitation, including that what we think as clinicians is the best match between a treatment, a patient's personal and aphasia characteristics that they bring to the rehabilitation enterprise, and the likelihood of an optimal outcome. If we get it wrong, because of a mismatch in dosage, we may not successfully translate research into practice, and we may not make that much of a difference in our patient's life, or at least we may not make as much difference as we hope to. In the case of a potential mismatch, how do you see that affecting our clients, their families, and our healthcare system, because we do have to think about all of these pieces of the aphasia rehabilitation enterprise.     Rob: I think you're right you know, this is just a start. When I started my doctoral program at Pitt Dr. Evans and I were working on grants, and we would always write a statement like, treatment services are limited, and then I'd go try to find the citation for that line, and it's hard to find. Dr. Simmons-Mackie's White Paper is fantastic and provides a little bit of evidence to that regard but there aren't a lot of numbers. So, I think you're right that this is not the end of the story, I'm hopeful this study is a start. I think if you buy into this idea that too much of a gap in dosage could result in voltage drop in our treatment effectiveness and poor outcomes, I'm concerned that our ability to help people with aphasia and their families recover and adjust and thrive with their new reality is diminished in real world clinical practice. That's a big concern for me, and that's the reason that I am a speech-language pathologist and working with people with aphasia. I think that's something we need to understand better as a field. I'm also aware that when somebody decides to come to treatment, they're dedicating time and energy to themselves and trusting us as clinicians that we know how to best use their time and energy. The time spent coming into the clinic or doing home practice could just as easily be spent with family or friends or in other fulfilling activities, so I want to be respectful of their time.    With regard to how this could affect our health care system, I don't know that I have a great answer for you. Sometimes I wonder whether the current medical model is really a good fit for chronic conditions like aphasia. The gap in dosage might just be one manifestation of the challenges that clients and families and clinicians face every day, in figuring out how to make affordable and effective and motivating treatment options available for people long term. That's got to be a priority for us moving forward, because I'm not sure that our current model really fills that need.   Janet: Rob, I agree with you on that, and I'm thrilled that you and your colleagues are making this initial attempt to try to figure out how we can best match the treatment and the clients in terms of dosage, to achieve the optimal outcome that we possibly can.   You know, Rob, that I think that this conversation is fascinating, and we could talk all day. My belief is you and your team have just scratched the surface about treatment delivery information that we must be mindful of, in both our research and our clinical practice. A lot today that we've talked about really relates to clinical practice, but I imagine there are just as many thoughts or concerns or cares that we need to take when engaging in a research protocol to evaluate the success of a treatment.    Rob, as we draw this interview to a close, what pearls of wisdom or lessons learned do you have for our listeners, both researchers and clinicians, about dosage and aphasia rehabilitation, bridging the research-practice dosage gap, and reducing the voltage drop as we implement aphasia treatment.   Rob: Yeah, it's a tall order.   I don't think there's a quick fix, certainly, but I I'm going to summarize and expand on some of our recommendations from the paper. One thing that's important, I think, as we move forward is that, as researchers, we need to be really thoughtful about our selection of dose. As you mentioned, with regard to the stage of research, maybe our selection of dosage in early-stage research reflects our underlying research questions and issues of statistical power and funding constraints. For later stage research that's starting to think about clinical outcomes, we need to provide a clear justification for deviating from a dosage that's not attainable in clinical settings. In the same vein, I think as researchers we can do more to provide easily accessible and hopefully free materials to clinicians to facilitate home practice and to augment the limited face-to-face time that clinicians might have with their clients. Software and app development are getting there, and I think they're improving how easy it is to do home practice. To me a treatment study that you want to be out in the real world is only going to be successfully done if you really give clinicians easy access to tools where they can implement it. I know, just like many clinicians know, their time is really limited particularly between seeing patients, and so I don't want to make them do a whole lot of work to implement my intervention.    The second recommendation from our paper is that we need more research on the role of dose. We've talked about one challenge in this line of work, which is that dosage requirements are probably a function of an individual's language profile, almost certainly a function of their individual language profile, and their individual circumstances. If you compare one dose to another in some group trial, it only gives you so much information about what dose is best for a given individual. I think this is a problem our field is going to have to solve. Our lab is working on one solution that we're really excited about, which is to base treatment dosage not on the number of minutes, or how often you see someone, but on their real time performance on individual treatment items, like their ability to produce a specific sentence in script training or name a word, if you give them a picture. Our lab is not really thinking about dosage in terms of treatment time, right now we're thinking about dosage at the item level individually for each person. We're finding some strong preliminary evidence that complex algorithms can tailor item level dosage to real time performance and can make treatment potentially more effective and more efficient in terms of how much we can do in a period of time. But we have a lot more work to do, establishing this in a larger sample size and making sure that it translates well to clinical practice.    This brings me to the last recommendation, which is we need more research that looks at how can we implement our research in clinical practice. I believe there was a paper that came out in AJSLP recently (Roberts et al., 2021) which found that 1% of studies published in the Asha journals were implementation focused. I think that number is too low. We need more implementation-focused research that has contributions from all stakeholders, people with aphasia and their families and clinicians and researchers. It's going to take a team working together to ensure that we can translate our evidence base to clinical practice without voltage drop. I think that's where I would love to see our field headed.    Janet: Rob, I love the recommendations from your paper and the way that you just described them. It's exciting to be in this time in our field, where people like yourself and your team are thinking about the idea that we've got some great therapies, now how do we deliver them in ways that are sensitive to the needs of the clinician and the needs of the client and delivered in a mindful way of clinical decision-making.    Thank you for all of those recommendations and for your work. You're going to do more, right?   Rob: Thank you for having me. Yes, there will be more.   Janet: This is Janet Patterson, and I'm speaking from the VA in Northern California, and along with Aphasia Access, I would like to thank my guest, Rob Cavanaugh, for sharing his knowledge and experiences with us as he and his colleagues investigate treatment parameters, including dosage, in aphasia rehabilitation. We look forward to seeing many additional articles on this topic from Rob and his colleagues.    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 and links from this episode:   University of Pittsburgh Department of Communication Sciences and Disorders Language Rehabilitation and Cognition Lab https://lrcl.pitt.edu  @pittlrcl    University of Pittsburgh  Department of Communication Sciences and Disorders @PittCSD      Cavanaugh, R., Kravetz, C., Jarold, L., Quique, Y., Turner, R., & Evans, W. S. (2021). Is There a Research–Practice Dosage Gap in Aphasia Rehabilitation? American Journal of Speech-Language Pathology. https://doi.org/10.1044/2021_AJSLP-20-00257   Roberts, M. Y., Sone, B. J., Zanzinger, K. E., Bloem, M. E., Kulba, K., Schaff, A., Davis, K. C., Reisfeld, N., & Goldstein, H. (2020). Trends in clinical practice research in ASHA journals: 2008–2018. American Journal of Speech-Language Pathology, 29(3), 1629–1639. https://doi.org/10.1044/2020_AJSLP-19-00011

In this episode, let's talk about some ways to help individuals with autism build friendships, and how we can be a good friend. References: Conn, C. (2016). Play and friendship in inclusive autism education: Supporting learning and development. Abingdon, UK: Routledge. Finke, E.H. (2016). Friendship: Operationalizing the intangible to improve friendship-based outcomes for individuals with autism spectrum disorder. American Journal of Speech-Language Pathology, 25(4), 654-663. doi: 10.1044/2016_AJSLP-15-0042. Leaf, J. (2017). Handbook of social skills and autism spectrum disorder. Assessment, curricula, and intervention. New York: Springer International Publishing. doi: 10.1007/978-3-319-62995-7. Locke, J., Williams, J., Shih, W., & Kasari, C. (2017). Characteristics of socially successful elementary school-aged children with autism. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 58(1), 94-102. doi: 10.1111/jcpp.12636. Maiano, C., Normand, C.L., Salvas, M., Moullec, G., & Aime, A. (2016). Prevalence of school bullying among youth with autism spectrum disorders: A systematic review and meta-analysis. Autism Research, 9(6), 601-615. doi: 10.1002/aur.1568. Owen-DeSchryver, J.S., Carr, E.G., Cale, S., & Blakeley-Smith, A. (2008). Promoting social interactions between students with autism spectrum disorders and their peers in inclusive school settings. Focus on Autism and Other Developmental Disabilities, 23, 15-32. https://doi.org/10.1177/1088357608314370. Timms, L. (2011). 60 Social situations and discussion starters to help teens on the autism spectrum deal with friendships, feelings, conflict and more: Seeing the big picture. London: Jessica Kingsley Publishers. Links: https://raisingchildren.net.au/autism/communicating-relationships/connecting/friends-peers-asd https://raisingchildren.net.au/autism/school-play-work/social-life/social-activities-for-teens-with-asd https://raisingchildren.net.au/babies/play-learning/playgroups/about-playgroups https://raisingchildren.net.au/autism/school-play-work/school/school-relationships-asd https://www.novita.org.au/helpful-information/supporting-girls-with-asd-to-make-friends/ http://www.tonyattwood.com.au/books-by-tony-m/archived-papers/75-understanding-and-teaching-friendship-skills For more information, head over to Aspect Australia - www.autismspectrum.org.au. Disclaimer: I'm not a professional, just a student with a passion for autism.

Ellen Bernstein-Ellis, Co-Director of the Aphasia Treatment Program at Cal State East Bay, speaks with Dr. Marion Leaman about how personal experience of social isolation during COVID might be leveraged as a catalyst for change in how we provide services in long term care settings. They also discuss Dr. Leaman's work on promoting the value of conversation as a clinical goal across the continuum of severity in aphasia.   Marion Leaman, recipient of a 2021 Tavistock Trust for Aphasia Distinguished Scholar, is an assistant professor at the University of Kansas Medical Center, where she is the director of the ALL-CAN-Converse Lab. she conducts research focused on aphasia intervention that has the goal to improve real world everyday conversation for people with aphasia and their families. Before returning to school in 2015 for her PhD, Marion had practiced as a speech-language pathologist specializing in aphasia for 22 years. Listener Take-aways In today's episode you will: Learn how experience of social isolation during Covid can help SLPs personalize their communication partner training in SNF settings Hear about individual and system changes that can contribute to creating a more positive communication culture in SNF settings Learn how conversation can be a viable and important clinical goal across the continuum of aphasia severity Hear about the search for clinical tools to help SLPs reliably and meaningfully measure conversation Show notes edited for conciseness Ellen Bernstein-Ellis (interviewer):  Welcome to the Aphasia Access Aphasia Conversations podcast. Welcome to the episode Marion.  Guest: Marion Leaman Thank you. Hello, It's so nice to be here.  Well, congratulations again on being selected as one of the 2021 Tavistock Trust for Aphasia Distinguished Scholars this year. It was exciting to have that announced at the Clinical Aphasiology Conference. And it's early in your award. But what do you see as the benefits of being a Tavistock scholar? Marion Leaman: It's been really terrific so far, and I could not be more honored for this recognition. I'll say even in this short time since May, the Tavistock Scholar Award has given me so many opportunities to talk with more clinicians, researchers and even people outside the field--personal friends, other people in other disciplines at my university, to explain to them why therapy that addresses everyday conversation for people with aphasia is so urgent. We're going to be exploring that more today. It's going to be a wonderful conversation about conversation. I'd like to start with asking you if you have a favorite clinical experience, that points to the value of incorporating life participation approach to aphasia, or LPAAA, into your clinical work?  Marion Leaman:  I actually have two small stories that I would really love to share with you. So we often hear about big and exciting LPAA experiences, but I want to highlight how small LPAA moments can also have big therapeutic impact. These two people whose stories I'm going to share, we're each living in different skilled nursing facilities. They each had nonfluent aphasia, which was quite severe. They had each been labeled as noncompliant because after working with their SLPs for several sessions, they refuse to allow their SLPs back in their rooms and SLP services were then discontinued. Importantly, these people were at different facilities with different SLPs and none of these people knew each other.  So the first person had global aphasia, and he loved following the stock market. So in my best LPAA clinician mode, I thought I was very clever, and I made laminated logos of his favorite stocks. For our first session, when I proudly showed them to him, he pushed them aside and took out the box where he kept his hearing aids. Just then, I heard his wife sigh in the background. She verbally and with frustration told me that he kept taking out those hearing aids, and that she and the nurse had to keep putting them away to redirect his attention to physical therapy, or tasks like dressing and grooming. She was angry that he, once again, was noncompliant with speech therapy when he pushed away my materials. She commented with annoyance that she changed the batteries the day before when he was sleeping. I signaled to her to not say anything more just then and to let me interact and communicate with her husband regarding his concerns. I followed his lead and trained my attention on his hearing aids engaging intensely and trying to understand what he wanted to tell me in that very moment. And in this highly nonverbal conversation, which took a good 10 minutes or so, he communicated to me that he wanted more than anything else that day, to have the batteries of his hearing aids changed. So we changed the hearing aid batteries.    The second person's story that I want to share with you she had severe transcortical motor aphasia. At my first visit, she allowed me to administer some formal and informal testing. But when I came back, she began wheeling herself out of the room in her wheelchair the instant she saw me. But, she gazed over at me and gestured to me to come with her. I followed her lead, leaving my well planned out therapy materials behind. She wanted me to push her wheelchair around the facility, visiting the garden, the patio, the music room, the cafe. While we did this, we conversed verbally and non-verbally about the locations and activities. I shared some of my interest in music and she gestured to me that she was a cellist. And in fact, she was an accomplished professional cellist, which I had not known until that moment.  So I want to share with you that neither of these individuals ever refused speech therapy again. This was not in any way something special or unique about me. This happened because with each of them, I demonstrated through my behavior that I was engaged and interested communication partner who valued what they wanted to do and say that day, how they wanted to participate in their own therapy, and in their own lives. I'll also add that the man's wife, and later the woman's family, in observing my engaged behaviors that supported participation and real world conversational desires, immediately changed their behaviors as well. Each of these families adopted approaches that valued the individual, communication, and importantly, that provided each person with opportunities for directing their own participation, Marion, those are really powerful stories. And for me, it really harkens back to what has been transformative to me as a clinician---thinking about the work focused on relationship-centered care, which seems like a high value for you. I refer our listeners to some of the wonderful work done by Felicity Bright in this area. I know there's a article by Worrall and colleagues in 2010, and a recent one in 2020 by Cohen-Snyder, Chan and McCall, that focus on the value and critical importance of relationship-centered care. So thank you for sharing that.  Before we explore your passion for starting conversation treatment. I want to share a quote from a recent impactful article in AJSLP that you co-authored with Jamie Azios, exploring how our personal experience with COVID-related social isolation might help us to promote change in long term care settings. You say, “We now have an audience with direct personal experiences of social distancing and the harmful feelings associated with being excluded from everyday interactions. Therefore, the time is ripe to overcome barriers to culture change and increase the value of communication and social inclusion in long term care.” That's on page 321 of your article that you co-authored with Jamie. I found that really powerful. What do we know about the negative consequences of social isolation? Marion Leaman: Yeah, that's a great question, because there are really some very significant consequences when people are socially isolated. So this includes things like depression and other mental health concerns that can also be related to reduced communication opportunities and communication. But there even can be very significant medical consequences, such as increased risk of heart disease, diabetes, and even death. Your article lays out some of these factors. You refer your readers to the Aphasia Access White Paper authored by Nina Simmons-Mackie that does a beautiful job of laying out some of the consequences of social isolation. In your article, you mentioned the work by Page and colleagues that highlights the benefits of a Communication Training Plan that can assist staff in completing their patient ADLs in less time and with improved caregiver or resident relationships--going back to that relationship-centered care again. Can you describe this tool for our listeners?  Marion Leaman: Sure, absolutely. Page, along with several colleagues extended the idea of using a written communication plan for optimizing communication between CNAs and residents of skilled nursing facilities that had originally been innovated by Genereax and colleagues. The plan includes things such as how the person communicates, how to communicate with the person, the person's habits, and their behaviors. But key to Pages work with these communication plans, was adding a residence life section to the plan and including brief and regular hands on training in the room with the CNA and the resident, in little five or 10 minutes spurts. And most importantly, in my mind, taking an approach that highly values the insight, expertise and experience of the CNA, so that the SLP and CNA would collaboratively develop the plan together.  Wow, that's really a great example. It reminds me that to improve communication culture in long term care, it's going to require both individual and system level changes. The system level changes are something that Aura Kagan is always reminding us of-- that we have to look at this broader piece. You and Jamie Azios lay out an action plan. What are some of the things that SLPs can do to take immediate action? Marion Leaman:  So first and foremost, I think something that we can do that's easy and very important, is to consistently model Person-Centered or LPAA interactions by being interested and engaged with our residents in skilled nursing facilities during our own physical care routines that we have to do as SLP. For example, if you're readying a lunch tray for a bedside swallow evaluation, there's no reason that we can't engage the individual on a really personal level by asking about food preferences, or even sharing of ourselves in small comments, like “my dad used to make the worst meatloaf”, because it engages the person and lets them know us as individuals and opens the door for that person to also share related kinds of stories.  So again, even if you're connecting over meatloaf, sometimes that's just so valuable.  Marion Leaman: I know. Well, and you laughed, right? We just had a connection over meatloaf, fictitious meatloaf.  How about an example of near-term action?  Marion Leaman:  Moving out a little bit on the trajectory, I think about the closest people we can train and get on board with this is likely PTs and OTS and our own Director of Rehab who are likely going to value communication and how that impacts the person's interactions on an everyday basis. So we can just start really close to home by doing a little bit of training with PT and OT, and that can go a long way. That leads us to what long term action might look like? Marion Leaman: So for long term action, we really want to start advocating at an administrative level, to be given a little bit of time, it doesn't even have to be a lot of time, to begin training facility wide staff. And when I talk about facility wide, I'm including everybody who interacts with that patient. So it can include housekeeping staff, secretarial staff, everybody can make a difference in the lives of the people who are residents in the skilled nursing facility. Marion, you also emphasize both the importance of interprofessional practice in improving communication culture, and the role of the SLP in incorporating experiential learning about social isolation into their communication partner training. Can you give an example of how you might do this? Marion Leaman   Sure, experiential learning is really based on the premise that when we experience something firsthand, we better learn the information and can better apply it throughout our lives. So the idea in this paper was that many of us now have experienced social isolation at a level that's never been seen before. So if we have staff, even in a brief 20 minute training, reflect on their own experiences of isolation during the COVID pandemic, and what that felt like--why it was hard, and then supporting those staff people to connect these personal feelings of social isolation to the experiences of social isolation experienced by people in skilled nursing facilities who have communication disorders. This can open the door for more empathy and understanding and help all of the staff understand the critical importance of learning how to create social connections for the residents. Thank you, I was so really impressed with that article, the reference will be in our show notes for our listeners. Thank you for sharing that with us.  I really want to shift now to your work that explores the value of conversation as a clinical goal. In fact, when we were preparing where we would head with this interview, you told me, “Conversation, that's what I'm all about.” How do you connect this to a Life Participation framework? Marion Leaman   How is conversation anything but a life participation framework? It's the primary way that every single one of us participates with other people in our everyday lives all day, every day. In my mind, it's absolutely critical to our lives. It's essential to participate in connecting with others. I always try to remember that I need to share that my concept of conversation is perhaps a little bit broader than that of other people. I want to remark that conversation for me is all of the communication and interaction that occur between two people, and it doesn't depend on language at all, as you could even see in the story I told about the gentleman with the hearing aids, that was really a nonverbal conversation. In talking about conversation and how we may take what we understand about that for granted.  We may not be as aware of all the factors that are involved with it. You shared with me a story about one of the first graduate students you supervised as a clinical instructor. Could you share the question he asked you before starting his therapy session? I think it's really illustrative. Marion Leaman:  Yeah, well, this is one that stuck with me for about 12 or 14 years at this point. But I had this absolutely terrific student. He was enthusiastic and nervous about his first session with a client in our university clinic. And this gentleman happened to have a very severe nonfluent aphasia. I shared my approach with the student for using conversation as a medium of therapy. I just have never forgotten this question he asked right before he entered the session. He said to me, “How do you have a conversation with someone who can't talk? And I thought it was a great question. But honestly, it had never even occurred to me before, which is probably why I've remembered at all these years, because I have conversations with people who can't talk all the time. And his question reminded me of the need to be explicit when talking about conversation, to make it clear that conversation encompasses and occurs through many different and complementary nonverbal and verbal channels. You explained that you had originally planned to do your doctoral research on conversation therapy, something that you've really embraced and pursued across the years, but you had to make a really hard decision to select another starting point, what did you decide had to come first, and why? Marion Leaman: So throughout my more than 20 years of practice, people with aphasia have taught me how to deliver therapy through conversation. As a clinician, I learned that such an intervention can drive change in many aspects of communication, including language production. But what I realized really quickly when I began my PhD, is that to demonstrate these changes, we need reliable and stable measures of language and conversation,  Marion, since we want to put success in conversation as a high clinical value across all aphasia severity levels, tell us a little bit about how we currently assess conversation.  Marion Leaman: So when I started my PhD, we already had some really nice strong measures of participation, and ways to measure patient reported outcomes, and we could also measure efficacy of strategy use. But at that time, there were no measures of language production in conversation. Instead, typically, when we measure language at a discourse level, we tend to use a picture description tasks such as the Western Aphasia Battery picnic scene.  However, those kinds of tasks are really quite different than conversation and so they may not provide the information we need that's specific to what's actually going on in conversation for people with aphasia. When I began my PhD, there was no possible way to demonstrate that any intervention, either the one I had in mind or any other intervention would have impact on language production in conversation. I set out to determine if measuring language and conversation was even feasible, so that we could show real world impact of our current and future interventions on conversation because it's usually the desired outcome for most people. As it turned out, of course, that first year PhD project was much larger than I'd expected. I ended up spending the last six years developing language measures for conversation. In searching for tools that allowed you to measure conversation in life participation contexts, you develop the Social Conversation Collection Protocol, which I think you call the SCCP. Do you want to describe this for the listeners?  Marion Leaman:  One of the challenges with measuring what happens in real world conversation is that anything can happen. Further complicating things, there are all different kinds of interactions that get described as conversation. For instance, there are interviews, there are conversations where the topic is already pre-determined and there are spontaneous social conversations, just to name a few. The problem with all of this is that the language behavior and interaction are very likely to be restricted or encouraged in different ways in these different subtypes of conversations. Because my interest was in measuring language in unstructured social conversations, I developed this Social Conversation Collection Protocol as a way to optimize the likelihood that all of the conversation samples used for assessment purposes would have this in common. I developed this protocol using what we know about how adults interact with each other in social conversations, largely coming out of the conversation analysis literature in people without aphasia. As I start to talk about this protocol, I'd be absolutely remiss not to mention the contributions to my thinking about this that came from my PhD mentor, Lisa Edmonds, and from my dissertation committee member and mentor, Julie Hengst, that have been really important for developing this protocol. Marion, let me just jump in briefly. When we were preparing for this last week, you mentioned there was another mentor that really had impactful influence on your thinking about this. Do you want to mention one more person? Marion Leaman: Absolutely. I need to give a shout out to Gloria Olness, who has been a tremendous and generous mentor to me since the day I met her in 2017. She's contributed to so much of my thinking, most especially about the importance of personal narrative in the therapeutic process and how we can support opportunities for storytelling in therapy. But that's a whole other subject I'd love to talk about one day.  Absolutely. Let's get back then to the SCCP.  Marion Leaman: Some key features of the Social Conversation Collection Protocol are the very same kinds of features we find in conversations between adults without communication disorders. For instance, we know from Conversation Analysis that there is a preference for all of us to correct our own speaking errors. We don't go around correcting one another, typically. In this protocol, the person with aphasia is also given unpressured time to self-correct their errors. Likewise, adults don't instruct each other as to how to communicate, we all make those decisions for ourselves. So we don't instruct people how to communicate, whether they use writing or gestures or verbal. Likewise, adults don't cue each other, so we don't use cueing (in the protocol).  Along with all of this, I want to be sure to highlight that the person with aphasia is given as much time as they need to communicate, just as adults without communication disorders tend to do what with one another, although delays for self-expression during communication are, of course, much, much shorter for people who don't have communication disorders. And so lastly, in social conversations, both people tend to share of themselves by telling little stories, and there's not usually a control of the topic or a controlled yes no question kind of format. So these are the kinds of characteristics we emulate in this Social Collection Protocol.  So when conversation is being assessed, as clinicians, we really want to be sure that our pre- and post-treatment conversations are as similar to one another in these ways as possible, even though the topics will differ because there are unstructured social conversations. So if we don't use a tool like the Social Conversation Collection Protocol, and instead base our assessments using conversations in which clinicians provide different amounts of cueing or supportive techniques, or in which the clinician controls the topic, asks a lot of closed ended questions, or conversely, engages in conversations in which the clinician only says yes or no, what we end up doing with all those different kinds of conversations, or conversation samples, is introducing a whole lot of potential variability to the sample that's actually really related to the behavior of the partner. And so this would make it potentially really difficult to compare one conversation to another. Marion, you've published a series of articles based on this doctoral research. And there's another paper coming out in JSHR soon that you co-authored with Lisa Edmonds on assessing conversation, narrative, and aphasia. It offers a really careful description of the core measures that you use to analyze conversation. We're going to put the references all in the show notes.  Can you please briefly summarize a couple key outcomes of your doctoral research, and maybe even give a nod towards any surprises or disappointments, because that happens. Marion Leaman: There's always a few of those in a dissertation. Using the SCCP that we just talked about to collect conversations, we found that language and conversation can indeed be measured. For most of the measures that we evaluated, there was good to excellent reliability and stability. Just to give a quick list of the kinds of measures we looked at, some of them were the complete utterance, correct information units, global coherence, communicative success, and grammaticality.  My surprise and disappointment was that one measure, a measure of referential cohesion, in other words, the ability to use pronouns accurately to specify nouns, really wasn't stable at all. And we found this across two different studies with two different sets of participants. As I spent time thinking more and more about this, my surprise did lesson, because using pronouns is actually a really interactional language structure. If the person with aphasia uses an empty pronoun, the way they often do, such as “it”, and the partner happens to provide a noun, suddenly the “it” is no longer empty.  So the measure of this pronoun usage was unstable for a number of reasons. But this really was one of them-- that some partners provided a lot of nouns to clarify the empty pronouns and others did not. And so that made the measure unstable. Finding this finding actually really disappointed me quite a lot, as Lisa Edmonds can attest to. Although pronouns are seemingly a very small grammatical structure, and they might appear to be quite unimportant, my experience as a clinician doing a lot of conversationally focused therapy was that when people with aphasia use vague pronouns, it oftentimes can contribute to derailing the conversation significantly, especially if the person is trying to tell a story, or tell about something like their family history. I'd really hoped to find a way to measure this, so that when we address it in therapy, we can demonstrate change.  A positive aspect came out of this disappointment, however, and that was that we also collected data from people without aphasia, and we found that they very, very, very rarely ever make pronoun errors like this, it was something like three errors out of 2500 occurrences. It was like .003 or something. So we now have research that will be published in the article you mentioned, showing that these kinds of pronoun errors can warrant treatment if the person with aphasia wants to address that, because the errors do reflect the impact of aphasia, and they're not just part of a typical day to day fluctuation.  And then the other important finding I want to share with you, is that for the most of those measures that we looked at, the language that was produced in a story monologue using a picture book, so sort of like those picture descriptions we were talking about earlier, although I use picture books. So it was more complex. The measures were not highly correlated between the language in a picture task and the language in conversation.  That finding really suggested to me that if our interest is in changing language through therapy, as it's used in conversation, then what we really need to be doing for at least as part of our evaluation, is evaluating conversation. We really can't use proxies, such as structured picture monologue, to learn about all of the conversational treatment needs of people with aphasia. These kinds of picture tasks also can't be assumed to capture post-treatment change or gains that may be occurring in conversation, because the kind of language that's used in conversation, for most measures, is not similar to the kind of language used in at least that picture story tasks that we evaluated. Those are two brief findings, but they were long.  I think you did a phenomenal job of trying to cover six years of research in this short response. But I just want to comment that it seems to me that it proves that your decision to study these measures first, instead of doing what you want it to do, really paid off, because it's going to hopefully impact some of the tools and some of the ways we think about measuring conversation and outcomes that are meaningful for our clients. I really thank you for digging in like that, and trying to explore and establish these base measures. So really meaningful work, Marion, thank you. Marion Leaman:  Thank you. I really appreciate it. And I really did think I was going to finish it in about six months. As we wrap up this conversation, do you want to give a brief description of Conversation Therapy? I know, that's your next piece of research. Marion Leaman: I'm really, as you could imagine, very excited, I'm just getting this under way, actually. I have my first participant coming in less than two weeks for the Conversation Therapy. It makes use of spontaneous conversational interactions, using many of the principles of that Social Conversation Collection Protocol that we talked about in detail today, as well as some techniques for repair, that optimize independent self-expression for the person with aphasia. So not over helping them. We really believe that this kind of therapeutic self-repair, when those moments happen, word retrieval difficulty, can be really helpful for people and have some generalization, hopefully, come out of that. So we'll look forward to that. And maybe in a future podcast, a follow-up on that research.  Marion Leaman: Hopefully, it won't be six years from now. Absolutely. You've done the hard work of establishing your measures. Hopefully, this next chunk will be even more fun. Marion, I'm going to just close the interview today, not only thanking you, because I so appreciate this conversation, but I'm wondering if you could just reflect on if you had to pick just one thing that we need to achieve urgently as a community of providers, professionals, life participation practitioners, what would, what would that one thing be?   Marion Leaman: That's a hard question. So, for me, I really passionately believe that we quite urgently, every single one of us as speech pathologists and researchers and clinicians, need to ensure that the interventions that we're choosing to deliver, meet the real world communication needs of the person. And that conversation moves from around the edges of intervention to front and center. And I always think of a quote from Audrey Holland that was so eloquently stated in one of her journal articles about 25 years ago, was that conversation is not something we do before or after therapy. Conversation is the very reason for therapy. Thank you. Well, you quoted one of my favorite mentors.  Marion Leaman: And mine too.  Absolutely great way to close this wonderful interview and conversation about conversation, Marion. Thank you again for being our guest for this podcast. Marion Leaman: Thank you so much. And thank you for inviting me here. It's wonderful to have the opportunity to share some of these ideas in my research with you and with the audience at large. I really appreciate it. Absolutely. It was our pleasure, my pleasure. For more information on Aphasia Access, and to access our growing library of materials, go to www.aphasia access.org and if you have an idea for a future Podcast Series topic, email us at info@aphasiaaccess.org and thanks again for your ongoing support of Aphasia Access. On behalf of Aphasia Access, we thank you for listening to this episode of The Aphasia Access Aphasia Conversations podcast. For more information on Aphasia Access, and to access our growing library of materials, go to www dot aphasia access.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. References and Resources  Généreux, S., Julien, M., Larfeuil, C., Lavoie, V., Soucy, O., & Le Dorze, G. (2004). Using communication plans to facilitate interactions with communication-impaired persons residing in long-term care institutions. Aphasiology, 18(12), 1161-1175. Leaman, M. C. (2020). Establishing Psychometrically-Sound Measures of Linguistic Skills in People With and Without Aphasia During Unstructured Conversation and Structured Narrative Monologue (Doctoral dissertation, Teachers College, Columbia University). Leaman, M. C., & Azios, J. H. (2021). Experiences of social distancing during coronavirus disease 2019 as a catalyst for changing long-term care culture. American Journal of Speech-Language Pathology, 30(1), 318-323. https://pubs.asha.org/doi/pdf/10.1044/2020_AJSLP-20-00176 Leaman, M. C., & Edmonds, L. A. (2021). Measuring global coherence in people with aphasia during unstructured conversation. American journal of speech-language pathology, 30(1S), 359-375. Leaman, M. C., & Edmonds, L. A. (2020). “By the way”… How people with aphasia and their communication partners initiate new topics of conversation. American journal of speech-language pathology, 29(1S), 375-392. Leaman, M. C., & Edmonds, L. A. (2019). Revisiting the Correct Information Unit: Measuring informativeness in unstructured conversations in people with aphasia. American journal of speech-language pathology, 28(3), 1099-1114. Leaman, M. C., & Edmonds, L. A. (2019). Linguistic measures of conversation in aphasia: The Global Coherence Scale and The Complete Utterance. In Poster presentation at the Clinical Aphasiology Conference, Whitefish, Montana. Leaman, M. C., & Edmonds, L. A.  (2018) Measuring Informativeness in Conversation Using Correct Information Units (CIUs) in People with Aphasia. In Poster presentation at the Academy of Aphasia Conference, Montreal, QC. Page, C. G., Marshall, R. C., Howell, D., & Rowles, G. D. (2018). Use of communication plans by certified nursing assistants: Little things mean a lot. Aphasiology, 32(5), 559-577. Simmons-Mackie, N. (2018). Aphasia in North America: A white paper. Archives of Physical Medicine and Rehabilitation, 99(10), E117. https://doi.org/10.1016/j.apmr.2018.07.417 Simmons-Mackie, N., & Cherney, L. R. (2018). Aphasia in North America: highlights of a white paper. Archives of Physical Medicine and Rehabilitation, 99(10), e117.

Ali Berquez, MSc, PG Dip CT (Oxon), BRIEF Cert. SF Practice, Clinical Lead for Children at the Michael Palin Centre for Stammering in London, UK, joins Sara MacIntyre, M.A., CCC-SLP to discuss the process of desensitization for parents of children who stutter. This discussion is based on a paper in AJSLP from 2018 written by Ali Berquez and Elaine Kelman, "Methods in Stuttering Therapy for Desensitizing Parents of Children Who Stutter." Desensitization is typically discussed in relation to working with individuals who stutter themselves; however, Ali shares how critical it is to incorporating desensitization work with parents as well.  Ali shares clinical activity examples, rationales, antidotes, stories, and more!Links mentioned during episode:Michael Palin Centre Training OpportunitiesStuttering Foundation Course with Elaine Kelman and Ali BerquezStambassadorsBio: Ali Berquez is Clinical Lead for Children at the Michael Palin Centre for Stammering in London, UK, where she has worked since 2000. Her role includes working with clients of all ages including adults who stutter; teaching nationally and internationally (including the Stuttering Foundation’s annual Eastern Workshop in Boston), writing, offering clinical supervision and contributing to research projects. She has collaborated with Professor Patricia Zebrowski and her team in the USA over the past few years to explore the expectations of young people and parents from therapy using Solution Focused principles. Ali is a Study Day Coordinator for the UK’s National Clinical Excellence Network in Dysfluency and a certified European Fluency Specialist. 

Michael, Matt, and Michelle did a live Facebook test before this week's episode to identify doing future shows live!    Mike and his newborn experienced her first round of shots this week and the impact of being a father and a therapist.  Michelle ramps back up for therapy in a new state.  Matt looks at his last 33 days of school therapy and any missed therapy sessions.  A question was posed on the Discord if all schools take comprehensive exams, the crew discusses their experience with “comps.”            On today's show, we look at graduate program looking at a neurodiversity specialty, we look at the comparison between pictures and pictures with text for AAC users, a look at ASHA, the Informed SLP tells us about a new tool for dysphagia and FEES, and the Speech News Headlines.   Michelle sat down with Craig Goldslager of Utterly Financial and looks at what SLPs need to know financially.      The Discord is up and ready for people to interact with the crew 24/7 with a new website, www.discord.speechsciencepodcast.com. ----more---- SSPOD Shoutout: Do you know an SLP who deserves a digital fist bump or shout out?  We want to know your #SSPODSHOUTOUT, which is recognition for someone doing something awesome somewhere.  SSPOD Due Process: Your opportunity to message us about a problem in your area that you would like us to talk about, use the #SSPODDUEPROCESS.    Topic #1:  Kean University has recently offered a new program to allow for graduate students to specialize in neurodiversity.  As our profession continues to look at a clinical doctorate, should all programs look to offer more specialization?   Topic 2: Should an AAC device have text or pictures or both?  A recent small introductory study looked at the generalization of both and which may be best for AAC users.           The Informed SLP: There's a promising new tool for you to objectively measure pharyngeal retention on your studies that's easy to learn and use.   Interview: Michelle sat down with Craig Goldslager of Utterly Financial and looks at what SLPs need to know financially.   Craig takes a deep dive into the financial needs of SLPs and he speaks from experience, his wife is an SLP.  Craig is launching his own Podcast to look at the financial sides of being a therapist.     Contact Email: speechsciencepodcast@gmail.com Voicemail: (614) 681-1798 Discord: https://discord.speechsciencepodcast.com Speech Science Stuff: http://merchandise.speechsciencepodcast.com/   New Episode and Interact here: www.speechsciencepodcast.com podcast.speechsciencepodcast.com   Support Patreon – https://www.patreon.com/speechsciencepodcast   Rate and Review: https://podcasts.apple.com/us/podcast/speechscience-org-podcast/id1224862476?fbclid=IwAR3QRzd5K4J-eS2SUGBK1CyIUvoDrhu8Gr4SqskNkCDVUJyk5It3sa26k3Y&ign-mpt=uo%3D8&mt=2   Credits Intro Music: Please Listen Carefully by Jahzzar is licensed under a Attribution-ShareAlike License. Bump Music: County Fair Rock, copyright of John Deku, at soundcloud.com/dirtdogmusic The Informed SLP: At The Count by Broke For Free is licensed under a Creative Commons Attribution License Closing Music: Slow Burn by Kevin MacLeod is licensed under a Creative Commons Attribution License.   Show Links   The Informed SLP: https://www.theinformedslpmembers.com/reviews-adults/theres-a-new-tool-in-town-the-mansoura-fees-residue-rating-scale-1 https://www.karger.com/Article/Abstract/512158   Neurodiversity Programming https://leader.pubs.asha.org/do/10.1044/leader.AE.26042021.30/full/?fbclid=IwAR0Ab2DV3IfOz7bY0ifySNxmNqo94lEKMvZN09lkZ2XNmSHNhTICXE9KfkA   AAC and Text https://pubs.asha.org/doi/10.1044/2020_AJSLP-20-00099?fbclid=IwAR2Z_fHYFBfsdTzuewiQjnyYupp8ghP2o8JZz3SgnAUz-JbGVcHGhBcllGw   Utterly Financial https://utterlyfinancial.com/     Speech Science Powered by: You!  

Michael, Matt, and Michelle are back together for the show.  Michelle returns from her trip to Texas and returns as a homeowner!  Michael is loving being a new father, except for his sleep pattern.  Matt took advantage of his Spring Break and got work done around the home he needed to complete.             On today's show, we reimagine what special education should look like, a look at the ASHA PAC, the Informed SLP looks at Social Media and TBI, and the Speech News Headlines.       The Discord is up and ready for people to interact with the crew 24/7 with a new website, www.discord.speechsciencepodcast.com. ----more---- SSPOD Shoutout: Do you know an SLP who deserves a digital fist bump or shout out?  We want to know your #SSPODSHOUTOUT, which is recognition for someone doing something awesome somewhere.  SSPOD Due Process: Your opportunity to message us about a problem in your area that you would like us to talk about, use the #SSPODDUEPROCESS.    Topic #1: We have witnessed a dramatic shift in Special Education over the course of the last 12 months. Should we take this opportunity to reimagine and change the way we look at our services?        Topic 2: Why doesn't ASHA do more for us?  Legally they can only do so much, and this is where the ASHA PAC comes into the conversation.  How much did the PAC raise last year?  The number will be surprising and disappointing.         The Informed SLP: we know that written communication can be easily misinterpreted because it's lacking tone, body language, and context. Add in social communication deficits (like people with Traumatic Brain Injuries (TBI) often have, for example) and social media can become a source of stress instead of connection.     Contact Email: speechsciencepodcast@gmail.com Voicemail: (614) 681-1798 Discord: https://discord.speechsciencepodcast.com Speech Science Stuff: http://merchandise.speechsciencepodcast.com/   New Episode and Interact here: www.speechsciencepodcast.com podcast.speechsciencepodcast.com   Support Patreon – https://www.patreon.com/speechsciencepodcast   Rate and Review: https://podcasts.apple.com/us/podcast/speechscience-org-podcast/id1224862476?fbclid=IwAR3QRzd5K4J-eS2SUGBK1CyIUvoDrhu8Gr4SqskNkCDVUJyk5It3sa26k3Y&ign-mpt=uo%3D8&mt=2   Credits Intro Music: Please Listen Carefully by Jahzzar is licensed under a Attribution-ShareAlike License. Bump Music: County Fair Rock, copyright of John Deku, at soundcloud.com/dirtdogmusic The Informed SLP: At The Count by Broke For Free is licensed under a Creative Commons Attribution License Closing Music: Slow Burn by Kevin MacLeod is licensed under a Creative Commons Attribution License.   Show Links   The Informed SLP: https://www.theinformedslpmembers.com/reviews-adults/tweeting-into-the-future https://pubs.asha.org/doi/10.1044/2020_AJSLP-20-00211   ASHA PAC https://www.asha.org/siteassets/uploadedfiles/advocacy/pac/2020-asha-pac-report.pdf?fbclid=IwAR0Bg212f10YYoSFCCOEPyXE3L2BcCCubY17BffgHPaDS1MUMYEMqmf8ZfA Reimagining Special Education https://www.disabilityscoop.com/2021/02/04/is-pandemic-chance-reimagine-special-education/29180/?fbclid=IwAR1boAkjz4AuMwCQDKMVo-jdIlv-LTiKgbYfs9FwnPb163j3-kDPkiHoJ-o         Speech Science Powered by: You!  

Get .1 ASHA CEU hereEpisode Summary:How prevalent is CAS REALLY? Is it true that CAS is the most over-diagnosed of the speech sound disorders? How does treatment for motor speech challenges differ from “traditional” arctic treatment? The Nerd crew doesn't dance around these hot topics in this week's episode, although there is a catchy Kate jingle to start things off. Before you dive in, you might want to listen to a previous episode (Maybe it's Apraxia?: diagnostic considerations for childhood apraxia of speech) for a refresher on important diagnostic stuff to help set the stage for “...hitting the sweet spot in your [CAS intervention] dance”. Mike Bright is an SLP in the Boston area currently supporting kids with motor speech challenges in a private practice setting after more than a decade at Boston Children's Hospital. Mike has us digging deep into the grad school motor speech caverns of our brains to recall those sound intervention principles like mass vs distributed practice and constant vs variable practice. Even with so much jargon floating around, this practical discussion provides a child-centered and movement-centered lens from which to approach this complicated clinical niche, and has some awesome tips to keep drill sessions rooted in motor learning, client interests, and FUN! That's right, fun drill-who doesn't need some advice on making drills fun? Tune in and learn about the role of prevalence in clinical perspective-taking when supporting kids who struggle with hard to understand speech. You'll also dance away with some solid “stock” and individualized ideas for materials and strategies that go beyond your K-SLP Kit, but still to hold research evidence and motor learning principles at their core. You'll no doubt walk away with some big ah-ha moments because “When you look at it through the lens of movement, it makes so much sense!” You can learn more about Mike here.Learning Outcomes1. Describe the prevalence of childhood apraxia of speech?2. Describe three considerations for target selection for children with CAS.3. Describe five ways to vary speech production practice that support motor learning.ReferencesMaas, E., Gildersleeve-Neumann, C.E., Jakielski, K.J. et al. Motor-Based Intervention Protocols in Treatment of Childhood Apraxia of Speech (CAS). Current Developmental Disorders Reports. 1, 197–206 (2014). https://doi.org/10.1007/s40474-014-0016-4Maas, E., Gildersleeve-Neumann, C., Jakielski, K., Kovacs, N., Stoeckel, R., Vradelis, H., & Welsh, M. (2019). Bang for Your Buck: A Single-Case Experimental Design Study of Practice Amount and Distribution in Treatment for Childhood Apraxia of Speech. Journal of Speech, Language, and Hearing Research, 62(9), 3160-3182. doi:10.1044/2019_jslhr-s-18-0212Murray, E., McCabe, P., & Ballard, K.J. (2014). A Systematic Review of Treatment Outcomes for Children With Childhood Apraxia of Speech. American Journal of Speech-Language Pathology, 23, 486–504. https://doi.org/10.1044/2014_AJSLP-13-0035Online Resources:Integral Stimulation: https://www.apraxia-kids.org/apraxia_kids_library/integral-stimulation-method-adapted-for-children-as-dttc/The PROMPT Institute: https://promptinstitute.com/page/WIPforClincianDynamic Temporal and Tactile Cueing: A Treatment Strategy for Childhood Apraxia of SpeechPrinciples of Motor Learning in Treatment of Motor Speech DisordersA Systematic Review of Treatment Outcomes for Children With Childhood Apraxia of SpeechInterventions for childhood apraxia of speechA Randomized Controlled Trial for Children With Childhood Apraxia of Speech Comparing Rapid Syllable Transition Treatment and the Nuffield Dyspraxia Programme–Third EditionTreating Speech Subsystems in Childhood Apraxia of Speech With Tactual Input: The PROMPT ApproachFeedback Frequency in Treatment for Childhood Apraxia of SpeechUltrasound Biofeedback Treatment for Persisting Childhood Apraxia of SpeechREST - Rapid Syllable Transition Treatment: A free self directed learning resource for speech pathologists to learn how to deliver ReST treatment to children with Childhood Apraxia of Speech (CAS) and information for parents and the general community. https://rest.sydney.edu.au/CAS Treatment Methods Supported by Evidence Based Research: This website has different Evidence Based methods and free resources for parents and free videos and learning content for clinicians. https://www.childapraxiatreatment.org/cas-treatment-supported-by-research-evidence/Episode Key Terms and Additional InformationDefinitions were obtained through the ASHA website. Under Childhood Apraxia. https://www.asha.org/practice-portal/clinical-topics/childhood-apraxia-of-speech/#collapse_6Sensory Cueing approach: Treatments that include sensory input (e.g., visual, auditory, proprioceptive and/or tactile cues) to teach the movement sequences for speech. Sensory cues can be used separately or in combination. PROMPT: PROMPT is an acronym for Prompts for Restructuring Oral Muscular Phonetic Targets. The technique is a tactile-kinesthetic approach that uses touch cues to a patient's articulators (jaw, tongue, lips) to manually guide them through a targeted word, phrase or sentence. Integral Stimulation: This is a treatment method that involves imitation, and emphasizes both visual and auditory models. It requires a person to imitate utterances modeled by the clinician. Attention is focused both on the auditory model as well as visual attention to the clinician's face. It is often considered the “watch me, listen, do as I do” approach.Dynamic Temporal and Tactile Cueing (DTTC): This approach is like Integral Stimulation the only difference is that it adds layers of cueing to improve children's production accuracy.Biofeedback: This refers to the use of visual information to report on how sound productions are physically made. Biofeedback provides "knowledge of performance", which provides information about the persons' actual movement of speech sound targets. This can be demonstrated through several means, the most popular are through ultrasounds and electropalatography. Childhood apraxia of speech: Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is due to brain having planning problems to move speech parts like the lips, jaw, tongue. Therefore, the issue is not muscle weakness or paralysis instead, the child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say the words. Disclosures:Mike Bright Financial Disclosures: Mike is the owner of Bright Speech and Language, LLC. Mike Bright Non-financial: "Recognized by Apraxia Kids for Advanced Training and Expertise in Childhood Apraxia of Speech"Kate Grandbois financial disclosures: Kate is the owner / founder of Grandbois Therapy + Consulting, LLC and co-founder of SLP Nerdcast. Kate Grandbois non-financial disclosures: Kate is a member of ASHA, SIG 12, and serves on the AAC Advisory Group for Massachusetts Advocates for Children. She is also a member of the Berkshire Association for Behavior Analysis and Therapy (BABAT), MassABA, the Association for Behavior Analysis International (ABAI) and the corresponding Speech Pathology and Applied Behavior Analysis SIG. Amy Wonkka financial disclosures: Amy is an employee of a public school system and co-founder for SLP Nerdcast. Amy Wonkka non-financial disclosures: Amy is a member of ASHA, SIG 12, and serves on the AAC Advisory Group for Massachusetts Advocates for Children. Time Ordered Agenda:10 minutes: Introduction, Disclaimers and Disclosures20 minutes: Descriptions of the prevalence of childhood apraxia of speech 15 minutes: Descriptions of considerations for target selection for children with CAS 10 minutes: Descriptions of ways to vary speech production practice that support motor learning 5 minutes: Summary and ClosingDisclaimerThe contents of this episode are not meant to replace clinical advice. SLP Nerdcast, its hosts and guests do not represent or endorse specific products or procedures mentioned during our episodes unless otherwise stated. We are NOT PhDs, but we do research our material. We do our best to provide a thorough review and fair representation of each topic that we tackle. That being said, it is always likely that there is an article we've missed, or another perspective that isn't shared. If you have something to add to the conversation, please email us! Wed love to hear from you!__Summary Written by Tanna Neufeld, MS, CCC-SLP, Contributing EditorKey Terms and Additional Information provided by Maria De Leon, MS, CCC-SLP, Contributing EditorAudio File Editing provided by Caitlan Akier, MA, CCC-SLP/L, Contributing EditorPromotional Content provided by Ashley Sturgis, MA, CCC-SLP, Contributing Editor Web Editing provided by Sinead Rogazzo, MS, CCC-SLP, Contributing EditorSLP Nerdcast is a podcast for busy SLPs and teachers who need ASHA continuing education credits, CMHs, or professional development. We do the reading so you don't have to! Leave us a review if you feel so inclined!We love hearing from our listeners. Email us at info@slpnerdcast.com anytime! You can find our complaint policy here. You can also:Follow us on instagramFollow us on facebookWe are thrilled to be listed in the Top 25 SLP Podcasts!Thank you FeedSpot!

Matt announces on air that he would officially like to go back to school to get his principal's licensure to pursue his dream job in the schools.  He took his boys to learn tennis and is putting the speech schedule together.  Michelle continues to unpack and has joined an outdoor socially distant workout group.  Michael visited Ricketts Glenn State Park in Pennsylvania.           On today's show, we discuss the telehealth company that was fined for not being truthful in its ads and we talk about the importance of caregivers perceptions of SLPs, what we do in therapy, and we react to the headlines in the news involving a Gucci's new model with Down Syndrom, dysfluency and Gabby Giffords at the DNC, and Target has new accessible Halloween costumes.  Matt sat down Dr. Givona Sandiford to talk about her Health and Fitness Journey.  This week's Informed SLP looks at the role parents play in ASD diagnosis.  We also look at our SSPOD Shoutouts and Due Process.  The ASHA spotlight looks at what ASHA is doing to improve funding and prep for SLPs in the schools.    The Discord is up and ready for people to interact with the crew 24/7 with a new website, www.discord.speechsciencepodcast.com.   ----more---- SSPOD Shoutout: Do you know an SLP who deserves a digital fist bump or shout out?  We want to know your #SSPODSHOUTOUT, which is recognition for someone doing something awesome somewhere.  Dr. Givona Sandiford deserves this week's SSPODshoutout.  Dr. Sandiford is in the running the to be Ms Health and Fitness.  Matt talks with her during the show's interview segment as well.          SSPOD Due Process:  Do you have a complaint or need to vent, then you want to participate in the #SSPODDUEPROCESS. This week, an anonymous listener sends in the following situation.  The ESY services provided to one of her students was done by a non-SLP and the district does not want to inform the family.  What should they do?   Topic #1:    PresenseLearning settled with the California Government for $600,000 related to making false claims about the effectiveness of their therapy.  Families across the country have already raised concerns about their students not being served correctly; how do we ensure that our students that receive teletherapy would benefit from it.      Topic #2: Caregivers value clear and direct information from their SLPs, but we as a field are not always clear.  What is the importance in using clear and defined terms when speaking to parents.    Interview: Matt spoke with Dr. Givona Sandiford about her health journey following the birth of her child.  She is in the running for Ms Health and Fitness and can be on the cover of Muscle and Fitness: Hers.   The Informed SLP: Parents can effectively participate in early screenings for ASD via telepractice.  The Informed SLP looks at the research associated with this.    ASHA Spotlight: We look at what ASHA is doing to advocate for safety, telepractice, increased funding, and flexibility for the upcoming 2020–2021 school year.   Contact Email: speechsciencepodcast@gmail.com Voicemail: (614) 681-1798 Discord: https://discord.speechsciencepodcast.com   New Episode and Interact here: www.speechsciencepodcast.com podcast.speechsciencepodcast.com   Support Patreon – https://www.patreon.com/speechsciencepodcast   Rate and Review: https://podcasts.apple.com/us/podcast/speechscience-org-podcast/id1224862476?fbclid=IwAR3QRzd5K4J-eS2SUGBK1CyIUvoDrhu8Gr4SqskNkCDVUJyk5It3sa26k3Y&ign-mpt=uo%3D8&mt=2   Credits Intro Music: Please Listen Carefully by Jahzzar is licensed under a Attribution-ShareAlike License. Bump Music: County Fair Rock, copyright of John Deku, at soundcloud.com/dirtdogmusic The Informed SLP: At The Count by Broke For Free is licensed under a Creative Commons Attribution License Closing Music: Slow Burn by Kevin MacLeod is licensed under a Creative Commons Attribution License.   Show Links   The Informed SLP: https://www.theinformedslpmembers.com/ei-reviews/parents-as-partners-in-screening-for-asd-via-teletherapy https://link.springer.com/article/10.1007/s10803-020-04554-9   Ms Health and Fitness – Vote Here https://mshealthandfitness.com/2020/givona-sapp?fbclid=IwAR0eA8uZm9d9S1PhK6hIJ_tObUxxa2-FICGa8I6eS62jlpAAZ7lSxmGSGdQ  https://mshealthandfitness.com/   PresenceLearning and Teletherapy https://everythingslp.com/breaking-news/60000-telepractice-court-settlement-in-ca-government-overreach-or-valid-consumer-protection?fbclid=IwAR3_6itgkDIOvj_xZIYNG3IPOtPfOc3scbi5sZn8RLibiEBG6QjkFqzR0-s https://www.presencelearning.com/ https://www.azcentral.com/story/news/local/arizona-education/2020/08/29/arizona-parents-children-autism-school-mask-mandates-coronavirus/3443571001/ https://wchstv.com/news/local/family-with-special-needs-child-says-remote-learning-does-not-work-for-them   Caregiver Perspectives https://pubs.asha.org/doi/10.1044/2020_AJSLP-20-00049  http://paetc.org/wp-content/uploads/2014/07/AIDET-Training-Presentation1.pdf   Headlines: https://www.mirror.co.uk/news/uk-news/model-downs-syndrome-written-medics-22598147 https://www.usnews.com/news/health-news/articles/2020-08-28/teens-democratic-convention-speech-brings-awareness-to-stuttering https://www.cnn.com/2020/08/19/politics/gabby-giffords-recovery-resilience-dnc/index.html https://www.facebook.com/111301397172268/posts/173699284265812/?extid=mNrCSiV47BizhPHn&d=n   ASHA Advocacy https://www.asha.org/practice/multicultural/ Speech Science Powered by: You!

Michael and Michelle have the week off, so Leigh Ann Porter, host of Speech Uncensored settles into the co-host chair this week with Matt.  Leigh Ann recounts her week in the clinical setting and the joy of seeing a patient returning to your caseload.  Matt's home health caseload continues to rise which means his free time continues to decrease.  Matt and Leigh Ann discuss the tests they enjoy when working with adults.  In the middle of the show, Matt had to run down a mouse in his house!   On today's show, we look at tools for dysphagia, the importance of counseling during therapy, and which states are failing IDEA.  This week's Informed SLP looks at perceptual ratings for dysarthric speech.  We also look at our SSPOD Shoutouts and Due Process.  The ASHA spotlight looks at the ASHA Connect Conference.     The Discord is up and ready for people to interact with the crew 24/7 with a new website, www.discord.speechsciencepodcast.com.  ----more---- SSPOD Shoutout: Do you know an SLP who deserves a digital fist bump or shout out?  We want to know your #SSPODSHOUTOUT, which is recognition for someone doing something awesome somewhere.    Dr. Anthony Koutsoftas from Seton Hall University received a 1.4 million dollar federal grant for research in improving writing skills in special education.    SSPOD Due Process:  Do you have a complaint or need to vent, then you want to participate in the #SSPODDUEPROCESS.    Topic #1: With the rise of 3d printing companies have found ways to create new assistive tools for feeding therapy.  Obi a robot who can feed a patient to trays specially designed can help change our approach to feeding therapies.         Topic #2: A majority of states are failing to meet the minimum of IDEA.  Why are schools failing?  Is it directly linked to funding and will it improve anytime soon?         Topic #3: Counseling should be a bigger part of our therapy sessions, or so says a recent study.  Do you find yourself as an information counselor or one that helps identify our patients' wants and needs?           The Informed SLP: A downside to relying on perceptual ratings is that perceptual ratings alone don't usually qualify a child for speech services or provide a normative benchmark (other than normal/abnormal). But the authors of this study have created age-specific norms and cut-off scores for perceptual ratings that can be used in dysarthria assessments of school-aged children.   ASHA Spotlight: The ASHA Connect Conference is up and online till July 20th.    Contact Email: speechsciencepodcast@gmail.com Voicemail: (614) 681-1798 Discord: https://discord.speechsciencepodcast.com   New Episode and Interact here: www.speechsciencepodcast.com podcast.speechsciencepodcast.com   Support Patreon – https://www.patreon.com/speechsciencepodcast   Rate and Review: https://podcasts.apple.com/us/podcast/speechscience-org-podcast/id1224862476?fbclid=IwAR3QRzd5K4J-eS2SUGBK1CyIUvoDrhu8Gr4SqskNkCDVUJyk5It3sa26k3Y&ign-mpt=uo%3D8&mt=2   Credits Intro Music: Please Listen Carefully by Jahzzar is licensed under a Attribution-ShareAlike License. Bump Music: County Fair Rock, copyright of John Deku, at soundcloud.com/dirtdogmusic The Informed SLP: At The Count by Broke For Free is licensed under a Creative Commons Attribution License Closing Music: Slow Burn by Kevin MacLeod is licensed under a Creative Commons Attribution License.   Show Links   Speech Uncensored Podcast https://www.speechuncensored.com/   The Informed SLP: https://www.theinformedslpmembers.com/reviews/put-a-number-on-that-a-how-to-for-using-new-normative-values-for-perceptual-ratings-of-dysarthric-speech-in-children https://pubs.asha.org/doi/10.1044/2020_JSLHR-19-00114   SSPOD Shoutout https://www.shu.edu/health/news/speech-language-pathology-professor-awarded-1-4-million.cfm   Dysphagia Strategies and Gadgets https://totalfood.com/independent-feeding-tray-provides-innovative-dining-product-for-patients-in-need-of-assistance/ https://meetobi.com/   Teaching Counseling https://pubs.asha.org/doi/10.1044/2019_AJSLP-19-00013 https://leader.pubs.asha.org/doi/full/10.1044/leader.FTR3.11042006.8   Failing at IDEA https://www.disabilityscoop.com/2020/07/06/majority-of-states-failing-to-meet-obligations-under-idea/28545/   ASHA Spotlight https://www.asha.org/events/connect/?&utm_source=ASHA&utm_medium=highlight&utm_campaign=connect20 Speech Science Powered by: You!

The group discusses what they would have done different in grad school and what they wish grad schools would have offered.  On the show this week, Mike has hit the digital wall with zoom meetings from morning till the afternoon.  Michelle has been using the ASHA education portal to take advantage of free CEUs and Matt wonders why the Learning Pass isn't free all the time.    Matt ended his bowling season for the high school kids.  On Discord, you can interact directly with Matt, Michael, and Michelle and let them know how you are handling digital meetings all day.   On today's show, we look at the yearly ASHA Elections for vice-president for Finances of ASHA, offers to thank front line workers, and the potential to waive special education law. This week's Informed SLP update, they at the difference between pharyngeal and esophageal stasis.  We also look at our SSPOD Shoutouts and Due Process.  The ASHA spotlight looks at the yearly ASHA Elections.  We also replace the Hot Take with a Hot Seat   The Discord is up and ready for people to interact with the crew 24/7 with a new website, www.discord.speechsciencepodcast.com.  ----more---- SSPOD Shoutout: Do you know an SLP who deserves a digital fist bump or shout out?  We want to know your #SSPODSHOUTOUT, which is recognition for someone doing something awesome somewhere.  Ohio University AuD Graduate Kyle Rodgers was selected as an Officer Candidate for the Health Services Collegiate Program Medical Service Corps. On Monday, April 20th, 2020, Kyle swore the Oath of Enlistment to the United States Navy.         SSPOD Due Process:  Do you have a complaint or need to vent, then you want to participate in the #SSPODDUEPROCESS.    Article #1:  Front-line workers put themselves on the line, what are businesses offering as a thank you?       Article #2: Betsy Davos tells congress to keep special education law in place during the pandemic, do you agree?        The Informed SLP: We've all been there…felt the sensation of something ‘going down the wrong way.' In fact, it's pretty easy to tell when it happens. But what about when food ‘sticks' in a persons' throat?    ASHA Spotlight: ASHA Elections.    Contact Email: speechsciencepodcast@gmail.com Voicemail: (614) 681-1798 Discord: https://discord.speechsciencepodcast.com   New Episode and Interact here: www.speechsciencepodcast.com podcast.speechsciencepodcast.com   Support Patreon – https://www.patreon.com/speechsciencepodcast   Rate and Review: https://podcasts.apple.com/us/podcast/speechscience-org-podcast/id1224862476?fbclid=IwAR3QRzd5K4J-eS2SUGBK1CyIUvoDrhu8Gr4SqskNkCDVUJyk5It3sa26k3Y&ign-mpt=uo%3D8&mt=2   Credits Intro Music: Please Listen Carefully by Jahzzar is licensed under a Attribution-ShareAlike License. Bump Music: County Fair Rock, copyright of John Deku, at soundcloud.com/dirtdogmusic The Informed SLP: At The Count by Broke For Free is licensed under a Creative Commons Attribution License Closing Music: Slow Burn by Kevin MacLeod is licensed under a Creative Commons Attribution License.   Show Links   The Informed SLP: I've misplaced my bolus! Pharyngeal versus esophageal stasis The Informed SLP review: https://www.theinformedslpmembers.com/reviews-adults/ive-misplaced-my-bolus-pharyngeal-versus-esophageal-stasis Marvin, S., Thibeault, S. (2020) Pharyngeal versus esophageal stasis: accuracy of symptom localization. American Journal of Speech Language Pathology. https://doi.org/10.1044/2019_AJSLP-19-00161 Join The Informed SLP! http://www.theinformedslpmembers.com/         Health-Care Freebies https://www.retailmenot.com/blog/deals-for-front-line-health-care-workers.html?fbclid=IwAR1aPufSrRy-7_1LLVNJDd7k2TmxiKnO8VBGzjiix2SGfHNg04yupnnqHrM   https://www.registerednursing.org/nurse-freebies-covid-19/?fbclid=IwAR1u-DBLQmENeRr4BEUhd0HR4mjDegadJpcgm_lc4D7dPr5_a6sdoQ8-c9A   https://www.thrillist.com/news/nation/free-food-for-healthcare-workers   DeVos Does Not Waive Special Education Law https://www.npr.org/sections/coronavirus-live-updates/2020/04/28/847305749/secretary-devos-forgoes-waiving-disability-law-amid-school-closures?fbclid=IwAR29N7qI7SKZIi96OWKsyzjVD8pS6ub6Lyu1hj8u9SX6tH1I05SAo6MPOgM   ASHA Spotlight https://www.asha.org/about/governance/election/ Speech Science Powered by: You!

Michael has been using teletherapy to continue to grow his private practice.  He has found merits in this new part of the field may keep it going after the quarantine is lifted.  Michelle has not been seeing clients because of the Covid-19 lockdown.  Matt and Michelle talk the trials and tribulations of navigating unemployment, at this time.  Michelle's son continues to develop language and puts a new perspective on what we learned in a classroom.  Matt recounts doing Easter from a safe social distance, his first live tele-therapy session, and the impact of being with his kids 24/7 has had on him.   On Discord, you can interact directly with Matt, Michael, and Michelle and let them know if you are considering working in a travel position or how you are coping with the pandemic lock-down.  Ashley Hamlin from TherapyTravelers, a travel speech and language therapy company, sat down with Michelle to talk about the positives of setting your own location for a travel position. On today's show we look at the importance of sleep on cognition and a new FDA certified Speech Therapy App. This week's Informed SLP update, they look at the importance of minutes and why you may be spending twice the time needed.  We also look at our SSPOD Shoutouts and Due Process.  The ASHA spotlight looks at what ASHA is doing for us during this time of pandemic.  We also replace the Hot Take with a Hot Seat   The Discord is up and ready for people to interact with the crew 24/7 with a new website, www.discord.speechsciencepodcast.com.  ----more---- SSPOD Shoutout: Do you know an SLP who deserves a digital fist bump or shout out?  We want to know your #SSPODSHOUTOUT, like Ruben Caceres Jr., who works for the Dallas Independent School District as a special education teacher and now teaches remotely from home after schools were closed to contain the spread of COVID-19.  Ruben took his bailout check and used it to create masks for his students.        SSPOD Due Process:  Do you have a complaint or need to vent, then you want to participate in the #SSPODDUEPROCESS.    Article #1:  Recent studies show the impact sleep has on brain.  What impact does it have on cognition, memory, and phonological development?    Article #2: Constant Therapy is an app that was developed to help therapists monitor work that was done when the speech therapist was not there.  The app has been awarded a prestigious FDA award, but does it AI have a place in the new therapy realm?   Interview: Ashley Hamlin is the National School Recruiter at TherapyTravelers.  TherapyTravelers believes firmly that it takes a community to help to better the lives of special needs children, and they take seriously their responsibility to empower their incredible therapists, so that they can help all of their students to reach their full potential.  Ashley Hamlin talks with Michelle about what is expected with a travel position and how to find a good position.    The Informed SLP: Researchers wanted to find out if the intensity of the dose within a single session affected outcomes.  The results show that its possible that you may be giving twice the amount of therapy than is needed.      ASHA Spotlight: The crew recognizes ASHA's live townhall chats.    Contact Email: speechsciencepodcast@gmail.com Voicemail: (614) 681-1798 Discord: https://discord.speechsciencepodcast.com   New Episode and Interact here: www.speechsciencepodcast.com podcast.speechsciencepodcast.com   Support Patreon – https://www.patreon.com/speechsciencepodcast   Rate and Review: https://podcasts.apple.com/us/podcast/speechscience-org-podcast/id1224862476?fbclid=IwAR3QRzd5K4J-eS2SUGBK1CyIUvoDrhu8Gr4SqskNkCDVUJyk5It3sa26k3Y&ign-mpt=uo%3D8&mt=2   Credits Intro Music: Please Listen Carefully by Jahzzar is licensed under a Attribution-ShareAlike License. Bump Music: County Fair Rock, copyright of John Deku, at soundcloud.com/dirtdogmusic The Informed SLP: At The Count by Broke For Free is licensed under a Creative Commons Attribution License Closing Music: Slow Burn by Kevin MacLeod is licensed under a Creative Commons Attribution License.   Show Links   The Informed SLP: Half the minutes for the same morphology outcomes? Yes, please Plante, E., Mettler, H. M., Tucci, A., & Vance, R. (2019). Maximizing treatment efficiency in developmental language disorder: Positive effects in half the time. American Journal of Speech-Language Pathology. https://doi.org/10.1044/2019_AJSLP-18-0285 The Informed SLP blog: https://www.theinformedslp.com/qa_intensity.html Join The Informed SLP! http://www.theinformedslpmembers.com/   Travel Therapy – Therapy Travelers https://therapytravelers.com/   SSPod Shoutout: https://www.foxnews.com/us/texas-teacher-coronavirus-stimulus-check-masks   Sleep Sleep Sleep: https://pubs.asha.org/doi/10.1044/2019_JSLHR-S-19-0098?fbclid=IwAR1EY57aVGMsckjgiTvtzG7wMOA9c_XGyYtWuMxkmoJY_Wezhw0tEf-QJGY https://pubs.asha.org/doi/10.1044/2019_AJSLP-19-00125?fbclid=IwAR09P5jbDNKmOja8N4M632E_JB1HCwoBlxi39Kh6uYQj6eonta5gcx5s9tk https://www.sciencedirect.com/science/article/abs/pii/S0012369220306711?fbclid=IwAR1wdyg7X6JOtfNTPOuGlAtGuP3VtSEZ3vXOWKQOsD0ePQEUIKhOONpFlms   FDA and the Speech Therapy App: https://www.valdostadailytimes.com/news/business/fda-grants-the-learning-corp-breakthrough-device-designation-for-speech-therapy-app/article_7d4fc757-ae47-5cec-86ab-26b805b8e912.html?fbclid=IwAR2NxboviF-TXbFy70pbLQyxkFOpYCTcUVYFXl8R9JV6qfTouDvLFBI_CUY   ASHA Spotlight https://www.asha.org/Form/COVID-19-ASHA-Schools-Virtual-Town-Hall-Registration/   Speech Science Powered by: You!

Matt is not watching Wrestlemania for the first time in over 5 years as he lost his interest in the show. In the realm of therapy, Matt got his hands on an N-95 mask to wear for his safety. Michelle and her family have been doing the best they can to get out of the house as much as possible into their yard. Michael and Matt talk about getting hair-cuts at home. On Discord, the talk has been about how to handle long-distance learning in the schools. Leanna Sherred from Expressable, an online speech and language therapy company, sat down with Matt to talk about ways to implement teletherapy. On today's show, we look at the 2020 Medicare outpatient coding changes, external memory aides, and changes to educational law based on Covid-19. This week's Informed SLP update, they look at the long term effects of concussion. We also look at our SSPOD Shoutouts and Due Process. The ASHA spotlight looks at what ASHA is doing for us during this time of the pandemic. We also replace the Hot Take with a Hot Seat The Discord is up and ready for people to interact with the crew 24/7 with a new website, www.discord.speechsciencepodcast.com. SSPOD Shoutout: Do you know an SLP who deserves a digital fist bump or shout out? We want to know your #SSPODSHOUTOUT, like our Military SLPs who participated in a countrywide social hour online. . SSPOD Due Process: Do you have a complaint or need to vent, then you want to participate in the #SSPODDUEPROCESS. Article #1: At the beginning of the year, Medicare changed the billing and coding for outpatient therapy. Michael talks about a change that has affected him since the start of the new year. Article #2: How does visual aides affect long term memory? Visual aids can lead to better recovery of information, but only if you are using them correctly. Michael breaks down how this looks for executive functioning. Article #3: A waiver may be introduced for schools affected by Covid-19. What does this mean for therapy minutes on an IEP? Interview: Leanne Sherred of Expressable sat down with Matt to talk Telepractice and ways to make it work. Leanne calls Austin, Texas home but studied Speech and Hearing Sciences at the George Washington University in Washington, D.C. and gained her Master's in Speech-language pathology from Northwestern University in Evanston, Illinois. While her interest in speech prior to college was piqued by accents and dialects as it pertained to acting and performance, once she began studying in the field, her eyes were opened to the huge range of topics that an SLP can cover. She has worked in pediatric outpatient clinics, schools, early intervention, and home health. As many SLPs do, she found working with students, patients, and clients to be her favorite part, but dreaded the paperwork headache of insurance submissions and SO many denials. Her heart broke for families that were denied coverage, especially when out-of-pocket speech rates meant that the family would then potentially forgo the services all together. So with the combined brainpower of her husband, Nick - who has experience in the healthcare tech industry - and two other teammates, the vision for Expressable was created. A telepractice company, Expressable envisions a modern and affordable way for anyone who needs speech therapy to access it - with all the superb convenience of therapy at home and without breaking the bank. The Informed SLP: A recent study looked at the effects of a concussion. Post-concussion participants scored normal on the discrete cognitive-linguistic tests typically used. However, when shown an unfamiliar video, then given 5 minutes to write a narrative, the patients with post-concussion produced significantly fewer key story points. ASHA Spotlight: The crew celebrate ASHA's one-stop-shop for all information affecting SLPs and AuDs with the Covid-19 Pandemic. Contact Email: speechsciencepodcast@gmail.com Voicemail: (614) 681-1798 Discord: https://discord.speechsciencepodcast.com ----more---- New Episode and Interact here: www.speechsciencepodcast.com podcast.speechsciencepodcast.com Support Patreon – https://www.patreon.com/speechsciencepodcast Rate and Review: https://podcasts.apple.com/us/podcast/speechscience-org-podcast/id1224862476?fbclid=IwAR3QRzd5K4J-eS2SUGBK1CyIUvoDrhu8Gr4SqskNkCDVUJyk5It3sa26k3Y&ign-mpt=uo%3D8&mt=2 Credits Intro Music: Please Listen Carefully by Jahzzar is licensed under a Attribution-ShareAlike License. Bump Music: County Fair Rock, copyright of John Deku, at soundcloud.com/dirtdogmusic The Informed SLP: At The Count by Broke For Free is licensed under a Creative Commons Attribution License Closing Music: Slow Burn by Kevin MacLeod is licensed under a Creative Commons Attribution License. Show Links The Informed SLP: Stockbridge, M., and Newman, R. (2019). Enduring Cognitive and Linguistic Deficits in Individuals with a History of Concussion. American Journal of Speech–Language Pathology. https://doi.org/10.1044/2019_AJSLP-18-0196 https://www.theinformedslpmembers.com/reviews-adults/rethinking-long-term-effects-of-concussion Join The Informed SLP! http://www.theinformedslpmembers.com/ Expressable - Teletherapy https://www.expressable.io/ https://www.simplepractice.com/ Corona Virus Education Law Changes: https://thehill.com/homenews/administration/490952-coronavirus-bill-allows-devos-to-waive-parts-of-federal-special?fbclid=IwAR2YekoK85lCJoURi2VyqpPXs2-WOpAN6S2dBKOqH8xtqXIF7_rpQBUP_BY 2020 Medicare Changes: https://leader.pubs.asha.org/doi/10.1044/leader.BML.25012020.30?fbclid=IwAR3d4JHhjiMsZocrG2aXk2udUOsbVz6hXaHMxuKtav33yQkCvV5PEcgAvaY External Memory Aides: https://pubs.asha.org/doi/10.1044/2019_AJSLP-CAC48-18-0209?fbclid=IwAR3DdZnR43uaylOCMRunFb7GL4G0ivHGGo_ZgbMv3dSm-TLVOu8AKSDonbE ASHA Spotlight https://www.asha.org/About/Coronavirus-Updates/?fbclid=IwAR2KSbR7k90SIs6eJzFE3ujdurF2Woi-sDGARmpPC3nfY4VYCaaMWXZYFMs Speech Science Powered by: You!

The Discord is up and ready for people to interact with the crew 24/7. Matt and Michelle are prepping for ASHA this week!  As this goes live, Michelle will be in the air and Matt will be driving through the foothills of Tennessee. Are you making your plans to see the live taping at ASHA? Head over to Xceptionaled.com for more information to see the crew live in Florida.  Matt is presenting on the Ethics of Podcasting and Michelle is hosting a live Speech Science Event.   Teletherapy looks to be the future of speech and language pathology. What is the best way to handle the increase and demands? Michelle sat down with Kristin Martinez from PresenceLearning for a 3 part interview diving into the nuts and bolts of Teletherapy. This week on part 3, they talk about discharge and answering all of your questions about teletherapy. Kristin Martinez is the head of Clinical Standards and Outreach at PresenceLearning.      Did you know there may be a link between literacy and dementia.  Recent research shows that literate patients or patients that are life long readers may have a less chance at cognitive decline and dementia.  How does literacy impact your ability to correctly identify cognitive decline.  How comfortable would you be with a camera in your therapy session?  Who should or shouldn't access it?  A school district in Dallas wants cameras in every special education classroom.    The reading rate of speakers may be impacting people with Aphasia.  A study looked at rates of 120, 150, and 180 words per minute to identify the appropriate speed.  Could this impact receptive language students in the classroom?  It is ASHA week, what are your plans?  Make sure you tag #SSPOD in all of your ASHA podcasts and visit the hosts live on the show floor.      Email: speechsciencepodcast@gmail.com Voicemail: (614) 681-1798   Discord: https://discord.gg/3Tm5jrS   New Episode and Interact here: www.speechsciencepodcast.com podcast.speechsciencepodcast.com   Patreon – A Chance for Dinner at ASHA https://www.patreon.com/speechsciencepodcast   Rate and Review: https://podcasts.apple.com/us/podcast/speechscience-org-podcast/id1224862476?fbclid=IwAR3QRzd5K4J-eS2SUGBK1CyIUvoDrhu8Gr4SqskNkCDVUJyk5It3sa26k3Y&ign-mpt=uo%3D8&mt=2  ----more---- Show Links   Teletherapy https://www.presencelearning.com/   Literacy and the Brain https://www.scientificamerican.com/article/literacy-might-shield-the-brain-from-dementia1/?fbclid=IwAR3qiadfPiRJzb65qOGE27_bG8t5P2tQKfZSIJlM3CxZNerQmOAZevYlhuk https://www.dw.com/en/illiteracy-makes-dementia-three-times-more-likely-study/a-51223797?fbclid=IwAR15nzgzZ46DwuyFh1fRLYlPCt-3oMXx4gQVecPGF1T5YcabFx6f0vkC3Ew   Cameras in the Therapy Room https://www.educationdive.com/news/dallas-isd-trustee-wants-cameras-in-all-special-ed-classrooms/567207/?fbclid=IwAR1-UiQOYsSbz4M9uEHeaiuCpDWBVmTxlzkLybT4RbYcDhWESvxEdldg6FM   Text to Speech Rate and Aphasia https://pubs.asha.org/doi/10.1044/2019_AJSLP-19-00047?fbclid=IwAR0ttsx8LjejQOSVYPeJ3Y9V3J6bVs5GW5jSExB-uCRijkO6RMj0V_13LEg   Annie Glenn Award https://www.prweb.com/releases/asha_announces_recipient_of_its_prestigious_public_award/prweb16714556.htm?fbclid=IwAR1Dtdp5WVtsNrZ6QoL8Zzs3fXtxDwP-vTAfNYeSg_R1N9MJjkMLldZeDNc       Intro Music: Please Listen Carefully by Jahzzar is licensed under a Attribution-ShareAlike License. Bump Music: County Fair Rock, copyright of John Deku, at soundcloud.com/dirtdogmusic Closing Music: Slow Burn by Kevin MacLeod is licensed under a Creative Commons Attribution License.     Speech Science Powered by: You!

Michael returns to the show after traveling the country helping the non-profit the Focus Foundation.  Michelle celebrates her birthday this past week and continues to adjust to motherhood and her career.  Matt used his extended weekend from Columbus Day or Indigenous Peoples Day to complete his progress reports.    If you had a family member that needed a way to communicate, what would you do?  On today's episode March Rogers sits down and talks with Matt to discuss the way Lyra was designed, a symbol to speech app he and a team developed.  He and Cat Noone talk about the process of developing the app, watching March's daughter use it, and the future to use Lyra with others.          SLPs and ABA have been at odds with each other over the scope of their fields.  Recently ASHA submitted a letter to Arizona asking that a line about Communication be removed from licensure pertaining to ABAs.  How loud is too loud?  Hugh Grant recently spoke out that movies have gotten too loud, but cinemas say that they keep the sound below 85 dB.  How loud is too loud and how long can you sustain it?    Funding in every state is strained.  In Pennsylvania, special education classes have grown larger than expected.  This rise in student population means that the current funding strategy is wrong.  Lastly, what is the link between tongue strength and articulation?  A new article shows the link or lack there of between tongue strength and articulation.      Email: speechsciencepodcast@gmail.com Voicemail: (614) 681-1798   Discord: https://discord.gg/3Tm5jrS   New Episode and Interact here: www.speechsciencepodcast.com podcast.speechsciencepodcast.com   Patreon – A Chance for Dinner at ASHA https://www.patreon.com/speechsciencepodcast   Rate and Review: https://podcasts.apple.com/us/podcast/speechscience-org-podcast/id1224862476?fbclid=IwAR3QRzd5K4J-eS2SUGBK1CyIUvoDrhu8Gr4SqskNkCDVUJyk5It3sa26k3Y&ign-mpt=uo%3D8&mt=2  ----more---- Show Links   Lyra App https://www.getlyra.com/   ABA and SLPs https://www.asha.org/uploadedFiles/ASHA-Comment-Letter-to-AHCCS-AZ-about-ABA-091919.pdf   Tongue Strength and Articulation https://pubs.asha.org/doi/10.1044/2018_AJSLP-18-0023?fbclid=IwAR3PKXSH40ebFSKqoFK-urL6LqdVkoGZfjApTXMpELlfvxt7sz6IMt7bk8E   Rise in Special Education https://levittownnow.com/2019/10/14/rise-in-special-education-needs-causes-pa-officials-to-rethink-funding-formula/   Deafening Cinema https://www.theguardian.com/film/2019/oct/13/cinema-noise-levels-ruining-films-joker-hugh-grant?utm_source=share&utm_medium=ios_app&utm_name=iossmf&fbclid=IwAR1CT7MOD4Vaemk7SNkHCoZ8lPAkrmYOd3rYtuNAWD3z_1QpjaV1olf2D3E   http://dangerousdecibels.org/education/information-center/noise-induced-hearing-loss/#targetText=With%20extended%20exposure%2C%20noises%20that,loud%20enough%20to%20cause%20damage.     Intro Music: Please Listen Carefully by Jahzzar is licensed under a Attribution-ShareAlike License. Bump Music: County Fair Rock, copyright of John Deku, at soundcloud.com/dirtdogmusic Closing Music: Slow Burn by Kevin MacLeod is licensed under a Creative Commons Attribution License.     Speech Science Powered by: You!

Matt and Michelle hold down the fort this week.  Matt has begun seeing his students and after 2 weeks of planning, he runs into MAP testing, which means schedule changes.  Michelle is planning a trip back to Colorado and continuing her therapy positions.  The crew continues to plan for ASHA and a special offer for Patreon donors!    Teletherapy can be considered the wild west of the therapy realm.  Eric DeGrove from Blink Teletherapy Sessions breaks down how therapy looks and works via teletherapy.  Eric DeGrove is the founder and president of Blink Session, a telehealth platform designed specifically for speech therapy. Blink Session's story started back in 2016 when Eric and his wife, Rikki, a speech pathologist, looked into adding teletherapy to their private practice in Colorado Springs, CO where they live. They soon learned that there were no live video platforms out there with the features therapist would need to help replicate Online, what SLPs do in person. Since Eric's background is in software development, he explored the potential of building a platform that would include features that would help SLPs do amazing therapy Online, and that is how Blink Session was born.   One in 4 parents are concerned about their children's communication abilities.  How does a therapist help reach out to those parents?  How much time do you put into deciding the vocabulary to be used for AAC?  Four variables are listed to identify appropriate vocabulary to use in AAC therapy.    Cochlear implants have been implanted for dual hearing losses.  Now the FDA has cleared the way for hearing loss in one ear and the use of Cochlear implants.  Lastly, the importance of whole body therapy is shown daily.  A group working with students to learn to surf allows therapy to be targeted in the ocean.     ----more----   Email: speechsciencepodcast@gmail.com Voicemail: (614) 681-1798   New Episode and Interact here: www.speechsciencepodcast.com podcast.speechsciencepodcast.com   Patreon – A Chance for Dinner at ASHA https://www.patreon.com/speechsciencepodcast   Rate and Review: https://itunes.apple.com/…/speechscience-org-…/id1224862476…   Show Links One in Four https://www.asha.org/News/2019/One-In-Four-Parents-Concerned-About-Their-Child-s-Ability-to-Communicate/?fbclid=IwAR3FQpcG3EXbiXFKYO0x5fvKtuvlt76JD07N3icXRBUyldM5Yu2dNc44m_Y     AAC Vocabulary Therapy https://pubs.asha.org/doi/10.1044/2019_AJSLP-18-0041?fbclid=IwAR2-nxKXrKJwp56EWQEuDrmmRKAY-JUAq7oegVYRVkpy7WXe5Vz7gde6DjU     Cochlear Implants https://blog.asha.org/2019/08/23/fda-approves-cochlear-implants-for-single-sided-deafness-asymmetric-hearing-loss/?fbclid=IwAR1BxJEb5YaAgwWjtwF-IqrieKQbR2IKrgDkFPv3A9RElrMLYT9wALkbB_0     Surf Therapy https://expo.nj.com/life-and-culture/g66l-2019/08/db0ffe83468411/shore-towns-surf-therapy-brings-joy-to-specialneeds-kids.html?fbclid=IwAR37aZC6Ok4Sl5NE7hdWWj9VXMI7DkUMkUvwmIcvZEFzrSCkw_1gELZfhLs     Teletherapy https://blinksession.com/     Intro Music: Please Listen Carefully by Jahzzar is licensed under a Attribution-ShareAlike License. Bump Music: County Fair Rock, copyright of John Deku, at soundcloud.com/dirtdogmusic Closing Music: Slow Burn by Kevin MacLeod is licensed under a Creative Commons Attribution License.     Speech Science Powered by: You!

Matt starts at his new school job which means building the puzzle pieces of a therapy schedule.  Michelle welcomed family from across the country into her home.  Michael has been collaborating with local SLPs to prepare for the upcoming school year.  Matt's youngest son can be heard in the background during parts of the show.             Imagine sitting in your therapy room with a student when the sound of a firework goes off.  But its not a fire work, its an active shooter.  Some of us have been through trainings such as Alice.  But no one talks about what happens afterwards.  Rachel Archambault, MA CCC-SLP, has been a speech and language pathologist serving in the Stoneman Douglas High School in Parkland Florida.  She was working with students when shots rang out.  Rachel has taken this experience and began the PTSDSLP to help therapists cope and work with students who have been through a traumatic experience.  She also speaks about her journey to bring in a therapy animal.   The new school year has begun and with that, the influx of students and parents with tech.  ASHA has released 7 resolutions to curve the tech appeal.  The Autistic Self Advocacy Group does not agree with Autism Speaks and the message they are fostering in the new Julia ads from Sesame Street.  The Autistic Self Advocacy Group has pulled their support but what does this mean on how we treat our families and what language do we use?   How familiar are you with eye gaze?  How much time do you spend on coordinating the board to allow for greater accuracy in choices?  A new research article discusses how we can help our patients use eye gaze more accurately.  Lastly, the NFL continues to make strides to help families with disabilities.  The Philadelphia Eagles has opened an autism friendly room for their games on Sundays.      Email: speechsciencepodcast@gmail.com Voicemail: (614) 681-1798   New Episode and Interact here: www.speechsciencepodcast.com podcast.speechsciencepodcast.com   Patreon – A Chance for Dinner at ASHA https://www.patreon.com/speechsciencepodcast   Rate and Review: https://itunes.apple.com/…/speechscience-org-…/id1224862476…  ----more---- Show Links PTSD SLP https://www.facebook.com/groups/399244554044299 https://www.lutheranchurchcharities.org/k-9-comfort-dogs-about.html?fbclid=IwAR1g6-yMp0_M14KRYYcp3d0sT-TFLzM5dvCv7etL112t3K0I8ftW1HUOMKk Instagram: @PTSD.SLP   7 Tech Resolutions https://www.asha.org/News/2019/7-Tech-Resolutions-for-the-New-School-Year/?fbclid=IwAR2PNUwd05oX8Y-kXNmLzbyQTmNx1BwbM-doaz0R1b9xBE9wZR_dqD-8QF4   Sesame Street PSA https://www.disabilityscoop.com/2019/08/13/why-autism-group-breaking-up-with-sesame-street/27011/?fbclid=IwAR005onnnAJ3g_hWOpNPXfJExhqPWGb8-xBD0IDvaVzy6vM2kkzDai_EDKM   Eye Tracking https://pubs.asha.org/doi/10.1044/2019_AJSLP-19-0006?fbclid=IwAR3B8klZaW35ojGco4BTC5tgluO2DuGCGObhHx7UXrjfYZqTo7I74v6tLfk   Autism and the NFL https://www.cbs42.com/sports/philadelphia-eagles-open-sensory-room-for-fans-with-autism/?fbclid=IwAR3yPux6SD-sKxCl2vym69TEthPcVCvgkTFx4tnpwGotIM6DfZtj8DvBQdE     Intro Music: Please Listen Carefully by Jahzzar is licensed under a Attribution-ShareAlike License. Bump Music: County Fair Rock, copyright of John Deku, at soundcloud.com/dirtdogmusic Closing Music: Slow Burn by Kevin MacLeod is licensed under a Creative Commons Attribution License.     Speech Science Powered by: You!

Episode 82: Disney and a Disability, Rolling with the Magic, LGBTQ Competency, Diagnosing Dementia, and Conversations with an Toddler   This week Michael talks about taking therapy from the clinic to the real world, Michelle talks swimming with a young child, and Matt is live from Disney World.  A Facebook post had an SLP state she may not work with a patient if she does not agree with their relationship status.  How culturally competent are SLPs when it comes to LGBTQ populations?  June is Pride Month and a study of 4 countries shows that SLPs have difficulty in identifying the needs of a growing population base.  Why does the right diagnosis matter when it comes to Dementia?  Many families hear the word dementia and think Alzheimer's.  Its important to educate our families and patients about the differences in dementia and the expected outcomes.   Lastly, a wonderful video has hit the internet showing a dad and son talking.  The son, however, is very young but has picked up some great social language skills.  This video is a wonderful model for all parents.  How do you do Disney World if you have a Disability?  Melissa Knight from Rolling with the Magic joins the conversation this week to help take away some of the anxiety related to vacationing with a disability.  Melissa is a blogger and Disney Parks enthusiast who visits Walt Disney World several times a year. Melissa started her blog to share her experience as a wheelchair user and loves showing people that the parks are for everyone.   Email: speechsciencepodcast@gmail.com Voicemail: (614) 681-1798   New Episode and Interact here: www.speechsciencepodcast.com podcast.speechsciencepodcast.com     Patreon – A Chance for Dinner at ASHA https://www.patreon.com/speechsciencepodcast  ----more---- Rate and Review: https://itunes.apple.com/us/podcast/speechscience-org-podcast/id1224862476?mt=2&ign-mpt=uo%3D8   Show Links LGBTQ https://pubs.asha.org/doi/10.1044/2015_AJSLP-14-0095?fbclid=IwAR11GfH7pHfBf0j9eb6sghlC18GafZJPntzKE2cLz84Rtq3bu6x4IZH2FQc   Diagnosing Dementia https://www.npr.org/sections/health-shots/2019/03/18/703944116/is-it-alzheimers-or-another-dementia-the-right-answer-matters?utm_source=facebook.com&utm_medium=social&utm_campaign=npr&utm_term=nprnews&utm_content=20190318&fbclid=IwAR1Z64Y4nF0D2rfRUWNjUaEcH9Wpe28_0Zh_xBUvYVyVzklS8ne3skoGnfo   Rolling with the Magic http://www.rollingwiththemagicblog.com/ https://www.facebook.com/RollingwiththeMagic/   Father and Son https://www.today.com/parents/dad-chats-infant-son-about-tv-finale-adorable-video-t155568     Intro Music: Please Listen Carefully by Jahzzar is licensed under a Attribution-ShareAlike License.   Bump Music: County Fair Rock, copyright of John Deku, at soundcloud.com/dirtdogmusic   Closing Music: Slow Burn by Kevin MacLeod is licensed under a Creative Commons Attribution License.       Speech Science Powered by: You!

Episode 78: Guillain-Barré Syndrome Recovery Part 2, Narratives on Autism, Battling Fake Science, and Soap Box Derby   On this week's episode, Matt recounts his car accident while doing home health care and what it was like in the back of a police car, Michael traveled back to the big apple for family before his end of year evaluations kick in, and Michelle got to celebrate her first Mother's Day as a mom and prepares for therapy training with horses.    Do you use people first language?  According to a recent study, people with autism may prefer to be called an autistic person.  How does that change your therapy mindset?  The measles outbreak has come on the backs of questionable and false science leading to anti-vaccine movements.  How do we in the clinical setting combat false science?  Lastly, many kids dream of driving a soap box derby car to victory.  One town is allowing children and young adults with disabilities and opportunity to achieve this dream for themselves.  Guillain-Barré syndrome is a rare neurological disorder in which the body's immune system mistakenly attacks part of its peripheral nervous system.  Carly Stoltenberg, M.S., CCC-SLP was working as an SLP for the past 20 years when at the age of 46 her live changed over-night.  On part 2 of her interview, Carly talks about recovery and what her new normal looks like.   How do you handle not being able to communicate when your job was teaching others to communicate?  What would you say to a doctor who told you your recovery chances were low?  Carly handles it like a champ!   Go Vote: https://www.asha.org/about/governance/election/   Email: speechsciencepodcast@gmail.com Voicemail: (614) 681-1798   New Episode and Interact here: www.speechsciencepodcast.com podcast.speechsciencepodcast.com     Patreon – A Chance for Dinner at ASHA https://www.patreon.com/speechsciencepodcast  ----more---- Rate and Review: https://itunes.apple.com/us/podcast/speechscience-org-podcast/id1224862476?mt=2&ign-mpt=uo%3D8   Show Links Carly Stoltenberg https://leader.pubs.asha.org/doi/full/10.1044/leader.FPLP.23092018.72 http://www.ebshealthcare.com/blogs/slp/2014/my-ebs-journey-carly-stoltenberg https://www.facebook.com/groups/1057840921027306/?tn-str=*F&fref=gs&dti=1057840921027306&hc_location=group_dialog     Narratives About Autism https://pubs.asha.org/doi/10.1044/2018_AJSLP-18-0045?fbclid=IwAR3cbWxS3HK9La99SbTtF7uW-3h26C1KPeAiHAMOt4AsX1B0A6mCWTN4f_s   Battling Fake Science https://www.cbsnews.com/news/mmr-vaccine-teaching-anti-vax-parents-to-trust-science/?fbclid=IwAR2aPX1kL6JqAzPpHl16cFgKbnlRexraQxLrC00efdQk6dnpVLlYZLQO9rI   Soap Box Derby Days https://www.dailyprogress.com/news/state/soap-box-derby-includes-special-needs-division/article_1b0d40d6-7506-11e9-8269-3bbcfd3eb1b5.html?fbclid=IwAR3HFnS59CTuvsx5XRlsOWX-hsJeqB1VbeUkmnifxBOjvJHIGY4VJHF-TzM     Intro Music: Please Listen Carefully by Jahzzar is licensed under a Attribution-ShareAlike License.   Bump Music: County Fair Rock, copyright of John Deku, at soundcloud.com/dirtdogmusic   Closing Music: Slow Burn by Kevin MacLeod is licensed under a Creative Commons Attribution License.       Speech Science Powered by: You!