Podcasts about aphasia access

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

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

Meet Our Newest Interviewer! Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic communication impairments. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer Guest bio  Kathryn Pettigrove is a speech pathologist passionate about supporting wellbeing and connection for people with aphasia and their loved ones. She has worked in acute stroke wards and in- and outpatient hospital rehabilitation, but most loves engaging with people with aphasia in community settings, and is a particular advocate of community aphasia groups. Kathryn is a PhD candidate with the Aphasia Centre of Research Excellence (Aphasia CRE) at La Trobe University in Australia where her research focuses on aphasia groups and their facilitation. She also works as a clinical educator at the University of Sydney and serves on the Board of the Australian Aphasia Association. Her other loves include coffee, hiking, and singing with her a cappella choir.       Listener Take-aways In today's episode you will: Identify different models for community aphasia group facilitation. Learn about the skills required to successfully facilitate aphasia groups. Understand the range of roles speech-language pathologists can play within community aphasia groups.    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 in 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 features Kathryn Pettigrove. Kathryn is a PhD candidate with the Aphasia Center of Research Excellence at La Trobe University in Australia, where her research focuses on aphasia groups and their facilitation. She also works as a clinical educator at the University of Sydney and serves on the board of the Australian Aphasia Association. Welcome, Kathryn, and thank you for talking with me.   Kathryn Pettigrove  Thanks, Lyssa. I'm really happy to be here.   Lyssa Rome So what motivated you to explore aphasia groups as part of your clinical practice?   Kathryn Pettigrove It's a bit of a story, I guess. I had been working in inpatient, acute and rehabilitation wards for the first four and a half years or so as a speech pathologist. And in those contexts, I worked pretty exclusively, almost exclusively, in impairment therapy in one-on-one settings. And it was great work, I really loved it, it was really important work. But I just really often had this feeling that I wasn't able to do nearly as much as I wanted to for people with aphasia before they were discharged back home and back to the community. And I think that's a common experience actually, that people have.  So I decided that I wanted to shift out of hospital settings for a while and see if I could pursue some other paths that would give me opportunities to work more closely with people with aphasia. One of the first roles that I took on after that was working as a speech pathologist for the Aphasia COMPARE trial that was happening in Australia at the time, led by Miranda Rose and her team. These trials involved delivering aphasia therapy, intensive aphasia therapy, over two weeks for people with aphasia in groups of three. I know that on the Aphasia Access podcast, you guys sometimes talk about “aha” moments. The very first day that I showed up for work in the trial, with this group of three women was just full of “aha” moments for me.  So the first one was that we started to do language therapy in the group. I have not had that experience before of delivering language therapy in a group setting. Almost straight away, I just thought it was so amazing how much more engaging it was, how much more motivating it was for everybody involved, and how much more realistic it felt to actual communication. The participants in the therapy were communicating in a way that reflected real communication, it was much more social, it was much more interactive, not just transactional. I thought, “How have I not realized this before, how much more reflective of communication group settings can be?” So that was the first sort of “aha” moment for me.  But then after that, in the lunch break, we were chatting and getting to know each other. I learned that the three women all knew each other because they were part of the same community aphasia group. And they were so motivated to tell me about their experience with this group. They said to me that it had been the most important part of their experience with aphasia, the thing that made them feel the most normal again, one of them said to me that she had lost all of her friends after her stroke and aphasia, and this group gave her a community again.  The group sounded amazing to me, because it had actually been set up and established and run by people with aphasia themselves. So there were a group of, I think about four people with aphasia, who had met in hospital, they lived nearby each other, and they started meeting just for coffee to catch up. Over the years, it grew bigger and bigger and more people with aphasia joined. It got to the point where I think it had about maybe 14 members from the surrounding region, people would drive an hour or two hours to come to this group. They organize everything themselves, they decided their activities and their agenda. They spread awareness of aphasia in their community. They fundraised, and with the funds they raised, they hired speech pathologists to come and do language therapy with them some of the time when they wanted that. It was just something so different from my previous model of support and rehabilitation for people with aphasia. And it was clearly so empowering and so enjoyable, and it just filled them with life.  I just was absorbing all of this like a sponge, and really quickly, I just got very excited about community aphasia groups. So when, a few years later, I had the opportunity to work in this area for my PhD with the Aphasia Center of Research Excellence, I thought, I can't say no to this opportunity.   Lyssa Rome What an amazing story that is. And how interesting too, that it was the people with aphasia, who were sort of shaping what they wanted to get out of the groups, and then bringing SLPs in. So I'm wondering, then, how what sparked the shift for you? Or maybe it wasn't a shift, but what sparked your interest in studying how groups are facilitated? Where did that come from?   Kathryn Pettigrove Well, I suppose that experience was a big part of it, because although I hadn't been involved in community aphasia groups previously, I knew of them through, you know, my studies and through research that was out there. In my mind I had pictured primarily groups that were facilitated by speech pathologists. So this model was something different, that I hadn't been exposed to before. I was really interested to learn more about, but also because there's a lot of information, there's growing research all the time about how wonderful community aphasia groups are, which they absolutely are. But there's also some more recent research, and in particular, some of the research from Lucy Lanyon's PhD, about the fact that not only a good community aphasia groups beneficial, but groups that are facilitated poorly or less skillfully, can actually create negative consequences for people with aphasia. So it's not a benign situation. If a person with aphasia goes to a group that has been promoted as something designed specifically for them, and even there, there are challenges for them to participate and engage with other people, that can be really detrimental, especially for people with more severe aphasia.  We want these groups to be welcoming and successful for people with aphasia, and absolutely not to create additional barriers for people with aphasia to connecting with communities. So that really sort of made me think that should be a priority, making sure that the facilitation of these groups has done really well.   Lyssa Rome So your research led you to write a scoping review that included 177 texts. As I was reading it, I found myself really nodding along and recognizing some of your descriptions of the inherent challenges in facilitating groups, and also some of the skills required to do that job well. Can you talk a little bit about the complexity of facilitating aphasia groups?   Kathryn Pettigrove Yeah, absolutely. You mentioned the number of studies in the review, which I just wanted to point out that that was actually really something that made me feel happy to know how much interest there is in community aphasia groups in literature. People are obviously really wanting to learn more about them, which is great. But yeah, I think there's definitely a lot of complexity involved in facilitating community aphasia groups. As speech pathologists, we know that it's not always easy to support successful communication, even with a single person with aphasia. There's a lot of things to be thinking about. So we are considering their aphasia presentation, their communication strengths and challenges, what strategies might be most or least helpful for them, and when and then hopefully, we're actually implementing all of those things, because we know that knowing those strategies is not always the same as implementing them well, with ideally, the goal of those really strong SCA strategies of revealing and acknowledging the competence of the person with aphasia.  So I think it makes a lot of sense that those complexities are magnified when there's more than one person with aphasia present in a group or in the room. Because in the role of facilitator, you're not only trying to support successful communication between yourself and each of those members, all of those dyads, I guess you could say, but also facilitate successful communication directly between all of those members. So that might mean helping each individual person to get their message across, and also helping the other members of the group to be understanding each other person's message. If you have people with a range of different aphasia presentations and severity in the room that can present a challenge; it can be difficult.  Then of course, that's not to mention all of the usual challenges that come along with facilitating any group. We know from other fields of research, like social work and psychology and counseling, that facilitating any group work involves challenges of managing dynamics and group cohesion, potentially resolving conflicts, trying to manage if there are very talkative or very quiet members. And that can be difficult without the presence of communication disabilities. So obviously, combining those two things, again, it magnifies some of those complexities. It's not not really surprising, I don't think that it does.  But one of the things that we were really interested in in the scoping review was what was already known or what was being looked into about this process of facilitation, and what can make it successful. They were smaller, there was a subset of about 10 studies, qualitative studies that look specifically at facilitated behaviors that were seen to positively affect the functioning of the group and the cohesion of the group. That gave some really good foundational information for facilitators to be considering. They fell under three broad umbrella categories.  The first one was taking approaches to equalize participation opportunities. So you know, trying to keep an eye on the engagement and the interaction of all of the members and provide space and opportunities and support for everybody to engage and join in.  The second one was equalizing power imbalances. So trying not to really emphasize that there's one expert and one clinician, and then all of the people with aphasia are the clients who are there to have something fixed about them, or who have some kind of impairment, trying to really equalize those power imbalances.  The third thing was equalizing communication access. So all of the things that you would expect: using multimodal communication and supported communication so that everyone has communication access to the activities of the group.   Lyssa Rome All of those are challenges that I face, certainly. I want to ask you actually, specifically about the second one, because it is reflected, I think, in something that you write, in the paper about how SLP-led groups may inherently, if inadvertently perpetuate a power differential between the patient in need of treatment, and the expert clinician. So that quote from your paper, I think, is really interesting, because it highlights how that preserves the focus on impairment. I'm wondering what your thoughts are about how group facilitators or people running aphasia group programs can avoid perpetuating that power differential that you described?   Kathryn Pettigrove Yeah, I think it's a really interesting point. I think it's really important to emphasize from the beginning that, obviously, speech pathologists are the communication experts. We're absolutely essential in the support and rehabilitation and advocacy for people with aphasia. We have a lot of really important roles to play.  But I do think that we are often trained primarily to be therapists and clinicians who deliver therapy. We also very frequently are working within healthcare organizations or funding models that require us to view our progress and our performance in terms of impairment, improvement in impairment and basic function.  I think that's changing. I do think that's changing slowly, you know, we're moving much more in the directions of social models of healthcare and the Life Participation Approach to Aphasia. But those really traditional and long ingrained systems don't change overnight, they change slowly. So often, speech pathologists are limited in what they're able to do. Clinicians will say that they feel that their service or their group service sometimes is only justifiable within their service, if it has a primary focus on improving language.  This can, as you said, maintain that focus on impairment and trying to fix something. I think that also people with aphasia and their family members are likely to view speech pathologists in that way as well to look to them as the professionals and the clinicians who will be providing expert advice, and there is absolutely a place for this. So you know, there are groups that are going to be specifically for impairment based language therapy and groups that are about aphasia education, communication partner training, those types of groups. It's appropriate that the speech pathologist is leading the group and taking on a role of expert but that's not the only type groups that we want to see, there's a whole range of other types of groups that we want to see that don't necessarily require or benefit from such a difference in power, I guess.  I guess the other thing that I would say is even where there is that focus on impairment or the medical model, there's absolutely lots of things that facilitators and clinicians can do to try and not create a power differential that is uncomfortable or not contributing positively to progress.  Some of the things that we found in the review that really helped to equalize those power differences, there are a few things, but I think some of the main ones were, as I mentioned previously, always maintaining that focus on revealing and acknowledging competence of the people with aphasia that you're interacting with, regardless of whether the setting is impairment-based therapy, or purely social conversation and peer support. That foundation, being there at all times will make a really big difference, I think.  Making room for humor, sharing humor with the clients, or the people with aphasia. You know, appropriate self-deprecating humor, having that ability to expose your own naivete in certain areas where, you know, you don't have experience in something and you're learning from the people in the group, because they know more about whatever it is, whether it's living with aphasia, or something completely unrelated, being willing to step out of that rigid role of I'm the expert, I'm the clinician, I'm in charge, can go a really long way to helping create positive dynamics within the group.    Lyssa Rome Absolutely.    Kathryn Pettigrove I think that the third thing, and I'll probably mention this a few times as we're talking is that one of the really important things is making it clear from the beginning to both the facilitators and the members of the group, what the purpose of that particular group is, because groups can have lots of different purposes and goals. If a person with aphasia is coming to a group thinking that it's going to be a social, open conversation, peer support group, but the facilitator is viewing it as a language therapy group, and is therefore exposing and correcting the errors that the person is making in their communication, that mismatch can be quite confronting, and uncomfortable. So I think making sure that everybody is on the same page about what this group is for can make a really big difference in keeping that power balance in check.   Lyssa Rome I really recognize what you're talking about there. I can see how helpful those strategies would be in trying to address some of those imbalances that can happen. You talked a little bit earlier about alternative models for facilitation of groups. I'm wondering what some of those models are, how they might look different than the traditional model of SLP as facilitator, and what would some of the advantages and disadvantages of the different alternative models be?   Kathryn Pettigrove There's a lot a lot to talk about in this topic, actually. That was one of the things that was really interesting about the scoping review, we saw a lot of different facilitation models represented.  To start with, I would just say that, what I'm, you know, talking about here, and what we are talking about in our research team is not so much alternative models to the traditional speech pathology-led groups, but more additional models that can be used to extend that traditional model, because, like I was saying before, there's a really important place for speech pathology-led groups for people with aphasia, of different types and purposes. We don't want to get rid of those.  But sticking to those only really inherently limits the group services that we can offer to people with aphasia. I mean, I think about Australia, we work primarily within a public health system and I know that in different countries the system is a little bit different. Here most aphasia services are offered within the public health system. Most aphasia groups that are led by speech pathologists are led by speech pathologists working in public health. So if every single speech pathologist in public health who worked with people with aphasia ran a community aphasia group, we still wouldn't have anywhere near enough groups for all the people living in Australia, who have aphasia and might like to access a group.  So one thing is about increasing the numbers of groups that are available to people. But the other thing as well, is, again about the different types of groups and the different purposes that groups serve. So there's a big difference between a group that is primarily about language therapy, or a group that is about practicing functional communication strategies, versus a group that is more about peer support or a group that is simply about communication access to enjoyable group activities, like leisure activities, or conversation about current events. These groups are all quite different from each other, and probably require and benefit from different models of facilitation. So I just wanted to, you know, make that clear that it's sort of more about broadening what is available to people with aphasia.   Lyssa Rome I like that distinction between alternative versus additional.   Kathryn Pettigrove Yeah, exactly. Because there's a lot of wonderful work going on with aphasia groups at the moment. But we just know that it's not enough, it's not enough at the moment, and we need more numbers. I think it would be wonderful if eventually, all people with aphasia would have access not only to the single group in their area, but a range of groups that offer different services and meet different needs that they could choose from. That's a long term goal, obviously, but I think we can be moving in that direction.    Lyssa Rome Yeah.    Kathryn Pettigrove So in terms of the different facilitation models, in the scoping review, we saw a really wide range, the vast majority was speech pathology-led groups. But we also saw groups led by speech pathology students, groups, led by volunteers, groups led by multidisciplinary teams, and also groups led by peers. So people with aphasia themselves, sometimes co-leading with another professional, sometimes purely peer-led. So there were lots of combinations of facilitation models.  There wasn't actually any research that specifically looked at comparing the different facilitation models directly and identifying their comparative benefits and disadvantages. But there were some qualitative interview studies with people with aphasia and family members, about their experiences with different groups and different models of groups. They identified some themes around some of the benefits of different types.  So speech pathology-led groups were often really valued, because of the communication expertise that the clinicians brought, the experience that they brought, and also often an increased level of structure in those groups, especially for people with more severe aphasia. Peer-led groups, on the other hand, sometimes people felt that in those groups, they had a greater ability to actively contribute to the decision-making about what would happen in the group. Also to take on the role of helper themself. I think, in peer-led groups, people with aphasia often feel more comfortable to step up and encourage the co-members and help each other and give advice. Whereas in a speech pathology-led group, sometimes that didn't happen as much, potentially because the expectation was that the speech pathologist as the expert would offer those things.  Again, these are just sort of general themes that were reported from the interviews. The main point, I think, is not to say that one model is better or best, but that there's a place for all different types of models, depending on the goal that they're trying to meet.    Lyssa Rome So following on that you write that sometimes SLPs can take on more of an advocate or a coordinator role rather than being strictly a leader. Can you say a little bit more about how it works when SLPs take on that advocate or coordinator role?   Kathryn Pettigrove Yeah, I think that, as we've already talked about, speech pathologists, I think, are always going to have a really important role to play in supporting groups for people with aphasia—all types of groups for people with aphasia. But it probably doesn't necessarily need to be as the facilitator or the group leader sitting in the room for every session of every group that runs. I think that we want to provide that service when it's needed. But then, in situations where we might not be facilitating, it's still going to be important for speech pathologists to be available in other roles, such as supporting roles and coordinator roles. We know that the facilitators of groups, both volunteers and peers with aphasia, say that they do need support in these roles. That might be for administrative tasks, like contact lists, and venues, and that sort of thing. But it might also be for things like problem solving, if there are challenges in the group, and also as a link back to a speech pathology health service for ongoing referrals, or for them to access extra speech pathology in future if needed. So there's always going to be a role for speech pathologists to play there.  The other thing is that we might be able to look at transitioning groups that were initially speech pathology led to become a bit more independent and peer-led, where the speech pathologist can support the group in this direction and gradually move back in their role. Because something that's really important, I think, is that we don't want to create a situation where people with aphasia are dependent and reliant on the speech pathologist in order to access group services and enjoyable services with other people with aphasia.  So our role is going to remain crucial across all the different types of groups. But it may change over time and in different settings.   Lyssa Rome It makes me think about how, when we were meeting in person at the Aphasia Center of California, I always loved it when group members would talk for over an hour in our conversation group or in a book group, and then they would go across the street together and keep on talking without any speech pathologist there.   Kathryn Pettigrove Absolutely, yeah. I think that that's, you know, one of the greatest signs of success. In our role as speech pathologist, if we've enabled and connected people to do that. I just think, oh, that's the best outcome.   Lyssa Rome Yeah, yeah. So I wanted to ask you a bit about peer facilitation. We don't see as much of that here in the US as, for example, in the UK. So thinking around the world, where is that happening? What are some of the benefits that come from having people with aphasia facilitating groups?   Kathryn Pettigrove It's interesting, because there were peer-led groups represented in the review, but mostly, in fact, I think exclusively, only from 2000 and onwards. So they're appearing in the literature, more and more now, and I think that that's a trend that we're going to continue to see grow, which is really nice. So, as you mentioned, peer-led models have a longer history in places like the UK. So Aphasia Connect, which is now Aphasia Re-Connect in the UK, and also the Speakability groups in the UK all have been built on a model of peer support and peer leadership.  We're starting to see it more in other areas now. So we're looking, there's some research happening right now in Australia, looking at peer-led community aphasia groups, there's some work that's been happening in some health networks in the States and in Germany and in Canada. So it is starting to pop up, which is really nice to see.  In terms of the benefits, I think, as well as some of the things that we touched on before in terms of the members feeling potentially more empowered to take decision making roles, we also see from the literature on peer-led groups, that there's a real benefit that the members and the facilitators have that shared experience of aphasia, they can really understand each other and their experiences in a way that a speech pathologist or another person who doesn't have aphasia can't really do.  It can be really empowering not just for the group members, but for the people with aphasia who take on facilitation roles, to step into a volunteering role or role where they have an opportunity to help and support others and demonstrate their own knowledge, use the experience to support other people, that's something that we know is really important to people with aphasia for quality of life. So that's something that can be really lovely.  It also just offers a situation where groups and maybe not as constrained as they might be within a more traditional model, especially within a health service, they might have more freedom to to decide where they want to meet, what sorts of activities they want to do, and really take charge of those decisions, which is really lovely.   Lyssa Rome So what about training? It seems clear that non-professionals—peers or volunteers—would need training and you found that most mentions of facilitator training describe programs for those non-professionals or non-SLPs. But what about for SLPs? You write about how there might be an assumption that SLPs would automatically be sufficiently trained and qualified to facilitate community aphasia groups. What kind of training are SLPs getting and what kind of training do you think that they should be getting?    Kathryn Pettigrove  Yeah, I think this is a really interesting question. Facilitator training is going to be the focus of my PhD, actually. So we could see from the review, and the things that we've already talked about today, that it's pretty clear that specialized training to facilitate community aphasia groups well is suitable and necessary. I think, you know, there are a range of complexities to consider and potential risks the facilitation isn't done well. So I think training is something that is really relevant and was advocated for, by lots of the authors in the review as well. But it is currently not something that typically happens as part of speech pathology curriculum. So there might not be any training in facilitation of groups of any kind or of facilitation of groups for people with aphasia and students, especially more and more these days, might get clinical placements in these areas, but they may not. So there's certainly not a blanket level of training and education that is provided to speech pathologists as part of their qualification.  We also know from previous research and surveys of speech pathologists that speech pathologists often feel that their level of knowledge and skill and experience with group services is a barrier for them. This is something that not all speech pathologists feel confident to do and feel that they have the skills and knowledge to do. So I think it's something that is probably a little bit of a gap at the moment in speech pathology training.  I think that there are certainly speech pathologists who are getting really nice training in this area. If they're lucky enough to have a clinical placement where they're working with aphasia groups and they have a clinical educator who's giving good training in this area, or if they work in a center that provides training for staff in order to run aphasia groups. There's certainly some, some great training happening out there, but it's definitely variable depending on where you are and what your experience is.  So in terms of what's happening in training and what should happen in training, in the review we saw a range of different things. Pretty much all training for facilitating community aphasia groups, included information on what aphasia is, especially if it was not for speech pathologists and on strategies for supporting communication in the setting of aphasia.  Sometimes it included things like the underlying purpose or philosophies underpinning the group services, but often it didn't include that information. Sometimes it included training about general principles of group cohesion and group dynamics. There are a range of other things, and I think all of those elements are really important, but they were provided in some situations and not others in different combinations. So a big mixture and in some settings, all of the above were happening. But that was much less common, definitely much less common.  I think something that I think about as well is that I, I think I mentioned this before in the Australian context, we work, currently anyway, much more on a public health model of service for aphasia. We don't have currently a large service of aphasia centers that are staffed specifically for this purpose and that work on a fee-for-service model. So in contexts like that, I think it's even more important that speech pathologists have access to training, so that in that context, they can feel confident and skilled to support groups like this to come about.  So that's something that we'll be looking at in my PhD research with my team. We'll be looking at some training for speech pathologists about facilitating these groups, understanding the roles of different groups and, and where they sit in services for people with aphasia, how to facilitate them well, but also how to support other people to facilitate them who might not be speech pathologists, volunteers, or people with aphasia themselves. So hopefully we'll have more to share on that topic in the coming months and years. So, maybe we'll talk again some more about that.    Lyssa Rome  I would love to, it sounds really important and really interesting. I look forward to reading your research down the road. In talking about facilitation of community aphasia groups, it's been very validating to hear you describe what you found in terms of the nuances of that work. And also really exciting to think about the possibilities for SLPs to sort of deepen the way that we are facilitating groups and that we are supporting groups more broadly. Do you have any last thoughts that you'd like to share with our listeners about that?    Kathryn Pettigrove I feel like I could talk about this topic all day. I just think that groups are so wonderful for people with aphasia and I saw that first hand, not really until several years into working as a clinician, and I think that's probably the case for lots of people. So I think the one thing that I would really say to speech pathologists listening is if you don't currently have any groups happening in your area, have a think about whether you might be able to get something up and running, because they're just such a beautiful way to connect people with aphasia to each other. We know that this is something that people with aphasia say is crucial and so important and meaningful for them in their experience of living with aphasia. There is some, you know, some good research out there that gives some good guidance and information about the facilitation skills that can support good groups. So definitely check that out. I think the best thing is to get started and see for yourself how beneficial they can be.    Lyssa Rome I really agree. It's been a pleasure talking with you. Thank you, Kathryn, for sharing your expertise with our Aphasia Access members.    Kathryn Pettigrove Ah, thanks, Lyssa. It's been a real pleasure talking to you.    Lyssa Rome So on behalf of Aphasia Access, we thank you for listening to this episode of the Aphasia Conversations Podcast. For more information on Aphasia Access and for our growing library of materials, go to www.aphasiaaccess.org. If you have an idea for a future podcast series topic, email us@infoaphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access. References and Resources  Pettigrove, K., Lanyon, L. E., Attard, M. C., Vuong, G., & Rose, M. L. (2021). Characteristics and impacts of community aphasia group facilitation: a systematic scoping review. Disability and rehabilitation, 1–15. https://doi.org/10.1080/09638288.2021.1971307 ​​Twitter: @Kathryn_SLP Aphasia CRE: Website: https://www.latrobe.edu.au/research/centres/health/aphasia Twitter: @aphasiacre Facebook: aphasiacre Australian Aphasia Association: Website: https://aphasia.org.au/ Twitter: @AusAphasiaAssoc Facebook: AustralianAphasiaAssociation

For today's episode, Ellen Bernstein-Ellis, Program Specialist and Past Director for the Aphasia Treatment Program in the Department of Speech, Language and Hearing Sciences at Cal State East Bay, speaks with Melissa Richmond and members of the Slow Road To Better (SRTB) podcast group from the Stroke Comeback Center (SCC). This show celebrates Aphasia Awareness Month and is honored to feature 5 individuals with aphasia who are consumer advocates through their work on the Slow Road to Better podcast. Guests: Melissa Sigwart Richman, MS, CCC-SLP is a speech-language pathologist with 30 years of experience working in rehabilitation with stroke and brain trauma survivors.  She holds degrees from James Madison University and the University of Maryland, College Park.  Her career has included inpatient and outpatient rehabilitation, long-term care, home care, community-based and virtual settings.  Melissa served as a Senior SLP on the inpatient Stroke Recovery Team for Medstar National Rehabilitation Hospital for over ten years and in 2006 became the Program Director for the Stroke Comeback Center in Vienna, Virginia.  During her tenure, the organization grew to three locations starting with a handful of groups to well over 50 classes per week utilizing a life participation approach. In 2019, Melissa moved to the Outer Banks of North Carolina and started the Virtual Stroke Comeback Center which has continued to grow and thrive.  She continues to focus her energy on improving the lives of survivors and families living with aphasia, with the primary focus of helping them get back to the business of living.   Slow Road to Better Podcast Team Members:  Kitti Tong: At the age of 27, Kitti Tong earned the CEO's Exceptional Performance Award at Choice Hotels – the highest recognition in the company. A data analyst, growth strategist, and event facilitator, she founded a Toastmasters Chapter in Maryland and co-chaired several committees for women's leadership and human rights. Kitti's life was changed forever when she was struck by a car walking home from work, sustaining a severe traumatic brain injury. With determination and grit, she relearned to walk, talk and participate in life. She has founded S.A.Y. Younger Aphasia on YouTube to help create awareness of this isolating condition. Kitti's YouTube channel is: S.A.Y -- Younger Aphasia Group - YouTube Pat Horan: My name is Pat Horan, I was a Captain in the Army. In 2007 I was wounded in combat serving in Iraq. After my injury I couldn't talk, read or write. Over the past 10 years the Stroke Comeback Center has helped me improve my writing, reading and speech more than I could have ever thought possible. Today I am a proud father of a new son and an adopted nephew. My continued recovery will help me be a better father and husband.  Erin Adelekum: Erin's Instagram is: stroke.mama Chris Vincent Dante Thomas Listener Take-aways In today's episode you will: Learn how interprofessional education with physical therapists led to the launch of this member-focused aphasia podcast. Find out how the members prepare for the podcast by embracing spontaneous conversation Listen to members share insights on the benefits of being part of the SRTB podcast Hear the podcast team share the insight that even though aphasia is not “leaving it, but we'd like to crush it a little bit.” Crush it, they do!       Edited show notes Ellen Bernstein-Ellis  00:54 Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Ellen Bernstein Ellis, Program Specialist with the Aphasia Treatment Program at Cal State East Bay in the Department of Speech, Language and Hearing Sciences and a member of the Aphasia access podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.  In recognition of June being Aphasia Awareness Month, I'm excited and honored to be today's host for an episode that features the five members of the podcast team from the Stroke Comeback Center located in Vienna, Virginia. They are joining me today along with Melissa Richmond, the speech pathologist who produces the show. The Slow Road to Better has launched over 100 episodes that offer authentic and engaging discussions about how to adapt and live well following brain injury or stroke. They share what keeps them all on the “slow road to better”.  Welcome everybody! And I'm going to start with Melissa's introduction. And then I'll ask the podcast members to introduce themselves.  Ellen Bernstein-Ellis  03:21 Melissa, thanks for joining us today. And now I want to get the rest of this show on the road. But in this case, it's actually The Slow Road to Better. I want to have the team introduce themselves. I'm excited to have the podcast team here today. I was wondering who wants to jump in first with the introduction? Because we got five of you. Any volunteers? So Chris, let's start with you. And could you share with our listeners, what was the cause of your aphasia? Chris  03:48 So I was on the motorcycle on the way to a fire meeting. And some guy didn't see me and ran into me. Ellen Bernstein-Ellis  03:58 So traumatic brain injury.  Chris  04:01 Yeah, absolutely. So 10 years, and I only said, “yes”, “no” and four or five curse words, which is important for firefighter, and military and everything. And then obviously I am talking, walking everything.  Ellen Bernstein-Ellis  04:19 Thank you, Chris. And how old were you when you had this brain injury?  Chris Twenty seven  Ellen Bernstein-Ellis   And how long have you been living with aphasia? How long ago was that?  Chris 10 years. Ellen Bernstein-Ellis  04:31 10 years? Okay, and Chris, one more question. How long have you been a podcast team member? Chris  04:36 Since the beginning? So six, seven years? Ellen Bernstein-Ellis  04:40 Six or seven years? I saw Melissa holding up six too, so 6-7 years. All right. So you're an original team member? Chris  04:47 That's correct. Ellen Bernstein-Ellis  04:48 That is fantastic. Okay, and who goes next? Kitti, are you calling out somebody? Oh, Kitti is volunteering. Kitti  04:56 Kitti, I'm Kitti and three years ago I was hit by the car. But Chris and I, and I was 27. Yeah. And Ellen Bernstein-Ellis  05:10 That was three years ago. And how long have you been the podcast team member, Kitti? Kitti  05:15 Two years, two years and now. Ellen Bernstein-Ellis  05:18 Okay. All right. Well, thank you for starting off. And do you want to call somebody next for me?  Kitti  05:27 Oh, wait, wait, wait.  Ellen Bernstein-Ellis What else? Kitti Yeah. I was silent. But now I'm better. Okay. Let's call Pat. Ellen Bernstein-Ellis  05:32 Thank you, Kitti, Pat, what was the cause of your brain injury? You've shared that with us that you're a veteran. Pat  05:42 Yep. I'm Pat Horan. I got hurt when I was in Iraq. I had been there for a year and for no good reason, I got a shot in the head. And that was 15 years ago. Ellen Bernstein-Ellis  05:56 And how long have you been a podcast member? Pat  05:58 I think I've been doing it the whole time also. Ellen Bernstein-Ellis  06:00 So two original members, right? Kitti is a new kid on the block, I guess for podcasting. Okay, Pat, thank you so much. And I see Erin waving her hand. So you are next. Erin. Welcome. And what's the cause of your aphasia? How did that happen? Erin  06:19 So, I'm Erin. And IG (Instagram) knows me as strokemama.mama. I was 39 When I gave birth to my daughter. And nine days later, I had a stroke.  Ellen Bernstein-Ellis  06:37 How long ago was that again?  Erin   Ellen Bernstein-Ellis Okay, so you have a two year old. Erin  06:42 One and a half. She turns two in July. Ellen Bernstein-Ellis  06:46 Beautiful. Okay. And Erin, how long have you been part of the podcast team? Erin  06:50 I'm going to come on my year in, maybe, October or August? Or September? Ellen Bernstein-Ellis  07:01 All right, close enough. Close enough. So you're kind of new like Kitti. Okay, thank you so much. Thank you, Erin. And last, but certainly not least, is Dante then. So Dante? What was the cause of your aphasia? Can you share that with our listeners? Dante  07:17 It's a long time, but I got my pills and stroke. And about five years and I'm improving and words and is really good. So yeah.  Ellen Bernstein-Ellis  07:33 Thank you for sharing that. And how long have you been a member of this podcast team? Oh, one Dante  07:40 Oh, one year. Ellen Bernstein-Ellis  07:41 About one year? Okay.  Well, I want to thank all of you. I am honored to be here. I am a huge fan. I have been listening to your episodes. And I am just so impressed. I'm just so impressed with what you've accomplished. And we want to talk about that today. Before we jump into your experience, I'm going to circle back to Melissa, just for a minute. And Melissa would you share with our listeners? What inspired you to do this? How did this happen? Melissa  08:09 We were actually inspired by a physical therapy student. I was asked to give a lecture at Marymount University to help the physical therapy students understand what speech pathology was and what their role is, as part of a rehab team. And I brought some members from the Stroke Comeback Center with me to tell their story about living with aphasia. The person, his name was Jimmy McVeigh, said I think you all should do a podcast. And he had podcasting and radio in his background. And he said, I will help you, which he did for a few months. And we first had our podcast out on his feed, which was called the PT podcast. Then, you know what happens with students. They graduate and get jobs and real lives. So he didn't really have the ability to help us anymore. And so the members really enjoyed the podcast and wanted to keep it going. So we just picked up where we were, and use what we had, and started our own feed with the help of some friends. And so in 2017, I guess we officially kicked off The Slow Road to Better on our own RSS feed. Ellen Bernstein-Ellis  09:39 Wow, you kind of just rolled up your sleeves and did it, I think. Melissa  09:43 We did. I always tell people, like file it under things they did not teach me in grad school. Okay, Ellen Bernstein-Ellis  09:50 Okay, share with our listeners who might be thinking “maybe we can do this too” what do you do to set up an episode? Melissa  09:58 Really, what I do is support a conversation among members of The Stroke Comeback Center. The way that I see it, my job is to manage the logistics.  We record on Zoom. I get us all together. And most of our conversations are really just authentic conversations-- things that come up with the members who are really doing their best to live well with aphasia. Ellen Bernstein-Ellis  10:30 I was just going to ask what really makes a good show topic. I think that's what you're kind of referring to here. Melissa  10:36 Yeah, authentic conversations feel like stuff. And some of it is serious. Some of it is people dealing with loss of independence, or they feel like their relationships are different, power is different, financial issues. And sometimes it's, I really want to wear my cute shoes and I have this stupid brace. Or, oh my gosh, I'm trying to wear my contacts and I have to put them in with my weak hand. We had a long conversation about how do I shave my armpit on my weak side? You know, so? Ellen Bernstein-Ellis  11:12 Wow, the real stuff or Yeah, stuff. Melissa  11:14 The stuff that friends talk about when they get together? Those make the best conversations. We don't plan. We don't fret. I don't give out the questions. I pretty much turn it over to the members, and they take control. Ellen Bernstein-Ellis  11:29 Sometimes you have guests and the podcast team asks questions. I listened to the episode this week with a physical therapist, and that was fabulous. Hearing people share their questions about their experiences and, and really very empowering. I mean, just being in charge of your own life and your own rehab. That's, that was my takeaway.  Can I ask who is a good candidate to be a podcast team member? What are your thoughts about that? Melissa  11:56 From my perspective, any survivor with aphasia, who is willing to put out their honest, authentic self---the good, the bad, and the ugly, I don't think it's fair for podcasters to come out and say all the good stuff like I'm doing so great. Even though I had a stroke, life is great. It's not. There are a lot of days that really suck. And there are a lot of days where we shed some tears during this podcast, and we've had a lot of failure. I think it takes a lot of courage and a lot of grit to be willing to come on to this podcast and put your true self out there that I really wanted this, but it was a fail. Ellen Bernstein-Ellis  12:45 I'm just gonna say that that honesty, that grit, that resilience has shined through every episode I've listened to so far. That's why I become such a big fan.  And one more question, Melissa, then let's open it up to the whole team. And that is, what benefits have you seen for the members from being part of this podcast? What are the benefits of this podcast? I'm going to be asking the members that in a moment. Melissa  13:11 I think some of the best outcomes have been the survivors being able to share their story with other survivors. Being able to give back to a community. Being willing to put themselves out there and say, “If I can do it, you can do it.” Building a bridge of hope. Which is what we say in our intro, and that's really what our members want. I think they understand that not everybody has a Stroke Comeback Center. And I think they understand what this center and the impact of having friends with aphasia has done for them. And they want to do that for someone else. So I think that's probably the biggest outcome.  And really, it's a great way for the members to track their communication progress. And I say it all the time. Go back to when you started listening, and listen to your communication. And then listen now. Because when I edit, which is really what I would say is my most significant role is, I am the editor and the uploader of all podcasts, is that it's a record of their progress. And it's amazing. It's really a way for our listeners to go “Well they sound great now, you know, they clearly didn't have that much aphasia.” Go back and listen six years ago and see what it sounds like, because I don't try to make people sound like they don't have aphasia. What would be the point of that? Ellen Bernstein-Ellis  14:54 You just mentioned your opener, and the first time I heard the show, I was completely reeled in by that opener. It just hooked me because, first of all, it starts with someone saying, “Come in, come on in, come on in.” And that's exactly right. You are welcoming people into your lives with aphasia, and you're saying, “I'm here. And I'm going to share.” I mean, that was just so empowering. I'm going to play that clip. It's engaging. It's collaborative. Right away that that opening captures everything. So let me play it for the listeners. And then we'll come back again. OPENING ROLL OF SLTB PODCAST PLAYS Ellen Bernstein-Ellis  16:40 I hope the listeners enjoyed that clip as much as I have. I just want to say it's fabulous, every part, every line, but maybe I have a favorite piece. And that's when Pat* says something like, you know, aphasia isn't going to go away. But we want to crush it. And I think that's what happens with every episode, that determination, just to crush it.  (Note: original recording says “Chris” instead of “Pat”, but the correction is noted later in the recording.) So with that, let me throw out a question to this fabulous team. And that is what do you all think is one public benefit? What do you think listeners can take away from this? And what's a personal benefit of the show? So if you could just to speak to either a public benefit or a personal benefit that you you have experienced? Do I have a volunteer? Is Kitti going to call on somebody for us?  Erin  17:37 It's Erin. I think the public benefit is seeing how funny, or sarcastic, or you know, kind, or the troubles that aphasia survivors go through and realizing that they are just as funny, or even more funny, than when they didn't have aphasia. And then I think the personal benefit is having a group that I think, the personal benefit for me is having a group of aphasia people to talk with. And I know that I am so much better, you know, the aphasia is so much better than when I first started the podcast. Ellen Bernstein-Ellis  18:43 That's beautiful. So it's really the sense of camaraderie. And it's also the sense of sharing with others. You're not alone, just normalizing this whole thing. Erin, thank you, and who else wants to share any response to this first question? I see Kitti raising your hand. Kitti  19:03 Hi, I'm Kitti.  In my podcast, I'm full funny, half philosophy, I'm half joking, I'm half serious.  And now, before I was still me, and now I'm still me. Just mindset you know, just mindset. Ellen Bernstein-Ellis  19:24 So being yourself is part of the maybe public benefit because you can let people see who you are. You're a person you're still you. What's been a personal benefit for you Kitti? Kitti  19:35 I'm still me like before and after I'm still me, you know what? Change, I have aphasia but I am still me. Before I was speaking convention. Now, I am still convention. You know? Pat  19:51 I think it's really, like Ellen Bernstein-Ellis   Is this Pat? Pat Oh, sorry, I am Pat. Yeah. I was also Pat, the one that said--I'm sorry, I'm thinking right now, I shouldn't think—It wasn't Chris that said it. I said I was the one who said, “I'm the one, I would crush.”  Ellen Bernstein-Ellis  20:09 Oh, I got that wrong.  Pat  20:11 Yeah, even you it happens to you. Ellen Bernstein-Ellis  20:14 Absolutely, oh heaven's, yes.  So Pat, thank you for that. So we'll put the tribute where tribute's due. Sorry, Chris. I'm gonna toss that one over to Pat. So Pat, what's your, Pat  20:23 I just think it's like, like Kitti was saying, like how she's doing the YouTube and stuff. But like, she went last year--I think, she went down--she went to Vegas to go talk with some other people, you know. And I've been, you know because I got hurt so many years ago, but I've got to go to other colleges around here. I used to have a working dog and I, (unclear) dog, they asked me a couple times to go and we'd go and talk to--I can't remember where we went, somewhere in Maryland. And there was like, over two or three thousand people there that I had to talk with about my dog, Wilson. And it was funny because Wilson was perfect. Like one time, it was really great. We went to, Chris what was that name of that college we went to? Marymount…. Erin  21:22 Chris and you… went to Marymount? Pat  21:24 So we were there, was that for PT maybe? And we did—that, that was, sorry Chris, her name was Kim. And then me. I don't know, there's a bunch of students there. And Melissa was there, but  she told us that we weren't allowed to talk, or she wasn't gonna talk, no matter what.  Ellen Bernstein-Ellis  21:49 Oh, so it was all on you guys. So Pat, are you telling me that part of the benefit from this podcast is that you've really gained kind of the confidence to go out into public and share these messages? Do you think that's been one of the benefits of working on this podcast? Or are you just saying that it's a sense of advocacy that you've really become even a stronger advocate? Pat  22:11 So that's the problem for me is, I don't know big words. Ellen Bernstein-Ellis  22:15 Absolutely. So you stand up for yourself, you're empowered. Pat, I think you're very empowered. Pat  22:21 Or, just like the movie, I'm just “living the dream”, you know. (laughter) I want to go out and have fun. I want to enjoy—I don't want to get into this whole thing with me, but I'm excited that I lived, you know. And so I'm just, like to get out there, you know, when I can talk with people and talk and stuff. And I'm not perfect. I'm not, I'm not the king of the world. I'm not the best, but I just want to help other people. That's what we started years ago. Ellen Bernstein-Ellis  22:47 So that's one of your motivations, then. You're just here to help others too, so a real sense of altruism, and just having that role of a mentor and a helper. That's great. Thank you.  Dante or Chris, do you want to jump in on this question at all? What's the public benefit or a personal benefit of this podcast? Dante  23:09 Dante. The beginning talk, and very little, but then more and more. Sentences and just driving and more and more and more. Like, the mall and talk, and just nothing, and I gain and more and more. So yeah, it's definitely improving. And just more and more and more and group and, and yeah, just flew in and just really talk, and is leaps and bounds and expressing and laughing and….  Ellen Bernstein-Ellis   That's beautiful, Dante. Dante Definitely not sound it out, but just expression and reading and on YouTube. Just more and more and more expressive. Just talk and let me know, and it's definitely getting much better. Ellen Bernstein-Ellis  24:12 And that's an important message for listeners to hear. I think that people continue getting better. There is just a better. I think that's so important. In your last episode, you guys talked about that whole, I call it the “P word”. When people are told there's a plateau, is the “P word”. You know when you. are told that you're gonna get better for six months and stop. And you guys kind of blow that through the roof and say, “No, we keep getting better year after year, because we're working at it.” So, Chris, is there something you want to add to this part of the discussion about a public benefit or a personal benefit of the show? Chris  24:52 Yeah, I mean, so in the world, you have aphasia or TBI. And a lot of people don't have what we have. It kinda--Melissa shows us what the USA and then all over the world. I mean, there's a lot of people that have aphasia or not, and just listening and.. Ellen Bernstein-Ellis  25:28 Right, your show has had over 50,000 downloads. And we know there are over 2 million people with Aphasia just in the US, and that doesn't  even touch the rest of the world. So, Chris, you're saying it gets the message out there. And as Melissa said earlier, there's not --not everybody has access to an aphasia center like you guys all have. Access to your fabulous Stroke Comeback Center. So thank you, Chris, way to kick this off-- your discussion.  And I was wondering if you'd be willing to share any important lessons with the listeners about your podcast experience? You know, what, what type of insights or good lessons or hard lessons have you had with being a podcaster? Your humor is definitely been a good lesson for me, you guys can just let it roll. And that's a part of the magic, I think, is the humor you share with each other. And you call each other out? That's for sure. Chris  26:22 Yeah. laughing And then there's some days that are not happy. It's sad. And it's just… and I think there's laughable moment on each episode. Some are very touchy. But you know, I think that is podcast. And that's what the benefit of listeners. We are not happy all the time. Ellen Bernstein-Ellis  27:03 Yeah, that's very real. And it sounds like this is really storytelling. It's sharing your life. It's the lived experience here. And that's what you're bringing to the listeners. Any other important lessons that you guys can share with us? Kitti? Kitti  27:19 Hi, I'm Kitti. For someone say that I was crying, or I was joking, or I just didn't make sense. And I said, “Do you know what I mean?” And then Melissa said, “I don't (know) what I mean. (Laughter) You know, just okay. One second. Okay. I'm feeling like that we are podcast. Feel like that, what is aphasia? What is different? And what is my benefit? Not me. Not Chris. Not Dante. Not Ellen. Not Pat. But what is most me? Do you know what I mean?  Ellen Bernstein-Ellis   Help me with this. Melissa  28:09 This is where I have to say no, I don't know what you mean. Pat  28:12 I think this is what you might say, Kitti, just let, if I'm totally wrong, you tell me. But like when you go to see any PT, OT, or speech or whatever. And I've had some of these people that are for speech, were like, you know, this and that, you got to do this. And then, just like, but wait, you're doing the same thing with all the, what the people that have a, you know, a stroke or a TBI. And you're like, wait, you can't tell everybody the same? We're all different people, all of us, you know. So? Is that what you're trying to tell Kitti at all? Or am I totally wrong? Kitti Yes. Ellen Bernstein-Ellis  28:54 And nice job, Pat. And Kitti. Are you also saying that sometimes because it's not about any one story or any one person, but it's the bigger piece of everybody helping each other that you… Kitti  29:13 Yeah, like we are human. The normal people is human. We are human. We are both human, not like disability, but different ability, you know?  in-Ellis  29:26 So each of you are telling your story in your own way.  Any other important lessons that you would want the listeners to understand about this podcast experience? And if not, I have other questions, not to worry, I don't run out of questions. Melissa  29:40 I would throws this out there that occasionally, members get a little blowback, primarily from their family. As I said, we do have the ability to edit. We will have conversations that we get to the end of and somebody says, “You know what? You can't put that out there.” And I'm okay with that. And I don't. But sometimes people do share things that they don't think their families or anyone's going to really respond to. But they do. And sometimes, a lot of times, it's just really positive. I think their families hear them have a conversation just amongst friends. And they're like, “Oh, my gosh, I didn't even know it could sound like that.” Sometimes, families get their knickers in a knot a little bit about someone's perception of a situation. And then I get an email that says, “That is not how that happened.” Ellen Bernstein-Ellis  30:42 Okay, so that's an important lesson. That's something that could happen as a podcast team. Okay. All right. Thank you, Melissa. Erin, you look like you want to say something or you. Erin  30:52 So when we have a guest speaker, Melissa tells us, you know, if the guest speaker wants us to ask questions, or the group have questions for them, I will ask. But I think it's just, you know, what did Dante say? “A free for all?” No. Chris  31:21 So honestly, that is 99.9%. (Laughter) Free-for-all. Ellen Bernstein-Ellis  31:28 All right, everybody seems to respond resoundly to free for all. Yes! In the best sense of the word. So it's spontaneous and it's authentic. And it seems to me that you are learning from each other, as well. And that you kind of call each other out to be your best. I mean, that's what I'm seeing. Do you guys agree that you learn from each other in this situation? Chris  31:54 Absolutely. Dante  31:56 No Filter? (Laughter) Ellen Bernstein-Ellis  31:59 What was that? Dante? Dante  32:00 No Filter. No, no plan, nothing. Just, I'm sorry, I'm Dante. Just the plan, the question, just wing it. And expressions, and what did he say? Or just different groups, and just no filter? And you say it, and it gets better, but still more and more and more, just wing it. Chris  32:32 And so the funny thing. I'm sorry, Chris, by the way. So Melissa will tell us, “Hey, this is what we are discussing.” And then 30 minutes later, that is not at all (laughter) what is the topic. Now it is so different from the topic. And then 30 minutes later, you are talking about, “What are you doing for lunch?” Or you know, or the tying the shoes or something like that. But that's one on my part anyway. But it's so random. That, that's what we love, because it is whatever I feel that day. That's it. Erin Yeah! Pat  33:35 I don't think it's 30 minutes. I think it's about two or three minutes. Ellen Bernstein-Ellis  33:39 It goes so fast. It feels like the conversation goes so fast. Erin  33:42 Melissa will get us back on target. Ellen Bernstein-Ellis  33:45 Target. Uh, Melissa, we'll get you back on target sometime.  Group: (Laughter; “eh” verbalization meaning “not so much”.) Ellen Bernstein-Ellis   Okay. We have just a few minutes left, talking about two or three minutes, it feels like it's been two or three minutes. But this is June, which is Aphasia Awareness month. And I was wondering if any of you have any messages you want to put out there as we celebrate June as Aphasia Awareness Month? Any message for the listener about that? Chris  34:13 So, Do More 24…  Dante Slide in...slide in. (Laughter) Ellen Bernstein-Ellis  34:18 Oh my gosh, I think that was quite a transition. Everybody's endorsing that. And that is…? Group (laughter) Chris Oh yeah, Pat It's too late. Melissa  34:24 It's gonna be in May, Chris. It's gonna be too late. But, good try.  Chris Damn it!  (Group laughter and some good natured pandemonium.) Pat Different math. It's different math. Ellen Bernstein-Ellis  34:38 I've never had swearing on the show before, but that's okay. It'll be the first. Pat  34:43 Different math. Ellen Bernstein-Ellis  34:43 Chris, I think you're saying it's never too late to support the Stroke Comeback Center. And that's just a great example of seizing the opportunity for advocacy. And I thank you for that. What else for Aphasia Awareness Month? What other messages can we share? Kitti  35:01 Maybe, if your friend just say, “Hey, do you know what is aphasia mean?” Just teach people, one friend, or five friends… Ellen Bernstein-Ellis  35:17 One person at a time, if that's what it takes.  Kitti Yes. Erin  35:20 And this is Erin, stroke.mama here. M-A-M-A Ellen Bernstein-Ellis Excellent. Kitti  35:27 Is SAYyoungaphasia channel. YouTube. Check it out. Ellen Bernstein-Ellis  35:31 You guys are getting it out there! Erin  35:34 I want to say, if you have a friend with aphasia, and you go to dinner, or a group, you know, party with them, don't let them---include them in the conversation. I take a long time to speak. But I have something to say, you know, and I just want to be included. Well, I don't have a problem, because I will stop the conversation if I'm not included. (Laughter) Ellen Bernstein-Ellis  36:18 I just want to say this is an amazing, amazing team. I am so honored that I got to have conversations with you. And I am so appreciative, as a speech language pathologist, of how you are helping other people with aphasia. Not only people with aphasia, but I think the family, the community, and I hope other speech language pathologists who listen to this and get a sense of how important it is to give voice, to allow people with aphasia to tell their story, and to tell it in a real way. And I want to thank you for that. And I really treasure, you have something special here--your relationship with each other, and your positive belief in yourself and each other. So thank you. Thank you again, thank you for sharing your expertise with Aphasia access, and with all our members.  So on behalf of Aphasia Access, we thank you for listening to this episode of Aphasia Conversations Podcast. I'm going to tell Melissa that if she wants to collect any of these handles that have been shared today, I'll put them in the show notes. For more information on Aphasia Access, and to access our growing library of materials, go to www.aphasiaaccess.org. And if you have an idea for a future podcast series topic, email us at info at aphasiaaccess.org And thanks again for your ongoing support of Aphasia Access. References and Resources  For more info on the Stroke Comeback Center (SCC) use our website: Home - Stroke Comeback Center Follow SCC on FaceBook at: Stroke Comeback Center | Facebook For access to episodes of the SCC podcast, Slow Road to Better: The Slow Road to Better on Apple Podcasts Erin's Instagram: stroke.mama (https://www.instagram.com/stroke.mama)   Kitti's social media handles:   S.A.Y -- Younger Aphasia Group - YouTube   https://www.instagram.com/say.younger.aphasia/ or https://www.facebook.com/groups/say.younger.aphasia    

During this episode, Dr. Janet Patterson, Research Speech-Language Pathologist at the VA Northern California Healthcare System, speaks with Dr. Mary Purdy about aphasia rehabilitation, Interprofessional Practice (IPP) and Interprofessional Education (IPE).    In today's episode, you will:   Learn how IPP and IPE are related, in concept and practice. Hear about the similarities and differences in IPP in inpatient settings and outpatient settings. Listen to ideas on delivering client-centered treatment in an atmosphere of IPP.   Interview Transcript: 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 colleague and friend, Mary Purdy, about Interprofessional Education, or IPE, and Interprofessional Practice, or IPP. Dr. Purdy is Professor and Graduate Program Coordinator in the Department of Communication Disorders at Southern Connecticut State University in New Haven, Connecticut, and a speech- language pathologist at Hartford Health Care Rehabilitation Network. Mary has been involved with educating graduate students in the principles and practices of IPE for several years and is currently Chair of Southern Connecticut State University's College of Health and Human Services IPE committee. Additionally, she actively engages in Interprofessional Practice in the outpatient setting.  As Mary and I start this podcast, I want to give you a quick reminder that this year we are again sharing episodes that highlight at least one of the ten 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 Podversation Episode #62 with Dr. Liz Hoover as she describes these gap areas, or go to the Aphasia Access website.  This episode with Dr. Purdy focuses on gap area five, attention to life participation across the continuum of care, and gap area six, training and protocols or guidelines to aid implementation of participation-oriented intervention across the continuum of care. We focus on these areas through our discussions of IPE and IPP. Two previous Aphasia Access podcasts included conversations about IPE, Episode #7 with Darla Hagge and Episode #78 with Michelle Gravier, Albert Mendoza and Jennifer Sherwood. For so many reasons, IPE and IPP are crucial in creating and sustaining high quality aphasia rehabilitation programs. I hope our conversation today adds to the growing body of knowledge in IPP and IPE. With that introduction, I would like to welcome Dr. Mary Purdy to Aphasia Access conversations. Thank you, Mary for joining me today to discuss aphasia rehabilitation, IPP and IPE.  Mary Purdy: Well, thanks Janet. And thank you. It's really good to be here.  Janet: Let me just jump right in then Mary to say we've heard a lot about Interprofessional Education, or IPE, and Interprofessional Practice, or IPP. How do you define and think about these two related, but different concepts, both in general, and as they apply to aphasia rehabilitation?  Mary: Well, in general, when we think about IPP, the whole concept of collaboration, we know, leads to improved health care outcomes, and that's what we're all after, with our people with aphasia. In terms of the education students need, to learn how to collaborate with other professionals, and this can be quite complex. First of all, they need to understand what their own roles and responsibilities are, just related to their profession. Plus, they have to learn to work as a member of a team, and not just operate on their own, solo. In order to have students become comfortable in these roles, we have to provide them with opportunities to learn, and those opportunities, I think, really need to be both didactic and interactive.  Specifically, to aphasia rehabilitation, in addition to just general education about collaboration, students need to understand that individuals with aphasia really do have complex needs and to meet these needs, we have to focus on the patient. We hear a lot about patient-centered care, and that's really what it is that we need to be doing. So, students need to have some training in how to communicate with people with aphasia, and they need to get to the point where they can be comfortable training others to help communication. We have to help our patients identify what their goals are.  Interprofessional collaboration and practice, and patient-centered care really is all about the patient goals. They have to be really included with the whole program. Students have to be comfortable in aiding patients in identifying their goals, and they have to understand how other professionals can help meet those goals. You know, when we work with our clients, we of course, are focused on communication, but our patients are so much more than that. We have to look at them as the entire person that they are and recognize that we as speech pathologists can't take care of all their needs by ourselves. So, we have to bring in other professionals to help the clients meet their goals. The other thing is, we know that patient's needs change, as they adjust to life with aphasia, and they move throughout the continuum of care. As those needs change, the team members may also change, so students need to recognize that collaboration and interprofessional practice is always in flux. It's an ever-changing concept, in terms of practicing interprofessional collaboration. As clinicians, we need to practice what we preach, we have to remain focused on our patient, what their needs are, what their goals are. It can be difficult at times given time constraints and other constraints within the healthcare environment, but we really do need to try to make the effort.  Janet: Hearing you talk Mary, I'm envisioning a student, a graduate student, who is focused in trying to learn everything they can about the different aspects of communication disorders, not to mention everything about aphasia, and now we're asking them to learn more. That is, what an occupational therapist does or what a physical therapist does and how to organize that. Is that a daunting task for students?  Mary: I think so. As I said, they're learning what they themselves have to do, you know, what do I do as a speech-language pathologist. And so, when we start throwing everything else at them, I can imagine it's very daunting for students and it's hard to try to design educational opportunities that take into consideration where the student is in their whole educational process. I think there's a timing issue of how to be introducing all of these different concepts throughout the student's education.  Janet: Mary, as you recall from the introduction today, the White Paper authored by Dr. Simmons-Mackie identified gap areas in aphasia rehabilitation across the continuum of care, two of which I think relate to IPE and IPP. I would like to ask you about your thoughts regarding IPE and IPP and how they intersect with the LPAA model at three times: first, during graduate education as we teach and model for students who will become clinicians; second, during aphasia treatment in inpatient medical facilities; and third in the outpatient setting, including community aphasia groups. Let's begin with the educational environment. How do you teach and model IPE for your students? Can you tell us about some examples you use and how your students respond to your IPE activities?  Mary: First of all, in the educational environment when we're first really training the students, this is truly the IPE portion where we're preparing the students to learn the process of collaboration. Specific to aphasia, I usually start in my aphasia class. We have a couple of different case studies that we go through, that provide information to students about stroke, the professionals involved with stroke, then the person with aphasia. Through the case studies, I'm introducing them to the professions, and then to aphasia and how the professionals work with aphasia. Another thing that I do in class is, every semester students will interview a person with aphasia. They'll do a little language screen, and they'll interview a patient that comes up from our clinic. Recently with COVID, we've been doing this over Zoom, and it works fine. As part of that, they are instructed to ask the clients about their goals; what goals do they have both for clinic in terms of their communication, but also in general. Then later, we discuss what is needed to help the patient accomplish the specific goals, both within our own profession as well as outside. So, in class, there's a general introduction to IPE.  In the clinic, we've had some fun activities, very informative from multiple perspectives. One thing that we do is we have nursing students who are enrolled in their community health class, come into the clinic to perform a health intake with our individuals with aphasia. Now prior to that, our students have given the nursing students a little bit of background on aphasia, and we have the students view a video about it. And then when the nurses come into the clinic, they work with our students there together during the interview process. The nurses go through and ask all their questions and, I shouldn't laugh, but sometimes it's amusing to see the nursing students' reactions. They are just kind of flabbergasted in terms of, “okay, now what do I do?” For one client, the nurse was asking, the client, “Do you have a history of heart problems, cancer”, blah, blah, blah, blah, blah, and the client was responding “Yes” to everything. The nurse was saying “Oh, my gosh, you poor thing you've just been through so much”. I was in the observation room with the wife, who was saying he didn't have any of those problems. So, it was actually a very good learning experience for the nurse. Then our student jumped in and started using more pictures to try to help with understanding. We provided the supported communication prompts to help with that.  We've had therapeutic recreation come into the clinic, and we've had a few trips into the community. We've gone bowling, and that was interesting. The students learned about devices that are available to individuals who have hemiparesis. There are these stands that the person puts the ball on and just kind of pushes the ball off this rolling stand and it goes down the alley. Our students learn a lot about accessibility and what can be done to help our patients get around in the community a bit more. That's a couple of examples of what we've done in the clinic.  We also have worked with the Marriage and Family Therapy department to provide support to the spouses of the individuals with aphasia. I think that's another important aspect to make the students aware of, that aphasia doesn't affect just the person who has it. It affects everybody, and the spouses need support as well. Our students have sat in on and facilitated some of those sessions as well.  Some other opportunities our students have had are again related to assessment. We had our students go to the nursing lab, where they were doing simulations of assessments, and our students played people with aphasia. That was a lot of fun, and I tell you, it told me a lot about how much our students really understood about aphasia; it gave me some very good feedback as well. We've had a variety of different kinds of activities to educate other professionals about aphasia, to educate our students about the other professionals. So, it's been a lot of fun.  You asked about how the students responded to these activities, and an important component is the debriefing. After every activity, we always talk with the students about what they thought of the experience. They obviously they love the hands-on activities, they find those to be much more beneficial than the case studies and what have you. They've talked about how much they've learned about the patient; they're stunned often with the complexity of medical issues that the patients have, and it's sometimes led to new goals in our therapy sessions. We've had some goals where we would use aphasia friendly educational materials to inform the clients about their medications. We did roleplay scripts for community reentry, so that's been helpful for the students. It just increased their awareness overall. Their feedback was that it forces them to really look beyond just communication. And it also helped their interactions with the clients, kind of viewing them and accepting them as a real person, not just a client with a communication problem.  Janet: It sounds like such a rich experience for your students, when they're hearing it - the case studies, it's one thing to see those words on the piece of paper that says the patient has this diagnosis or has had that treatment, and then to see this person talk about, or try to talk about, whatever their concerns are, or their issues. I imagine the students must just be on one hand overwhelmed with everything, all the information that's coming to them, but very grateful for this experience, the whole interprofessional education experience,  Mary: They sometimes are overwhelmed, but I think the benefit outweighs the degree to which they're overwhelmed.  Janet: I'm sure that you can share stories of your own, thinking back to assure them that other people experience this, and you'll get better with time, and it will feel better and more natural in these kinds of conversations the longer you go in the career in the field of speech language pathology. Mary: I always tie in my personal experiences when I'm trying to explain one of these concepts. It does make it a bit more real to the students.  Janet: Well, that actually leads into my next question, Mary. You are, in addition to being the university faculty member, you are also a practicing clinician, and you use IPE and IPP in your work. How do you incorporate the ideas and the principles of IPP into your clinical activities, when you're in the inpatient medical settings, we'll talk about that setting for just a few minutes, the inpatient medical setting?  Mary: That's actually where I started my clinical career, in inpatient rehab, and it's always remained kind of dear to my heart, although it was very different back then, where patients would stay inpatient for three months. Two weeks they get now if they're lucky. In the inpatient situation it's a little bit easier to do collaboration because there usually are established team meetings. There are some requirements for accreditation related to collaboration. Though I have to say, that just having a group of individuals come together for a meeting doesn't necessarily include collaboration. I think it has to be approached very thoughtfully, in terms of what are we going to do to differentiate true interprofessional collaboration from just a multidisciplinary team? I think one of the main differences is truly staying focused on the patient and having more of a problem-based approach. We look at what are the issues with the patient and who needs to come together to address those issues. So, the collaboration is kind of built in through these regular team meetings.  In addition to that, though, I think the inpatient setting provides some unique opportunities. I've done a lot of co-treatment with PT and with OT. Just last week I was down in our makeshift apartment, it's actually a model of an apartment that has a bedroom, kitchen, everything, and I was working with OT. The OT was trying to help the individual manage with their one hand and also be conscious of the safety issues. The inpatient setting provides the opportunity for us to do some co-treatment as well. I've worked with PTs and OTs, trying to help the patient ambulate. We work on carryover of each other's techniques, and we educate each other about our own professions. Even at that level we have new OTS coming on the scene who had never worked with a person with aphasia. So, the co-treatments allow us to provide some of that education in a very naturalistic environment, which obviously is helpful to the patient. We also work together to figure out which discipline needs to address, what aspects of a problem. If a patient is having issues with problem solving, or flexibility, speech can address that, or OT can address that. So, we kind of work out who's going to do what, in a very non territorial way, which is fun.  One of my favorite projects that I did was a self-medication program. I work very closely with nursing to help educate the patient about their medications, what they're for, what the side effects are, what to do if there's a problem, and how to fill their med boxes. I took a lot of the information that the nurse was providing the client and incorporated that into my own therapy sessions in a much more aphasia friendly manner. It really is helpful in helping the individuals become a bit more independent. Anything that we can do to help increase their independence is so good for their psyche, for their motivation, and for their own self-worth. Not having to depend on a spouse to give them their meds is a big accomplishment. We also follow through on using techniques recommended by one profession in the other settings. So, I will make sure that I have patients positioned properly, when I'm working with them; I make sure that client has their communication book with them, or the OT would make sure the patient has the communication book when they're in the OT session. There's a lot of ongoing discussion about what we each need to be doing to help one another and help the patient.  Janet: That actually, it's both education and its practice, isn't it, because whatever you're learning and teaching new about aphasia in your classroom is also being shared, if you will, with your colleagues at the hospital, and they're teaching you, and you're doing it within the confines of the needs of a particular patient. So, I imagine that the interprofessional practice part, the education part of that, is just always there, is ongoing, and you don't make assumptions that the OT or PT automatically understand your goals in speech, nor do you automatically understand theirs for occupational or physical therapy. Mary: The education component really is carried on throughout, not with students, but as you said, with the other professionals. We're all always learning. I've been in this practice for more years than I care to count and I'm still learning things. That makes things fun and exciting and never boring.  Janet: When I think back, about the importance of LPAA and the importance of patient- centered care, when I think back on some of my practice 100 years ago, I wish I would have done things differently for patients. I could have been a much more effective clinician, but I wasn't thinking in that direction at that point in time. But I am now and I'm hoping that our listeners will also realize there's a lot out there that we can learn from, and we can impart to other professions as we all work to help patients. Mary: I cringe at some of the things that I did 30 years ago, but you live and learn. The end goal is always the same - we want to do what we can to help our patients. We want our patients to be able to lead fulfilling lives, how we get them there has changed, a little bit.  Janet: You've talked to us now about some of the activities you use when you educate students in IPE, and then you've talked about some of the things you do in Interprofessional Practice when you're in the inpatient setting. The third setting I would like to talk to you about is community aphasia groups and the outpatient setting. You may be the only speech-language pathologist on the staff, or you may not have access to other rehabilitation professionals in the outpatient setting like you do in the inpatient setting. How do you see IPE and IPP intersecting with the LPAA model in these clinical settings, either outpatient settings or community aphasia groups?  Mary: Personally, I don't work with community groups outside of the university and I think groups within a university are very different than groups in the community, you know, separate from an educational environment. I continue to work providing outpatient services to single individuals with aphasia, and without a doubt, thinking about collaboration requires more effort. Most of the time, the patients have already finished their OT and PT by the time they get to the Outpatient Center, at least where I am. I don't have those professionals nearby so collaborating would be difficult. But the thing is, even though they may have been dismissed from those other therapies, that doesn't mean that the patients don't still have needs, and their needs now might be very different than when they were discharged from the therapy, three months, or six months prior. I think we need to remain patient centered and always be thinking about, “What is this person doing? How fulfilled is this person? What are their goals?” The patient has been living with aphasia for a while now and so their needs have changed. They are, in my experience, branching out a whole lot more or wanting to branch out more so we have to know what their goals are for life participation, what is it they want to accomplish? Those goals may be completely unrelated to what I, as a speech-language pathologist, will be doing.  For example, one of my patients had always done knitting, she just loved to knit. She was lamenting that she wasn't able to knit for her new grandchild. I was asking her what was the main problem with it? Of course, she indicated her hand, she couldn't hold the knitting needles. I briefly talked with our OT in our clinic, and asked, “Would this be something that you think we should get another referral for? Is it something that you could really assist her with?” And the OT said, “Well, yeah, sure.” So, we did get a referral for her to get an OT eval, and the OT gave her a built-up knitting needle. I was familiar with them for pens, but I had never even thought of one on a needle. That enabled the patient to continue with her knitting. Granted, she was slower, and she might have missed a stitch or two, but she was so much happier that she was able to do that. And so, OT accomplished the goal of getting this patient back involved. I guess the moral of the story is, even if we're not directly working with the other professionals, they may be accessible, or we can get them re-involved, and so we need to keep an open mind about that, and not just think that, okay, they're done with PT, they're done with OT, because there definitely are things that can be done outside the realm of communication.  Having a good understanding of what our patients' skills are and what their challenges are, can also help us set realistic goals, help our patients set realistic goals. I remember working with a client a while ago who was living at home but needed assistance to get out of the house, to transfer into a car, and so on and so forth. I wasn't really even thinking about that, you know, the patient made it to my office, so I just kind of assumed that they could do whatever. The patient wanted to go back to going out to eat so we were working on scripts. I talked about this with the physical therapist as the patient was still receiving physical therapy. The physical therapist said to me that it's okay if she wants to work on that, but she's not going to be able to get into that restaurant, it's not accessible, physically accessible, and the patient has so much trouble getting out of her home into a car. The whole thing is very laborious and so the family doesn't really want to undertake that challenge at this point. They are willing to do it to get her to therapy, but the family isn't really ready to get her into the community yet. That just made me take a step back and think, “Well, duh! Yeah, of course!” I didn't have my goals aligned with what other professionals had for goals and what the patient had. Understanding more about our patients really can help us all, patient and professionals, align our goals, so that we can accomplish them in a more efficient manner. If a patient needs some therapy and isn't receiving it, we can always ask for referrals; they might be denied, but it doesn't mean we can't ask for them.  Janet: What you said made me think of a couple things. Something you said earlier that aphasia doesn't just affect the person with aphasia, it affects the family. So, when you're talking about setting goals, like your restaurant example, thinking about the PT goals, the OT goals, the family goals, the patient goals - maybe the patient's goal of wanting to be able to order in a restaurant could have been redirected to learn a script in preparation, maybe, for finding a restaurant script later on, but now, at this moment in time that isn't the best direction, as you said. So, it just makes me think really that aphasia is about the family, it is about more than just the person with aphasia.  Mary: Oh, absolutely. Patient-centered goals definitely are centered on what the patient wants, but I think have to be considered, along with what the family wants, and what's realistic. They're the ones that are existing together. They are the ones that are ultimately responsible for carrying out, or not carrying out, these different things. I think everybody needs to be on the same page. Janet: Something else you said also made me think - the knitting needle example. In addition to achieving a goal, or to listening to the patient, you're also modeling for the patient how to ask for something, or how to think about another referral, because a new set of skills has developed, or a new set of problems has developed, now that you're further along in the aphasia journey.  Mary: I think it's a part of our phase of therapy in general, I think increasing self- advocacy is a critical component, making them aware of what their rights are, and what they can be asking for and demanding. Then giving them the tools to do that is a major component of our therapy,  Janet: That is exactly what LPAA is, asking what it is the patient wants to do, looking around the environment, and asking how we can help the individual achieve those goals, and the family achieve the goals as well. So, your comments and ideas about IPE and IPP, I think are pretty exciting, Mary, I hear the excitement in your voice as you're talking. But I also think they're crucial to the way that we should be thinking about how to deliver rehabilitation services in the coming years and months ahead of us.  As we draw this Podversation to a close, what are the pearls of wisdom or lessons learned, that you would like to share with our listeners? And in particular, what practice suggestions might you offer to clinicians, as they try to incorporate principles of IPE and IPP into their own practices?  Mary: Well, I've certainly learned a lot. I've learned my lessons as I've moved through this journey. I do have fun with it, so it's always worth it. In terms of education, for educators and IPE, I think I would recommend starting small. Sometimes my excitement about IPE has led me to be a bit over ambitious, and that can get frustrating for me, it can get frustrating for my colleagues, and for my students. So, starting small I think, is a good place to start. We might set expectations that are not necessarily realistic for our particular environment or for a particular academic department. I think it's important to know that we can be effective with small changes, small changes in our curriculum, like incorporating the activities into the aphasia class. Another thing that has been helpful is finding a group of like-minded colleagues, because a lot of times many of these projects are carried out on our own time in the educational environment, so you have to be with others who are as excited about the project as you are to really make it work. I'd suggest getting involved with schoolwide Interprofessional Education efforts if they exist. If they don't exist, jump in and try to create them so that they can exist.  For clinicians, I think we have to practice what we preach - more follow through on the different principles that we're instilling in our students. I think as clinicians we have to stay patient-centered and think beyond just communication. Similar to what I mentioned for educators, start small. A meaningful change in the life of a person with aphasia doesn't necessarily require great amounts of time and effort. If we just think small, think of individual goals, little changes can have a big impact. Then finally, I would say, get to know your patient and be their advocate.  Janet: Those are good lessons for all of us and not always easy to do, but certainly worth the doing, I think.  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, Mary Purdy, for sharing her knowledge and experiences with us, as she continues her exciting and important work in IPE and IPP.  You can find references and links in the Show Notes from today's podcast interview with Mary Purdy at Aphasia Access under the resource tab on the homepage. On behalf of Aphasia Access, we thank you for listening to this episode of The Aphasia Access Conversations Podcast. For more information on Aphasia Access, and to access our growing library of materials, please go to www.aphasiaaccess.org. If you have an idea for a future podcast topic, please email us at info@aphasiaaccess.org. Thank you again for your ongoing support of Aphasia Access.  References  purdym1@southernct.edu  Purdy, M. H., Hindenlang, J.& Warner, H. L. (2017). "Interprofessional Education: Take the leap." Presentation to the AMERICAN speech-Language-Hearing Association, November 2017.  Gurevich, N., Osmelak, D.R. & Farris, C. (2020). Interprofessional education between speech pathology and nursing programs: A collaborative e-platform curriculum approach. Journal of Interprofessional Care, 34(4), 572-575. https://doi.org/10.1080/13561820.2019.1657815 

During this episode, Jerry Hoepner, a faculty member in the Department of Communication Sciences and Disorders at the University of Wisconsin – Eau Claire, speaks with Dr. Audrey Holland about receiving the 2022 Robin Tavistock Award.    In today's episode, you will: Learn about Audrey's recognition as the Robin Tavistock Scholar for her lifetime of achievements.  Learn about Audrey's humble beginnings and how she moved out of the Skinner box and into functional communication.  Learn about Audrey's philosophy on mentorship and being a mentor to the masses.  Audrey shares advice to the next generation of LPAA practitioners.  Find out if Audrey is truly “as common as dirt.”    Interview Transcript:    Jerry Hoepner: Welcome to the Aphasia Access Conversations Podcast I'm Jerry Hoepner, a faculty member in the department of communication sciences and disorders at the University of Wisconsin - Eau Claire. Today I'm joined by Dr. Audrey Holland, the 2022 recipient of the Robin Tavistock Award. Although I feel as though no introduction is necessary, nor would that completely reflect the lifetime of work by Audrey, it is my distinguished privilege to introduce today's podcast guest. For over 60 years and she started when she was roughly 5, Audrey has been a leader in moving aphasia care towards holistic participation-based interventions that ultimately improve the quality of life for people with aphasia and their families. From her work on functional communication to aphasia bank to co-founding Aphasia Access, she has made remarkable impacts on so many of us. Her work on coaching and counseling has influenced the speaker. Her work on coaching and counseling has influenced the field of speech language pathology even more broadly without further ado, it is my distinct privilege to introduce Dr. Audrey Holland.    Jerry Hoepner:  Well, again so good to see you today Audrey. It's always nice to connect with you and have a conversation.   Audrey Holland: Yeah, I just wish there were more opportunities, and I think this has been a very sparsely here for the kind of things that really make a difference for a lot of us, which is that last meeting seems so long ago and the last one for me was the one I had in Baltimore and whoa.   Jerry Hoepner: Yeah it seems like-   Audrey Holland: Centuries.   Jerry Hoepner: Yeah it seems like a long time since we've all gotten to be face to face, since all of this pandemic stuff has gone around yeah that's for sure. Really looking forward to getting back to seeing people, and you know, giving hugs and all of those things again yeah for sure yeah definitely.   Audrey Holland: I mean that's as much the meeting as the meeting.   Jerry Hoepner: Yeah absolutely. I agree, there's, you know, there's good things about connecting virtually but it doesn't quite feel the same as when you're in this. Yeah for sure. So hopefully by the time the next of Aphasia Access Summit comes around we'll be able to meet in person and I know we have a lot of new friends and old friends that we'll be able to reconnect with at that time, too, oh.   Audrey Holland: Yeah that's going to be pretty fast. I think that's going to be faster than right now. I can visualize.   Jerry Hoepner: I hope so yeah, I hope that's the case that we can, yeah like you said, get back into rubbing shoulders with each other again. Yeah it was like we're getting can see the end of the tunnel. I hope- I should knock on wood when I say that. But it seems like getting there. Yeah well Audrey it's my pleasure to have a conversation with you today about your recent award the Robin Tavistock Award. Would you be willing to talk a little bit about what that means to you?   Audrey Holland: Oh yes, I'm very, very, very, very honored by that. I believe I'm not sure of them, I meant to open up this morning and I didn't. I believe it's been in existence for more than 15 years, but this is only the second time that it's gone to an American. I think those things are correct.   Jerry Hoepner: I believe you're right, I think in 2018, Simmons Mackey was the first American and then we've had another North American in 2020 and it was Aura Kagan. And, of course, a really long list of respected names in the in the field of aphasiology. Linda Worrall, Chris Cote, and Marion Brady and so many more that that come to mind that have just been such a great influence on the field in.   Audrey Holland: Are there Australians?   Jerry Hoepner: I believe, Linda Worrall. I'm not sure if there were besides Linda.   Audrey Holland: I think. But even so that's really wonderful that its international.   Jerry Hoepner: Agreed.   Audrey Holland: Don't mind that it's English speaking I think that's kind of appropriate but that.   Jerry Hoepner: Yeah, it's a pretty remarkable group of people that have been awarded this so we're really happy to see that honor being bestowed on you and certainly more than well-deserved given your work. With that in mind, maybe we can take just a little bit of a conversational journey through your kind of list of achievements, or some of your most kind of enjoyed achievements from the past and maybe talk just a little bit about some of the work that you've done in the past and how you see that as contributing to the to the field of aphasiology today.   Audrey Holland: Well order, the thing that I sort of I'm not embarrassed about this in the slides, but it really does work kind of funny looking back on it and that's the fact that so much of my early work was so rigid and so in the box and I didn't realize it really except as I stopped doing so much of it and started doing work that was much more satisfying to me and creative to me, and hopefully other people as well. But it's been kind of checkered career, when I look back on because you know I started out in child language.   Jerry Hoepner: I didn't know that.   Audrey Holland: Oh yes, oh yes. Not only that I started out in behavioral sciences really the rigorous behavioral sciences. I was married to a man who co-authored the analysis and behavior with B.F. Skinner and so that influence on my life was big and I remember distinctly waking up one morning and Jim and I were living in Boston you know and we were living in Boston and he was working and it was sort of like, “Okay, I have to- I got to tell her who he really married here. Jim there is something I have to tell you.” “Okay.” I said, “I got a behaviorist.” And he said, “yeah.” And I thought I my marriage was saved.   Jerry Hoepner: He already knew.   Audrey Holland: He just went back to sleep.   Jerry Hoepner: So, what moved you from, as you said, being kind of in that box, the more rigid behavioral approach to something that was more functional?   Audrey Holland: I can't resist the Skinner box thing like.   Jerry Hoepner: Exactly- the Skinner box.   Audrey Holland: I was raised in the Skinner box. Not all the time, but. What moved me from that? I didn't see people being satisfied by reaching- I can't think of how the design definitely that would help people realize how their life can be better.   Jerry Hoepner: Right.   Audrey Holland: That just drove me insane and I thought you know there's two things you can do: You can either stop doing what you're doing then say, “I'm through, I quit, I'll do something else, I'll sell hot dogs on the corner,” whatever but what made sort of more sense to me was how can I move from what I am doing into the kinds of things that I think are worthwhile doing and that's actually when I started writing grants that had to do with getting along in life which quickly took limelight off behavioral analysis. All the things that didn't help people talk any better we're- not in talking in better just in general but getting along anywhere that's it speaking world, speaking linguistic world but just speaking.   Jerry Hoepner: So that really launched you it sounds like into the work that you did in the late 70s and 80s on functional communication and yeah I would say that work has been so influential on many of us, and really started to move the field in a direction away from the traditional drill and practice and to something more meaningful for supporting individuals with aphasia so fascinating to think about how that transition began. How did that relate to your working with individuals with aphasia and the way that they responded to this new way of doing things?   Audrey Holland: Well my sense was I wasn't doing anybody very much good. I mean you didn't do a whole lot of practice sentence structure really didn't seem to go anywhere and people always seem to be thrilled when I got through with that part of my therapy and started talking. Finally, got through to me that I felt better and that really, really made the difference and that was still in Boston, a very long time ago.   Jerry Hoepner: I know we've talked about this before a little bit, and I know, there was a whole room full of people that initially had conversations about the start of Aphasia Access or what would become Aphasia access but would you be willing to kind of give us a peek into that in those initial conversations and how that all got started and became what it is today?   Audrey Holland: Well, and I think that was the Boston meeting essentially that really got kicked off at the Boston meeting where everybody there, if not totally, at least partially had a mindset that fit with, “Okay, let's move this cart a little forward,” and it sort of shows, actually you were there, weren't you?   Jerry Hoepner: Yeah.   Audrey Holland: Yeah it did it didn't start at the beginning, but it sort of was a ground swell. So that by the last date is like kumbaya we're all sort of thinking, “Oh wow look at all this room full of people feel as I do.”    Jerry Hoepner: Was really remarkable to have all of those people together to with the same mindset and with a lot of shared values, to have those conversations and just to continue the work that was really burgeoning at that point in our field on life participation and.   Audrey Holland: It was it was like so kumbaya meeting is just such a warm, warm thing that nobody was like, “Well, I better get out of here. This is not my cup of tea,” you know nobody's robbing people thought that.   Jerry Hoepner: I don't know, I think it was a pretty close-knit group of people so.   Audrey Holland: But how did that happen?   Jerry Hoepner: That's a good question. I think some good people brought the right minds together in the right place at the right time.   Audrey Holland: I knew who to see just to come.   Jerry Hoepner: Pretty remarkable what it's grown into since that time and the connections around the world and yeah absolutely. Well I'm going to shift gears a little bit, because I know, one of the things that people value so much about you and you hear this at ASHA and you hear it at Aphasia Access conferences and other conferences as well I'm sure, but that you've been a mentor either formally or informally to so many and people really value the advice you give and the human connection that you make with everyone. So maybe you can give us a little bit of insights into your you know your thoughts on mentoring and your thoughts on kind of helping to move the next generation forward.   Audrey Holland: Well, the first words that come into my mind with that question are hey we're all in this together, and I sort of see the group as people who share this sort of like, “Oh my gosh, I'm home. I found a comfortable place to be,” and I think people come by that, some earlier, some later. Some of my best friends never have gotten to that point. And they at least have the kindness to me not to tell me I'm wrong, and I don't tell them they're wrong. But it's pretty clear that more people are into this headset then I think we have any idea. I don't know if that's a decent answer. I'm not I'm no longer uncomfortable, so I really believe in helping each other is more important than if they say correctly right.   Jerry Hoepner: And it's remarkable that you're you know you're so approachable and so willing to approach anyone and get on their level. Your statement, you know “We're all in this together” is a really good reflection of that that you're willing to have a conversation with anyone and I feel like, as you said, it's that way at Aphasia Access meetings in general, no one is you know kind of out of reach, so to speak for a conversation.   Audrey Holland: I'm going to share one of my favorite stories with you Jerry. At Arizona, and I basically ran the spouse groups so that I add some and we were walking out of the spouse group one day, and there was a woman walking behind in front of me, actually, and she had with her someone that she brought to the group, and this is a spouse, and she said to the spouse she said, “What did you think?” And the woman said. She was really interesting. She was just like the rest of us.” And the other woman who I didn't said, “I told you she was as common as dirt.” I was right, I was walking right behind him I cracked up, I mean I just loved it. That's probably my favorite color compliment I've ever gotten. Audrey Holland: Common as dirt.   Jerry Hoepner: Common as dirt. That's high praise when it comes, you know, meaning that you're able to connect in and didn't seem standoffish or out of reach. That's fantastic, totally fits your ability to connect with a whole range of people so that's a fantastic story I love it.   Audrey Holland: It was, “Yes!” for me but I couldn't exactly you know do that in public. But it was I really felt it that's why I don't mind telling story.   Jerry Hoepner: Common as dirt, or you know that could be a title for the podcast we'll see. No that's fantastic, I wonder, so you mentioned that you are doing the spouse groups and it brings me to another question that I was thinking about because, along with all of your brilliant work in the realm of aphasia, you've done some amazing work in the realm of coaching and counseling that has impacted even a broader audience in our discipline. How did you make that leap towards coaching and counseling?   Audrey Holland: Remember, I went to a school that specialized in counseling and the whole picture, etc, etc, etc. So that that actually came with my master's degree, I think that was it stuttering. But the orientation to working with whole people not just their language has always been part of my- has always part of my graduate training from my master's straight on so I don't know if that answers the question but.   Jerry Hoepner: Yeah absolutely definitely does so. I have one more big question and then maybe we can just wrap up our conversation, but I know that I have to ask this for all of my colleagues and future colleagues and students as well, so if you have any advice for future generations of speech language pathologists and life participation approach practitioners, what would that advice be to someone who is just moving forward or will be in the future years?   Audrey Holland: Whoo. I think part of the answer to that is be gutsy.   Jerry Hoepner: I like it.   Audrey Holland: People are not going to accept all this, but you know if you're gutsy enough you're going to be different enough and you're gonna be viewed as somebody that might have something to say and I don't think it's a bad thing to be who you are clinically I think you have to be who you are clinically and who you are as a teacher, not just you are as a body, you know so.   Jerry Hoepner: So, be gutsy, be assertive, be creative, take chances, is that what I'm hearing?   Audrey Holland: Uh huh. And take your lumps.   Jerry Hoepner: Lumps yeah that's a good point because not every- if you're always trying new things and pushing the boundaries I'm sure you'll find some times when things don't go exactly like you hoped, they would.   Audrey Holland: No that's never happened to me.   Jerry Hoepner: No, me neither you know for sure.   Audrey Holland: We're just perfect.   Jerry Hoepner: Yeah exactly. It's nice to be that way.   Audrey Holland: When you come at somebody with a different opinion and you say, “No, the moon is not made a green cheese”, you're going to take some lumps and I think one thing good to be able to do is to shut your ears shut your ears, get away from it and continue to be yourself.   Jerry Hoepner: That's terrific advice. Yeah, I appreciate that idea of trying new things pushing the boundaries. That's how we move forward, rather than trying to stay in our comfort zone and do the same things you've been doing.   Audrey Holland: You're not gonna die. We aren't. You might take a few lumps, but so.   Jerry Hoepner: I feel like that sort of brings us full circle, when you talked about being in the box and not feeling very comfortable in the box and then kind of rounding things out with you know stepping out of that box, you know being gutsy, having the courage to do that and to move things forward so.   Audrey Holland: It isn't that you're feeling that I am much happier when I am who I am rather than when I say, “That was a dumb thing, that isn't me, I didn't mean to do that.” Yeah.   Jerry Hoepner: Yeah, I think that's great advice and I can see why that would carry over to you know the individuals with aphasia and their and their family members that you work with too. It's hard for them you know to be themselves and to push the boundaries if we're not being ourselves and we're staying in the box so fantastic.   Audrey Holland: It's like I just realized this morning that I have a couple of friends who are, well more than a couple of friends who have spouses and people who are aphasic, and so I talked to two or three of them this morning, just like, “Hi, how you doing, what's going on?” Just not anybody but Audrey.   Jerry Hoepner: On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.

During this episode, Janet Patterson, Research Speech-Language Pathologist at the VA Northern California Healthcare System, speaks with Dr. Linda Worrall. Linda is Emeritus Professor at the University of Queensland, a fellow of Speech Pathology Australia, and founder of the Australian Aphasia Association. They will be discussing IARC; a bit of history, the influence it has had on aphasia research and practice, and what to look forward to in 2022.   In today's episode you will:   Learn some history and exciting information about the 2022 International Aphasia Rehabilitation Conference  Find out the value of international collaboration to people with aphasia and to the aphasia research and clinical community Hear about tiny habits, change, and a challenge to ask ourselves, “If I had aphasia, I would want…”.     Janet Patterson: Welcome to this edition of Aphasia Access podcast, 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 esteemed colleague and friend, Dr. Linda Worrall. Dr. Worrall is an individual who, to most of us associated with Aphasia Access, needs little introduction. She is Emeritus Professor in the School of Health and Rehabilitation Sciences at the University of Queensland in Australia. She is a fellow of Speech Pathology Australia, and founder of the Australian Aphasia Association. This is only a small part of the tireless work she does to serve people with aphasia, their family members and care partners, and the clinicians who interact with them on their aphasia journey.   Today, my conversation with Linda focuses on her experiences with the International Aphasia Rehabilitation Conference, or IARC. As Linda 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 ten gap areas, or go to the Aphasia Access website.    Today's episode with Dr. Worrall crosses all the gap areas as we talk about the upcoming International Aphasia Rehabilitation Conference. Aphasia Access is honored to host the 2022 International Aphasia Rehabilitation Conference, which will be held in June in Philadelphia, Pennsylvania. This event is based on a tradition of excellence and brings together 200 to 300 delegates, researchers and clinical specialists in speech- language pathology, linguistics, neuropsychology and rehabilitation medicine, all of whom are dedicated to aphasia rehabilitation.    Before moving on to our interview today, I want to take a moment to acknowledge our colleagues Tammy Howe, Eavan Sinden and Brent Paige, who chaired IARC 2020 in Vancouver. They collaborated to create a wonderful conference that unfortunately had to be cancelled in the middle of the pandemic. We appreciate their efforts and are glad we have been able to return to an in-person conference in 2022. I'm excited for the conference this year and in this discussion with Dr. Worrall, hope to spread that excitement to those of you who are listening.   I am honored to have Dr. Worrall as my guest today. We will be talking about IARC, a bit of history, the influence it has had on aphasia research and practice, and what to look forward to in 2022. Welcome, Linda. And thank you for joining me today.   Lina Worrall: Ah, thank you, Janet. I'm absolutely delighted to be talking about IARC.   Janet: Let's start our conversation today, Linda, with a bit of history about IARC. I know it's been around for quite a while, but I'm not sure exactly how long. How did the idea for IARC come into being, and when or where was the first meeting? Tell us about the sense of spirit and collegiality at those early meetings?   Linda: Sure. I joined the IARC conference in its second year, but I'm led to believe by Ilias Papathanasiou, who has recorded the history of this conference, that there were three people who said that we needed an international conference that focused on aphasia rehabilitation. And those three people were Maria Pachalska from Poland, Renata Whurr from London, and your very own Nancy Helm-Estabrooks. And so the first of these conferences happened in 1984, in Krakow, in Poland. I joined the next conference in Gothenburg in 1986, as a PhD student, and since then it's sort of gone mostly through Europe, but also to other parts of the world. So, Florence, Edinburgh, Zurich, Aalborg. And then I missed a few of those because I was in my childbearing years. But then I rejoined it in 1996, when it came to the US in Boston, and Carl Coelho and Robert Wertz convened the conference. Then it went to the very exciting one of Johannesburg in South Africa, Claire Penn organized that one; then Rotterdam, and then I hosted one in Brisbane in 2002. Then we went to a Greek island of Milos. We've also been then back to Sheffield, Slovenia, Montreal, came back to Australia and Melbourne, The Hague, London, Portugal and then the cancelled Vancouver one. But now it's back to the US and to Philly in June 2022. So that's very exciting.    So, these conferences, because they originated in Europe, the first few conferences, the sort of the spirit of the conferences was very much cross cultural, cross linguistic, because Europe has so many languages and so many cultures there. In the early meetings, there was a lot of that sort of sharing of information and how things were done in the different countries. But it's always been a very friendly and supportive conference. And you know, I just love the IARC.   Janet: From your perspective, Linda, what has been the guiding philosophy for IARC over the years of its existence?   Linda: Well, it's a very interesting conference, in that there is no organization that auspices the conference. It's an organic one. It is driven by the community, the aphasia community. So, I think the theme of the upcoming conference in June in Philadelphia is “the engaged community”. And that's what we've become. The conference, I think, has been pushed around the world, if you like, by this engaged community of aphasia researchers and clinicians. I think that's one of the key features of this particular conference, is that it has a very strong focus on clinical practice. It's research, but it's often research by clinicians, for clinicians. So, the guiding philosophy has been that each place that takes on the conference, molds it according to their context, so there's no financial sort of carryover, from one conference to the other. It's an entirely independent sort of conference, but it continues to grow. So, it's very interesting from that perspective.   Janet: That's really exciting to hear, because engagement is so very important. No matter what you're doing, whether you're working with a patient, whether you're engaging in research, and to see this community of researchers and clinicians engaging together to think about aphasia, I think is terrific.    Linda, IARC, as its name implies, is an international gathering with previous meetings in Portugal, Greece, although I wish I would have been at that Greek island, that must have been a fun conference, Australia, Britain and the United States. So, will you reminisce about the past meetings you attended? I'm thinking in particular about the synergy and the collaboration that evolved during the meetings, and after the meetings   Linda: Sure. The sort of collaboration that has occurred has become a very international, interwoven network. And so, what we seem to be doing is progressing the field as a whole, because we're collaborating together, we're always sharing sort of projects, we're hopefully not reinventing the wheel. So, the conference is also a sort of a place where there's a lot of meetups. For example, the Collaboration of Aphasia Trialists will often have a meeting at the IARC. Aphasia United often has a summit, what we call a summit. For example, the last one we had was in Portugal. We discussed the issue of aphasia, which is one of the major recommendations of the White Paper. That led to a paper by researchers and clinicians at that summit, that set up a bit of a research agenda and brought the attention of, hopefully, the research community, to the fact that we're not making progress on aphasia awareness; that the numbers have stayed the same pretty much for a long time. So, then that attracted the interest of a Ph.D. student, Claire Bennington, and she is an experienced clinician, and also Deputy Chairperson of the Australian Aphasia Association. Her whole Ph.D. is all about aphasia awareness. So that I think is a good illustration of how the sort of collaborations across the world then can progress some work forward.    I like the single-track format of this conference in that everyone is in the same room together. So that means that everyone gets a greater understanding of other's work. The posters, there's a lot of time and attention given to posters as well. You get an opportunity to talk directly to the people at length; it's always the place where there's the new ideas are coming through. And so that's always exciting to see what new ideas, what new therapy ideas, are being brought through into developing some evidence, maybe, for those ideas. In Australia, we often have to travel long distances to the conference, we've been scheduling afterwards a writing retreat of international researchers. And so, for a week, we just talk aphasia, and that has also been very productive because it brings the researchers closer together as well. That's something that, I think, has emerged from this particular conference.   Janet: You've said some really exciting things and ideas, simple things from the notion of progressing the field together as a whole, and working together and collaborating, sharing, because don't we all get better when we share and work with each other rather than trying to be in our little silos. You also talked about the single-track format, allowing everybody to hear the same thing, the same message, the same paper, but yet they have individual perspectives. So afterwards, we can all talk about that paper and there can be different perspectives on it, that will lead to collaboration and synergy.    Linda: Yes, yes.    Janet: That's an exciting thing that's happening.    Linda: Yeah.    Janet: Well, as interest is mounting for IARC 2022 in Philadelphia, and as we emerge from the pandemic, I believe it will be heartening to us to see each other in person again. The program is stellar. It's well rounded, and it offers content for everyone. Linda, you are one of the keynote speakers for IARC 2022, and I wonder if you might give us a little bit of a teaser or trailer about your talk and any other interesting presentations on the program. Just enough to further pique our interest in attending IARC in June.   Linda: Yes, of course. I'm very honored to be asked to be a keynote. My topic this time is about mental health and integrating mental health into aphasia rehabilitation. And so, I framed it within something I talked previously about, the seven habits of highly effective aphasia therapists. This presentation will delve much deeper into one of those habits, which is about mental health. I do try to put a lot of thought and reading and preparation into my keynotes so that clinicians can go away with some things that they can implement on Monday morning when they return to work. So that's sort of my aim. My rationale is, I think, is that every therapist will encounter someone with low mood, depression, or anxiety, if they are in the field of aphasia rehabilitation. I'm hoping to present some compelling evidence about why therapists need to integrate psychological care into their aphasia rehabilitation. I want therapists to walk away knowing how to do it. And I'm going to continue the habits theme, by using the concept of tiny habits. So that's the teaser, I'm going to try to distill all of this evidence and complexity into three tiny habits that integrate psychological care into a failure rehabilitation. So that's my challenge.   Janet: Ooh, and a big challenge it is.   Linda: Yes. Maybe some people have already sort of listened to or heard the tiny habits book, but it just resonates with me when therapists are so time poor, that integrating a tiny habit that is prompted by some other sort of therapy, or behavior in the clinic room seems to make a lot of sense to me. I know that as a clinician, that you are going from one patient to the next, and you just need some little trigger, or a prompt sometimes, and a set of words, maybe, to remember to do something, to do a good behavior. So that's the tiny habits framework.    I'm also very keen to hear some of the other presenters. Marian Brady is going to be talking about the RELEASE study. If you haven't come across the RELEASE set of papers yet, it's a step up from Cochrane in terms of the trustworthiness of this evidence. They have used a secondary analysis on over 1,000 individual participant data points, so over 1000 people with aphasia. They're asking some of the really important questions in our field, like the effectiveness, not only on language outcomes, but functional outcomes; they're asking questions about prediction; and they're asking questions and providing answers to things like timing, intensity, frequency and dose of therapy as well. That is going to be a great presentation.   And Miranda, one of the great thinkers, I think in aphasiology, Miranda Rose is continuing the theme of dose intensity in the chronic phase. She is heading up the Aphasia CRE [Centre for Research Excellence in Aphasia Rehabilitation and Recovery] in Melbourne, Australia. There are some fantastic Ph.D. students in that center, I think there's something like 37 or something Ph.D. students. So, there's a lot of work going on. Jytte Isaksen is talking about training medical staff, and honestly, I have no idea how she's done that. I find medical staff one of the biggest challenges, trying to teach them about conversation partners and how they need to modify their language. Suzanne Beeke is also talking. She's talking about her amazing website, Better Conversations, and she's from London. It's all about the dyad, you know, treatment that addresses, both people in the interaction. From that perspective, it's a really great sort of site for therapists, and there's an online learning program. I know that they have recently trialed that with primary progressive aphasia, too. Yes. So, they're some of the sort of the invited presentations that I'm particularly looking forward to. There's a lot of papers that I'm also just looking forward to in terms of presentations, things like Madeline Cruice's and Lucy Dipper's, LUNA program. It's about sort of discourse intervention, which is just going to be great. And then Aura Kagan is going to be talking about conversation partner training in the acute setting. I mean, I have always found that a really challenging sort of setting. And then of course, there's Nina's updated White Paper, Nina and Jamie Azios, and I'm really keen to hear the updated version of that White Paper as well. That's not even going along the posters, because the posters haven't been released yet. So there's, you know, lots of presentations, I think that people will just find really interesting.   Janet: It sounds like, and I tell you, you have piqued my interest far beyond what it was five minutes ago. So, I'm very excited to hear these papers. I read the RELEASE papers and I agree with your assessment, that they really are taking a look at important questions, clinical questions, that we need to be asking ourselves, how we can be more effective and more efficient in the work that we do. But I'm especially interested in hearing your talk, Linda, because I think the psychological aspect of what we do is very important. We talk to clinicians, saying, well, we should be counseling, or we should be talking to patients, and clinicians will say, “Well, no, wait a minute, I'm not a mental health professional, I can't do that.” And I would say, well, that's right, you cannot do the things that mental health professionals can do or should do. But you can have a listening ear, you can counsel people on better communication strategies. So, it's very definitely a part of our work, just having a conversation with the person with aphasia and their family member, having that conversation and being a person who shows care and concern for the person and the family, as well as for the aphasia and the change in the behavior.    We've done some work on motivation lately and depression with some research partners. One of the things that we did was review a lot of papers that reported on aphasia treatment. Many, many of them talked about motivation, but what they said is something like, well, the patient did not do well because they were not motivated, or the patient was discharged because they were not motivated. Fine. But there was no explanation of what made them not be motivated, or how did they figure out the patient was not motivated. And quite frankly, I think that motivating is part of what we need to be thinking about as clinicians because if a patient is not motivated, we need to figure it out - if it is just not the time for therapy yet? It might not be. Or is there something that we can do differently or better to engage the patient and the family member in this enterprise of aphasia therapy? I think the whole issue of mental health and emotional health, is just a critical part. It will help us be better, more efficient, more effective clinicians, I think.   Linda: Yes, I agree. I'll be talking about the stepped psychological care model. I think that provides some clarity around our role in mental health. It talks about preventing psychological health problems, and then it talks about interventions that we can do that are not, you know, like behavioral activation, doing things that are enjoyable, etc. We are part of the team for that. When people need, you know, psychological intervention, we still have a role in that psychologists need to be able to communicate with the person with aphasia. So, you know, that stepped psychological care model is, I think, very useful for understanding what our role is as the mood problems get more severe. But we've got a lot of roles even in the prevention stage, too.   Janet: Yes, we do.   Linda: My keynote will then sort of be preface to Brooke Ryan's reporting on the results of our large, cluster randomized controlled trial of an intervention aimed at preventing depression. She will be reporting on the results of that, too. That's the ASK trial.   Janet: Well, that will be exciting. I keep thinking back to this issue of the engagement that you talked about earlier, not only the community of aphasia clinical researchers, but also the engagement of the patient, the family and people in treatment. That is what makes aphasia therapy successful. We can have the best impairment-based or activity-based treatment, but if we're not engaged as a group, whatever the group means, then that reduces the likelihood for the optimal outcome, I think.   Linda: Yes, I agree totally.   Janet: So, I'm so excited about IARC. I want to tell our listeners that registration for IARC is easy. Just go to www.aphasiaaccess.org/IARC2022/. You can register there; you can also see the list of speakers and events. You can also just search on IARC aphasia and get the link as well.    Linda, you have talked about so many terrific aspects of IARC and now I would like to ask you for your personal opinion on a question, why attend IARC? By that what I mean is, what makes IARC different from other aphasia conferences? There are many aphasia-related conferences each year, we've been to many of them over the years, when our paths have crossed, and each of those has great programming. We also know though, that people have limitations, such as financial limitations, job related requirements, family responsibilities, or travel concerns. And we all have to carefully select what meetings we attend, because we can't attend all of them. So, what makes IARC stand out in your mind as a premier conference on aphasia?   Linda: I think it's in the name. International, it is truly international, and it has rehabilitation in the name. The focus is very much on rehabilitation, not so much about the nature of aphasia, it's about rehabilitation. The focus has been on translating the research to clinical practice and involving clinicians in that decision-making about what research needs to be done is very much part of that. Also, it's becoming more and more apparent that we need to involve our clients in deciding what research needs to be done too.  The Philadelphia conference is a hybrid conference, so you can attend in person or online. I think that overcomes some of the travel barriers. I think it will be a very well-presented conference from an online perspective, because I know that they're investing a lot of money into the platforms. It won't be just a Zoom-type thing; it is a bespoke platform that they're using.    I've been to most of the other aphasia conferences around the world and what I like about, and why I go to, this particular conference, is I think it's the diversity of the cultures. For example, we've got one of the presentations from Ghana this year. There's a developing speech-pathology field in Ghana, and that's just wonderful that's going to happen. From a research perspective I think all of the papers really have had a focus on optimizing outcomes for the person with aphasia and their family, so it tends to be a highly relevant, person-centered, clinician-centric conference. I think if you're a researcher, you will come away from this conference with so many fundable projects and international collaborators for that particular project. If you're a therapist, you will come away from the conference with plenty of ideas on how to improve your service, with the backing of evidence, and it may even be…fun. Not only the conference may be fun, but also that the therapy and the rehab that has the evidence can actually help clinicians, I think, remain engaged with their clients, too. So, yeah, I think whether you're a therapist or researcher, you will get a lot from this particular conference.   Janet: And you will have a lot of fun while you're doing it.    Linda: Yeah.    Janet: And that's important.    Linda, you are a role model. You truly are, for all of us whose lives are touched by aphasia, or who work to improve the lives of people with aphasia and their family members. So, as we bring this interview to a close, are there any pearls of wisdom or lessons learned, that you'd like to share with our audience?   Linda: Well, I think I've probably learned a lot of lessons from my career.   Janet: Haven't we all? Haven't we all?    Linda: Yes, absolutely. One trend that I am noticing at the moment is that as our profession ages, maybe, that there are more speech pathologists, and even professors of Speech Pathology, who either develop aphasia, or have family members who have aphasia, and that inside perspective, allows them to tell us what we're doing well, and what we're not doing so well. I've had some opportunities to talk to some of those speech pathologists and get their perspective on aphasia rehabilitation. Certainly, the three things that they keep coming back to is therapist listening, so that they can individualize their therapy to the person's day to day life and their goals; that the therapy needs to be functional, that it needs to be geared towards what the person wants to achieve; and the final thing that they keep saying is that family members need to be involved as well. That not only includes just the spouse, but in younger stroke patients particularly, Brooke Ryan's doing some work in this area, of working with children, of people who've had a stroke and who have aphasia who sometimes have been quite traumatized by finding their mother or father having a stroke. Or from the other side, the parenting with aphasia - having to parent young children when you have aphasia. Families do want to be involved.    So, I always try to think, and to bring it back to that personal thing of, “If I had aphasia, I would want…” If everyone could just reflect on what they would want if they had aphasia, then I think we would be moving more towards a person-centered approach. For example, I think any clinician who gets me as an aphasic client is going to struggle with my husband. Well, in terms of communication partner training, you know, he's just not going to be able to do it, I don't think. I really do not want to tell you the Cinderella story, nor do I want to be describing the Western Aphasia Battery picture description. I sometimes feel as if I'd like to do an advanced health directive – do you do those sort of things where you write down what you want to happen more towards the end of your life?   Janet: We do. And that's a great idea, do not give me the Western Aphasia Battery picture, do not tell me Cinderella.   Linda: That's right. Absolutely. You know, really thinking about, okay, well, if I had aphasia, what services would I want? For therapists to reflect on that and to build their services around that, as well as listening to what their clients want.   Janet: You mentioned the three things that patients with aphasia have said that they'd like the clinicians to do; listen, make the treatment functional, and involve the family. Those are so very, very important. I want to make sure I say that the sentence that you said, or the really the call to action, or the challenge that you're giving all of us, is to ask, “If I had aphasia, I would want…” That's a profound question. Because I suspect most of us go through our lives, thinking that it won't happen to us. But it might. And if it did, what would I want?    Linda: Yeah, yeah. The number of speech pathologists who have a parent with aphasia, sometimes this is the reason why they've come into the profession, and why they've come into this interest area. And so, you know, it will happen to our family members, or even to us. So, it helps us to think, rather than thinking of the client as being some other person, it's about making it more person-centered.   Janet: I think about years ago, I don't even recall the situation, but in a graduate class, I was talking about this issue, in not quite as enlightened a way as you are doing now, but I remember telling the students, if I ever have aphasia and you are my clinician, please don't ever make me name pictures. And that's exactly what you're saying here for us to be cognizant of what the treatment envelope is like, not just the specific treatment technique, but the desires, the reality of what the level of recovery could be, and the family members' desires and needs.   Linda: Yes, absolutely. Yeah, our patients, our clients have a lot to tell us, we really do need to listen to what they're saying.   Janet: I hope we do. I hope that we all learn to listen much better as the days and weeks and years go on in front of us.    This is Janet Patterson, and I'm speaking to you from the VA in Northern California, and along with Aphasia Access, I would like to thank my guest, Linda Worrall, for sharing her knowledge and experiences about IARC with us. I'm especially thankful to Linda, for talking about person-centered aphasia, for having this discussion about things that we can do to make the therapy session more engaging and more relevant for our patients and for their family members. I'm hopeful that each of you will join Linda and many others at IARC 2022. Remember that you can register at www.aphasiaaccess.org.   You can find references and links in the Show Notes from today's podcast interview with Linda Worrall at Aphasia Access under the Resource tab on the homepage. On behalf of Aphasia Access, we thank you for listening to this episode of the Aphasia Access Conversations Podcast Project. For more information on Aphasia Access, and to access our growing library of materials, and to register for IARC 2022 Please go to www.aphasiaaccess.org. If you have an idea for a future podcast topic, please email us at info@aphasiaaccess.org, and thank you again for your ongoing support of Aphasia Access.

During this episode, Jerry Hoepner, a faculty member in the Department of Communication Sciences and Disorders at the University of Wisconsin – Eau Claire, speaks with Dr. Tyson Harmon, 2021 recipient of the Tavistock Trust for Aphasia Distinguished Scholar award, about his work that addresses factors outside of language that influence communication success.   In today's episode you will: Learn about the importance of contextual factors and how the environment can place cognitive demands on people with aphasia.  Learn about some potential cognitive factors that can prevent people with aphasia from participating fully in everyday communication.  Learn about how communication partner responsiveness and emotional arousal can affect everyday communication participation.  Learn specific strategies to help people with aphasia cope with these environmental, task, partner, and emotional demands.  Learn about strategies for helping people with aphasia to change their mindsets in a way that helps them deal with these everyday challenges.  Interview Transcript:    Jerry Hoepner: Welcome to the Aphasia Access Conversations Podcast I'm Jerry Hoepner, a faculty member in the department of communication sciences and disorders at the University of Wisconsin - Eau Claire. Today I'm joined by Dr. Tyson Harmon 2021 recipient of the Tavistock Trust for Aphasia Distinguished Scholar award. Tyson Harmon is an assistant professor in the department of communication disorders at Brigham Young University and is interested in the assessment treatment and psychosocial aspects related to aphasia and acquired apraxia of speech. His current research is focused on understanding how attention emotion and language interact to affect functioning and recovery and aphasia. I'm privileged today to discuss Tyson's work with him. Broadly, his work addresses factors outside of language that influence communication success contextual factors such as cognition emotion, environment, and social or partner factors. Those topics obviously fit within the model of LPAA, so I'm really excited to have this conversation with you today. Tyson I'm a big fan of your work and its relevance to what we do every single day so.   Tyson Harmon: Thanks so much for having me, Jerry. I really appreciate it, and just thrilled to be able to speak with you. You've always been just a great support to me and my work and I just have really appreciated your mentorship so thank you.   Jerry Hoepner: Thank you, and I can remember the first time we met, I think, maybe the first or second Aphasia Access Leadership Summit.   Tyson Harmon: That's right, it's been a few years.   Jerry Hoepner: Yeah, we were both 10 years old, at that time.   Tyson Harmon: Yeah, it's gone by fast.   Jerry Hoepner: It sure does it's amazing how quickly that goes by. Yeah well, maybe I'll start out with kind of a big question and ask you a little bit about your experience and your mentors in the LPAA model I know you've had some really good ones, but not all of our listeners are aware of who they are.   Tyson Harmon: Sure, yeah, I would be so happy to talk about that. So yeah, I mean I have been blessed to have many mentors and a lot of people who just take an interest in me and my work from early on, and I mean, as I mentioned Jerry, you've been one of those people. But I want to mention a few people specifically and I first need to mention my doctoral advisors Katarina Haley and Adam Jacks, I mean they have just had such a profound influence on who I am as a researcher. The topics that I'm interested in, the way I go about what I do in research, and for those of you who know Katarina and Adam you understand that they're kind of a package deal, they collaborate a lot and I was it was very blessed to be co-advised by them during my doctoral training. One thing about Katarina that I think is important to mention is, as we'll talk about today, I do both qualitative and quantitative work and Katarina was very influential in kind of mentoring me towards learning qualitative methodologies that really allowed me to pursue some of the psychosocial interests that I have and we'll talk a little bit more about so that has just been really, really important. I think, at that time, when I was an early PhD student at trying to figure out what my interests were and what methods I needed to get a handle on, I didn't really have the foresight myself to understand how important qualitative methods might be but Katarina did. And she really guided me in that direction which I'm really grateful for. And you know I guess just the other thing I'll say about Katarina and Adam is they just always were such excellent models for me of trying to really keep the people that we're trying to serve through our research in mind and to recognize them as people not subjects or participants and to try to you know just do things that will really help them and I have just been really grateful for that and remember that as I've tried to kind of start my own independent research trajectory so really, really grateful for them, and their mentorship and guidance. The other person I need to mention is Nina Simmons-Mackie. So I had been a fan of Nina Simmons-Mackie's work from early on, when I was a young master's student. And I was blessed, I think it was in 2014, to be able to have her as my ANCDS fellows mentor and so that was kind of the first time I was really able to interact with her one-on-one. And that was really, really meaningful to me. I even remember specifically some of the conversations we had, but the thing that has been most impactful is that you know, having just really admired her work for such a long time and then meeting her in person ever since that that time in 2014 every time I see her, she just takes such an incredible interest in me and in what I'm doing and I mean she'll read papers, when I send them her way she just gone above and beyond, to really mentor me and help me and, to be honest, I probably wouldn't have even been in the running's for this this award that you mentioned Jerry, if it weren't for her because she reached out to me and said, “Hey Tyson, I think you might be a good candidate for this, you should think about it,” and I, personally, I mean I sometimes, you know, feel a little bit inadequate, I guess, I struggle with feelings of inadequacy sometimes I might be the only one, but you know to me, I was like, ‘no I really like I am a good candidate for this?, this seems like a pretty big deal.' But with her encouragement, you know I put my name in the hat, I guess, I so I'm grateful for her just believing in me too. So yeah, I mean there's so many people I could talk about. I think I do need to mention one more person and that's Jacqueline Laures-Gore. So, you know her work and stress on aphasia has really impacted me and I was able to connect with her right as I was finishing my doctoral studies and she was able to kind of serve as a mentor for me, as I was thinking about where to take some next steps, and you know similar to other people I've mentioned she's just really taken an interest in me and my work and just been so generous about reaching out, so I think you know all of these people, obviously impacted me as because of the research interests their focus on the life participation approach to aphasia which is also kind of who they are, and they're great compassion, they have not only for people with aphasia but for me and so I've really just been grateful for that there's more people I could talk about, but I think those are hits on some of the big ones.   Jerry Hoepner: Yeah, that's a pretty good list, and I, I just want to highlight a couple of things that you said, because I think they're so important, when you discuss this idea of Katarina encouraging you to learn those qualitative methods. I think it speaks, and you talked about this a little bit, it speaks to the idea that you have the right kind of methods to answer the kinds of questions that you want to ask and that's really the way that you've approached it, in the way that we should all approach it, so I think that's just something to really highlight because it's you know not easy or effective to answer every question with the same methodology so.   Tyson Harmon: Yeah absolutely, so important.   Jerry Hoepner: And I really appreciate, and I'm not surprised, but the focus on seeing our research participants, and I even hesitate to say that word as it comes out of my mouth as people and, as someone who needs to benefit from the work that we're doing not just be observed and tested and all of those things, but there should be some tangible benefit or impact on them down the road at least because of our work with them, so I think that's just so, so important to highlight and I hope that others will recognize that importance as well. I know we as a company and in Aphasia Access surrounded by people who value that but I don't know that not everyone does, obviously so yeah.   Tyson Harmon: I mean, and just one other, maybe real brief anecdote I'm in thinking about that aspect, and particularly Katarina has influence on me in that regard, and one of the early qualitative pieces that I published was with Katarina and it was really an effort to try to understand whether treatment approach for apraxia of speech that she was kind of thinking about and developing was acceptable to the people that we were going to be using the treatment on, and so we did a qualitative study that all about kind of social validity to you know get that input from the beginning, as we were planning and designing that that intervention, rather than waiting until it has already been developed to get that feedback and so again just you know it's an example of I guess stakeholder engagement, which I've continued to be very interested in and grateful for the efforts that are going on in the field to get stakeholders more involved, from the beginning, from the onset of research. I think that's really important but, again, that was just modeled for me early on, through those mentors.   Jerry Hoepner: Yeah, and that's it! Stakeholder engaged research is just such an important element of that participant as a human being, who has you know, a stake in in the research that we're doing, and it has been should have some things to say about it so absolutely and what a just a great model and a great way to start out. In terms of your work as an academic, so to speak, or on that path and the other thing that I wanted to mention what goes back to your comments about Nina Simmons-Mackie and how generous and open she was an encouraging she was, and I know that definitely applies tonight because I think we've all seen that at you know Aphasia Access conferences and at ASHA and that any other place you might run into her, but I think that's true of so many individuals that are involved in Aphasia Access. I know that when I did the podcast with students that's something that was really almost shocking to them how easy it was to have a conversation with people that they've only seen their names in print before and feel like it's just you know, like you're talking to a friend or another just another regular human being, and I think it's really important for us to keep that.   Tyson Harmon: Yeah, for sure I tell my students often after I get back from conferences like you guys are in a great field, because the people in this field, or just nice, you know, like they're just so many nice people they're just genuinely you know, nice and easy to talk to and caring. So yeah, it's definitely something that I've noticed in my students have noticed that too.   Jerry Hoepner: Yeah, that emphasis on relationships that we bring to our work and our research our clinical work and our research definitely carries over, you know. We walk the walk, I'm hoping, in terms of this profession, so carries over to those relationships with other professionals as well, which is fantastic.   Tyson Harmon: And I think so.   Jerry Hoepner: Well, since I did bring up the Tavistock Trust for Aphasia Distinguished Scholar award, would you talk a little bit about what it means to you to be awarded this and potentially what its impact will be and has been on your research?   Tyson Harmon: Yeah absolutely I mean, first of all I just want to say how honored I was to receive this word award and frankly a bit shocked as well, I didn't really see it coming or expect it and you know it's meant a lot to me, and I think you know the one of the things that early on just hit me about this award that was the in not just the award but the Tavistock Trust for Aphasia in general is that you know this was founded by a person with aphasia and their family and to me, you know thinking about Robin to have a stock in relationship to this word is really, really meaningful because, again I kind of go back to what I said previously, but this is about people, and it really caused me to reflect like am I honoring the people with aphasia in what I do professionally and in college, as I mentioned cause me quite a bit of reflection, I think it was a confidence booster as well in that you know I it's nice to kind of have your work recognized and think, “Okay, maybe something I'm doing is making a difference” and, to be honest, this kind of came at a time in my kind of academic career I'd hit three years exactly in my professorial position and I was at this kind of point where I was like man is anything that I'm doing making a difference and, and so it was it was just kind of a nice affirmation of like okay like you know this, this does matter, the work that I'm putting in is not only noticed, but it can make a difference for people with aphasia, which is what I really hope and so yeah, I think that confidence and just a greater commitment, as I mentioned on people with aphasia and their families in terms of how it has impacted and will impact my research. I've been really grateful for the opportunity. That I've had with the encouragement of the Tavistock Trust for Aphasia Board to get involved in the collaboration for aphasia try and to make some connections with a physiologists who are working internationally. So, you know I think there's a lot of potential there and I really believe that. You know, to really make a difference we're going to need to do more and more collaborative work both within this country and internationally, so it has just been awesome just so honored to have received the award and really hope to honor the Tavistock trust and you know the Tavistock family in how I continue my research trajectory.   Jerry Hoepner: That's fantastic, and I just want to emphasize how important that is you mentioned CATS (collaboration of aphasia trialists), for us to kind of band together and address topics internationally that I mean, I think, maybe just even a few years back, it would have been a much bigger obstacle to be able to have those collaborations but now it's just kind of a part of what we expect and to be able to you know when you're looking at kind of niches in the field right some carved out little area of aphasia interventions and so forth. It's good to connect with other people that are in a similar or the same niche and can collaboratively accomplish a lot more in terms of that work together so I just think that's a really important outcome for sure.   Tyson Harmon: Yeah, well and I guess just the other comment I'll make about that is I'm always surprised at how like gracious people are when I reached out to them, they know like we're all so busy, and have so much going on but you know I've been able to have a few great conversations with international colleagues and people have just been so gracious and kind of responding and taking time and talking about overlapping interests and that's a really fun part of this, so I just encourage you know, maybe, people who are listening, who are like me and sometimes get a little bit nervous to impose on others like to just you know take that step and get conversation started.   Jerry Hoepner: Absolutely, that's great advice. Well, fabulous to lead into this discussion about your work with kind of the principles that direct how you work, and I think that emphasis on relationships and the human piece that people with aphasia are people that we need to serve and have their best interest in mind, is a great starting point for our conversation about your work, because that's essentially what it's based on and we'll start with asking you a little bit about your work on addressing those contextual factors and maybe that begins with a definition of contextual factors and how that plays into the questions that you ask in your research.   Tyson Harmon: Yeah, sure absolutely. So, you know early on, is a kind of began thinking about my research interests and such. And really you know, think about some of this in relation to the WHO-ICF which you know, has been kind of connected with aphasia and in the WHO-ICF is many of you now than we think of you know if we're applying this to aphasia the body structures and functions being kind of the aphasia itself and how the brain is affected by stroke, or otherwise, and activities and participation, but the bottom of that model is depicted graphically you have what the WHO-ICF refers to is contextual factors which are the personal and environmental factors and the model really suggests that these contextual factors can play a role at any of these levels to activities participation body structures and functions and I would say kind of the overarching goal of a lot of the work that that I do, and that we do in the aphasia lab here at BYU is really geared towards understanding the impact of those personal and environmental factors on communicative functioning and participation for people with aphasia and you know, I think that this is important because, if we're really going to promote participation for people with aphasia, then we need to first understand the challenges that are inherent in their everyday communication environments. Maybe what are some of those barriers what's prohibiting them from participating as much as they would like and you know, I think that that really is the first step to finding solutions right, we need to understand those challenges, first, so we can come up with solutions that will help them overcome some of those barriers so that's you know, an emphasis will have a lot of the work that we're doing and you know, we talk about in in my lab what I've started to refer to as the cognitive challenges for more kind of the environmental conditions that include complex attentional demand, so all of us when we're communicating in real life right, we are communicating in environments in context that are highly demanding and I was having a conversation with a student in my office just earlier today, and we have the door open and there are people talking in the hall right and that's you know, increases the demands that you have during that conversation, and this happens, or you know when we talk at home or in the car, I mean there's a radio on or TV on.   Jerry Hoepner: Agreed, Tyson and that's just that's just real life right?   Tyson Harmon: And so, I think it's important to think about that and think about then hearing kind of cognitive challenges that exist in our everyday communication environments. So, we kind of talked about that aspect, and we also in in my lab talk about what we refer to as social challenges you're more kind of the. Inner, personal aspects of everyday communication that can sometimes pose more demands, so the way that communication partners react to us the emotional reactions that we have when we're engaging in a conversation and so all of this, I think, is really important, too, but again can kind of heighten the demands in ours everyday community communication context, and so it kind of has to do with those contextual factors, some of these things relate to maybe the personal or environmental factors, but we need to really kind of understand you know what is going on in these everyday environments in order to promote that participation, and I think that's it kind of the long term goal of a lot of what we're doing.   Jerry Hoepner: And I think the emphasis on being aware or becoming aware of what those factors are you mentioned the you know talking to a student with people moving around in the hallway and talking and so forth and we're fortunate that often we can communicate without any you know compromise to our message at that point, but certainly with individuals who have aphasia that can play a role in how effectively they communicate and the best place to begin, as you described in providing those supports is understanding what those demands are having a better understanding of that I know that's a big part of all of the recent work that you've published is just becoming more aware of what those demands are so that you can make some sort of an adjustment, or you can train a communication partner to make some adjustment those kinds of things.   Tyson Harmon: Yeah and, in addition to that, I think you know, one of the things that we've been interested in, because I think it makes sense that you know this is going to affect communication and there's such great work on kind of how we support communication for people with aphasia that's so very important but you know we've also been very interested in like how does this actually affect measures of language, right? And are these demands and having a direct impact on spoken language production for people with aphasia and, you know again, kind of thinking about the relationships between kind of their environment and how people with aphasia function in terms of their language abilities.   Jerry Hoepner: Absolutely, so that that's really a good segue into thinking about what are those cognitive challenges that prevent people from participating fully in communication.   Tyson Harmon: Yeah, so you know we kind of just talked about things like people talking in the hall when you're trying to have a conversation, and you know I'd like to talk about a little bit of work that we're doing maybe in relation to kind of background noise. But you know before I go there, maybe a better starting point would be to think about kind of multitasking, which is hard for all of us, right?   Jerry Hoepner: Not sure if any of us really can multitask.   Tyson Harmon: yeah, it's kind of impossible actually, you kind of have to just shift your attention from one thing to another, even though we call it multitasking. But you know some of this work, about cognitive challenges or cognitive demands.   Again, focusing primarily on different types of environmental factors that can tax the attentional system. Actually, was born, as I was working on my dissertation and I became very interested in some of the previous work that had been done about attention and aphasia and some of Laura Murray's work, for example and you know, historically, you know, there was this interest in kind of the late 1990s early 2000s and attention and how that you know related to aphasia and kind of how dual task conditions might affect language, processing and people with aphasia and a lot of that was approached from a theoretical perspective to try to understand kind of the relationship between attention and language and how that is manifest in aphasia and all of that work was so influential in you know what I was thinking about as a doctoral student and I really kind of a approached my questions about attention and cognitive demands from I guess more of a practical perspective which or maybe a clinical perspective is a better way to put it which was more just like well let's figure out like regardless of theoretically the role that attention is playing in language processing per se and how it plays into kind of the big picture of how aphasia is manifest let's just think about how attentional demands are influencing people with aphasia and when they're trying to produce language and also think about you know how they are responding to these attentional demands and so I published an article with some of my colleagues in 2019 That was really kind of building off of some of Murray's work from the 1990s where we used a dual task paradigm to look at the effects of kind of complex attentional demands on narrative retail for people with mild or moderate aphasia and you know, we had for kind of our dual task condition we had these participants retell a story, while performing a tone discrimination tasks they had to discriminate between a high and a low tone, while in the process of retelling the story, we had 10 people with aphasia with moderate aphasia, and I should say 11 people with mild aphasia and impulse control participants and I think our findings were interesting and on one hand, they kind of confirmed what had been shown in the past, which was these attentional demands, you know, really take a toll on language production for people with aphasia more than their peers, who don't have aphasia but the other interesting thing that that we found, which was a little bit of a new insight, I think was that you know the control group so we back up a little bit so as I mentioned before everyone is affected by increased attentional demands right and that's not necessarily surprising and what our control group did is they slowed down significantly when retelling stories in order to maintain their accuracy and so they kind of allow themselves more processing time and then they were able to you know, continue to produce accurate language and the mild aphasia group did something similar, they just slowed down a lot more significantly more than the control group, but they also took a bit of a hit on at least language productivity right they weren't producing as much language during this retail experience so it did kind of affect them differently, even though they were trying to kind of compensate for those demands and the moderate aphasia group and really they took a the biggest hit in their accuracy, where they just and I had a really difficult time even producing accurate language during this story retail task when there were these complex attentional demands. So that's kind of one piece of work that we've done again kind of focused on the multitasking question or what we would call a divided attention condition. And the other one that I mentioned, I could talk about a little bit is a study that we actually just analyzed results from a few months ago, I have a thesis student her name is Brenda Nelson who's worked with me over the past two years, and she just graduated and has really done some great work during her time as graduate student here but she was kind of interested in in taking this idea of attentional demands and investigating and in a similar way how background noise might affect spoken language for people with aphasia so this is something we haven't even submitted for publication yet. We're kind of in the process of converting the thesis into an article, but so I'm not going to go into a lot of depth about the results or anything but I think it's a really interesting question that that Brenda has pursued and she's developed these different background noise conditions where she's tried to kind of simulate some types of everyday communication environments. So, there's a cocktail speech condition there's a lively conversation. There's a one-sided phone conversation. We were thinking, okay if somebody with aphasia was kind of in line at a grocery store and they're trying to have a conversation and there's somebody behind them on the phone what would that be like so it was really fun to kind of develop some of these conditions and think about how they might you know simulate some types of everyday communication contacts and yeah I think there there's some kind of interesting preliminary findings from her thesis work that you all can look out for the hopefully we'll get out soon so.   Jerry Hoepner: Absolutely, and just as a little bit of a preview, more than just changes to language production or lexical production but also changes to speech and while speech for sure, in terms of the fluency of speech and so forth Is that correct.   Tyson Harmon: Yeah so, I mean I think we're, you know, one of the things that we're seeing across these background noise conditions, is it seems like you know speech efficiency or the information units per word that seems to be one of the key measures is really taking a hit for our aphasia participants, but not making you know the background noise isn't affecting that for our control group. And again, this is kind of preliminary work, so I don't think it's confirmatory by any means, but I think it's kind of pointing in this direction that yeah There does seem to be maybe some real changes that are that are happening in in terms of just spoken language, and then I you know there's kind of a qualitative piece of this to where we've interviewed these people after they've participated, we haven't even really started to analyze this part truly we're kind of in the process of just you know, really familiarizing ourselves with the data which is kind of the first step of this analysis process and I have another thesis student working on that that qualitative aspect of the question, but I had a conversation with her, the other day, and again like and I guess take this with a grain of salt, because this was just a conversation after she has spent like hours and hours with these data. So, I think it's meaningful but, again, we haven't done a true analysis, but one of the things that's really standing out to her, is that the facial participants really seem to be talking quite a bit about how much they have to focus on producing language when there's background noise. And the control participants are like oh I didn't I didn't even notice it, they just like totally you know, are able to kind of filter it out, it seems like based on some of these comments, so I found that interesting again we'll get some more kind of concrete data that will be able to report on, hopefully, in the next month or so.   Jerry Hoepner: So that'll be interesting to find out, I mean it's, it reminds me of something that a lot of my clients with mild aphasia say right, even when their production and their fluency is pretty normal they talk about that effort in order to be at that level I am working really, really hard. It's not as though it just rolls off the tongue it's difficult work to be a success, successful from a communication standpoint as they are, so I think that's a really important point to highlight as well.   Tyson Harmon: Yeah, well in it, I guess, one other comment about that is um you know from some of the qualitative data we collected in conjunction with the multitasking project. You know that was another thing that kind of stood out to us as people were talking about how like they close their eyes or did you know different behaviors to essentially limit the amount of you know stimulation that they were receiving from the environment seemed in an effort to be able to really kind of put all of their resources into the language task right.   Jerry Hoepner: Right yeah, that makes sense. Do you have a sense of how those kinds of cognitive challenges and demands affect their participation in everyday communication?   Tyson Harmon: Yeah, that's such a great question we, and we have some work that we're actually doing right now, I think, is giving us, you know some preliminary kind of findings in that direction and so I guess you know to start out one of the things that I'll say in response to that question is, we do have a qualitative study that was published in 2020 where people kind of connect some of these intentionally demanding people with aphasia connect some of these potentially demanding kind of experimental conditions to what they experienced in their real life, and they are kind of making this connection they seems like and it's potentially demanding to do things like eat dinner with friends or talk, while driving they've had experiences I remember one of our participants talking about trying to go back to work, and it being so hard for her to have her boss talk to her, while she was trying to do something on the computer so just attending to those things at the same time. People have talked about kind of trying to control the TV while listening to their spouse obviously group settings tend to be a challenge, but in relation to your question, more directly. I think one thing that we're interested in is you know, is this actually affecting participation and you know in both have kind of the studies that I mentioned more from the qualitative standpoint, it does seem that people are kind of talking about this, how they're discouraged from participating when these demands are high. I remember one participant in particular, said that the some of the difficulties associated with these attention and demanding environments caused him to, and this is a direct quote from him, he said quote he became quote discouraged from saying anything. So, yeah, I mean again this is nothing confirmatory, but it makes sense right that, like when demands are so high, then you know people with aphasia going to have a harder time engaging in these communication opportunities yeah.   Jerry Hoepner: Absolutely, and it kind of reminds me of some of the work by Dalemens  that said, you know you can have a hard time initiating those interactions even when you're surrounded by people I mean yeah being in a context with people communicating doesn't necessarily mean that you're participating in that context, and if the demands are really hard, especially in a group context you may be there, but not really engaging fully in that interaction so.   Tyson Harmon: Yeah, absolutely. In reference to Dalemans' work, which is just awesome, by the way, I really admire that work um you know just that that idea that you know engagement and participation isn't just about the amount of communication and experiences or opportunities right actually it's what people with aphasia really want is they want to engage in meaningful ways and maybe if they have a you know a smaller quantity of communication experiences, but those are meaningful and then that's really what matters, and I think that is connected to what we're talking about here because you know we're cognizant of kind of these demands, and the effect that they can have on meaningful engagement from people with aphasia. Then you know we're going to be better enabled to kind of think about you know how to prepare our clients for engaging in meaningful ways and supporting people with aphasia so that they can have that meaningful engagement yeah.   Jerry Hoepner: Absolutely, I think that goes back to Dalemans' comment about people with aphasia would prefer smaller quantities of high-quality meaningful engagement, rather than big quantities of not so meaningful interaction so yeah that's a really great connection to your work for sure. Well, maybe we can move towards a discussion about social challenges and what the factors are that contribute to those social challenges for communication after vision.   Tyson Harmon: Yeah, sure I'd be happy to talk about that so. You know, first as a disclaimer you know there's all sorts of things we could think about in terms of cognitive and social challenges and we're really just kind of scratching the surface, on some of this with some of the work that I've done in the last few years and you know I'm really interested in how aphasia affects relationships in general but you know what I'd really like to kind of focus on during this interviews just some of the work that we've done in relation to kind of communication partner responsiveness and kind of emotional reactions, which is something that I've become increasingly interested in as well so should we start with maybe the communication partner responsiveness piece. I think that's a really great place to start I just think that when I read that work it's just such a fascinating and important concept right, the amount of.   Jerry Hoepner: Investment that the individual with aphasia perceives on the part of their partner and in terms of their interactions dictates how successful, they are the amount of stress that they carry about this, so I don't want to take all of your words out of your mouth so go ahead and delve into that just a little bit.   Tyson Harmon: Yeah absolutely um yeah so it just is, as you were saying you know we published, and this is part of my dissertation work they did with Katarina and Adam and published this study in 2020 and the essence was that we were interested in how responsiveness from a communication partner influenced spoken language directly for people with aphasia again, we had to kind of moderate to mild aphasia group and you know this was kind of a fun and interesting experiment to develop. We kind of thought about some of the principles and concepts and behaviors that are often involved in communication partner, training, but we wanted to develop something that you know, would allow people with aphasia to have an experience communicating with somebody who is you know, providing more kind of supportive mostly nonverbal feedback, so they weren't necessarily. You know, providing supports to help them get their message out, but they were just showing you know by how responsive, they were you know this kind of interest and engagement when the person with aphasia was talking, and so we had our participants with aphasia.   Jerry Hoepner: And can I interrupt for just a second because I wanted to highlight something that you talked about in the article about kind of useful or effective back channeling versus less effective, or almost intrusive back channeling. That just is so important in terms of thinking about those partners and how they kind of induce struggle or challenge, or how they support that success sorry to interrupt you sorry.   Tyson Harmon: Yeah no, absolutely yes. We kind of talked about this in the article is kind of these backchannel responses right where you know the participant or in this case, the case of this study, our participants with aphasia we're talking in in in the case of the supportive communication partners in the article we refer to these as responsive communication partners they're providing these backchannel responses. They show interest so they're nodding their head they're giving affirmations like they have an open body posture kind of leaning forward, you know all of these things that we would expect to show kind of interest and engagement and so that was kind of one of the conditions so who participants with aphasia were retelling the story with that partner, and in this case, we had students who were trained and we kind of had a protocol developed and made sure that we had fidelity that everybody kind of got a similar experience and then the non-supportive or unresponsive condition was where the communication partner was you know kind of showing these nonverbal behaviors they suggested disinterest they had a closed body posture they had poor eye contact and kind of this neutral facial expression every 20 seconds, or so it kind of just like looked away or glanced at their phone that was on the table and so we were able to kind of go through this and bring people through this experimental protocol, and then you know measure the outcomes of this in terms of spoken language production. Frankly, you know there wasn't a huge effect on the actual measures of language in this unresponsive communication partner condition. People in general did kind of slow down and we're a bit more can disfluent when talking to the unresponsive communication partner it wasn't much different between people with aphasia in the control group. Actually, the control group seemed to do that a bit more than the aphasia group not significantly, but just kind of on average.   But what was really interesting about this study and what I feel like one of the really key findings was at least for me was that when we analyzed the qualitative reports so we interviewed our participants after they went through this experimental protocol, and then we analyzed their comments about the experience, people with aphasia were talking about strong negative emotional reactions in response to that unresponsive communication partner and our control group they hardly talked about emotional reactions at all, and when they did, then they were kind of neutral, or sometimes even like more positive emotional reactions and, in that, combined with the fact that you know, in general, when kind of having this experience talking to an unresponsive communication partner people were self-reporting, you know kind of increased stress. I think that's important, and I think that you know the other thing that kind of adds to that that body of work is an additional kind of qualitative study that we did where you know people with aphasia were in at this point talking more about just their everyday communication situations and talked about how often they communicate with people who seem to be in a rush or who just give up on them or show signs of disrespect or disinterest and I mean this surreal thing that you know people, people with aphasia are experiencing and maybe it's not taking a huge hole in the moment on their language production but you know, I think that it has the potential to lead to these important kind of psychosocial impacts that may discourage participation down the road. And I mean, frankly in our qualitative work, one of the things that was surprising to us was how many participants described feeling kind of unsupported when communicating with familiar communication partners like family and friends which is why we thought about it more we were like okay I kind of makes sense because you know we're so close to those people we really get like the raw experience with them but you know, so I guess the point there is that, like if this is something that is a reality for people with aphasia and even when people aren't like blatantly poor communication partners, aren't blatantly rude like the notice when people are in a rush or when they you know aren't are not fully engaged or disinterested or ready for the conversation to be over. And it does have an effect, maybe even you know, maybe not on how they're producing language but on how they're feeling and the emotions that they're experiencing during that communicative exchange.     Jerry Hoepner: Yeah I think that's a really important thing to keep in mind, and both of those 2020 papers and we'll have all of these articles referenced at the end, so people can look them up and follow this important work but in both of those cases, you have listeners, who are unresponsive or less responsive in a hurry and that has that impact on their emotional kind of response you mentioned it may affect participation, but I almost wonder if it would affect their, you know, even though it didn't affect their language in that moment and wonder what the downstream effects are of you know, being with a partner who consistently is not responsive, in that way and you talked a little bit in one of those articles about what the person with aphasia might do to be able to kind of ameliorate or contend with that lack of responsiveness, you want to talk about that, just a little bit.   Tyson Harmon: Yeah and you know I think probably the, the best way to address, that is to talk a little bit about some of our findings from the kind of fully qualitative article, you know, one of the things that has been really intriguing for me to think about from the qualitative results of that study is strategies that some of our participants with aphasia were talking about that they use to kind of cope with the negative emotional responses and also some kind of the negative thoughts that are sometimes associated with the communication difficulties. So yeah, so why don't I maybe try to paint a little bit of a picture here for and what some of those findings were. So, you know, in that, in that study, one of the things that again just to kind of return to this, we were focused really on like everyday communication experiences so What are they doing in their actual life as they go out and communicate and kind of one of the themes was all about strategies that people with aphasia were using and you know it I think not necessarily so surprisingly most of them were talking about what I would consider behavioral strategies, so these were ways that they change their behaviors to kind of be more successful and in their communication experiences but what was more intriguing to me was the subset of participants who talked about what I would refer to as cognitive strategies things that they did to kind of change the way they were thinking or feeling in order to cope with these everyday communication challenges that they experienced and one of the things I think is interesting about what we learned from these participants is, I think it could you know potentially kind of serve as a launch point for some of the solutions that we might think about in terms of how to address some of this we're pretty good at the behavioral piece like we talked to people with aphasia about disclosing their aphasia and about you know advocating for themselves during conversation I think in these are things that you know they seem to be doing and they're obviously very important but maybe we don't think as much about how to address or how to help people with aphasia use strategies to cope with some of the negative thoughts and feelings, and so I think it's something that maybe we should think about a little bit more, and, obviously, for me, learning from people with aphasia what's already working for them is a great place to start. So, what we what we learned from these participants and, as I mentioned, it was just a subset of participants, I think it was about if I'm remembering correctly eight out of 21 participants that mentioned these strategies was that we kind of categorize these into three different areas of kind of things that they were doing. The first one was that some of these participants were talking about ways that they kind of changed their mindset to start thinking about challenges as opportunities for growth, and let me, maybe just read a couple quotes from our actual participants. One of them said listening is better than talking, most people doesn't listen, I mean I think I'm a better listener, and so this participant really thought that, because of aphasia become better at listening which is a bit of a kind of cognitive restructuring that probably happened right where instead of thinking about aphasia as a threat. She started to think about it as just a challenge that she could kind of face and use to grow, which I think is really interesting and there was another participant, who said aphasia is a good thing, not a bad thing so just again kind of looking at this and maybe a positive light, which really gets to you know some strategies that are used in in counseling psychology related to cognitive behavioral therapy, which is kind of that cognitive restructuring and kind of changing your thoughts I think you know, there are other ways to approach this from other kind of counseling psychology perspectives like acceptance and commitment therapy as well where you know they talk about cognitive diffusion and this idea of kind of separating yourself from your thoughts so, and you know you have kind of these negative thoughts that you recognize that those don't define you and they're not always true and just kind of letting them exist without having to combat them. So I think this is interesting and I actually want to acknowledge, like some of the great work that is happening right now throughout the world, related to kind of addressing some of these issues and I mean we could, I think, talk about several different groups are doing really interesting things kind of looking at how to integrate some of these counseling approaches with the work that we do in speech pathology with aphasia population. You know the other thing, so, in addition to change their mindset thinking of challenges is growth opportunities, some of our participants talked about empathy I really love this quote, so one of our participants said, ‘some people are nice and some people aren't.' I try to remember that you don't know what other people are going through, because everybody's living a tough life and you don't know so obviously this person with more mild aphasia, but yeah I just I think this kind of got me thinking about okay like are there ways that we can you know train our clients to empathize and take the perspective of others and that's a I think an interesting thing to think about and then the third kind of category of these more cognitive strategies was positive attitudes. And again, and I think there's some great work and thought being put into how to integrate some you know positive psychology into the work that we do. I think positive self-talk seems to have a place in kind of helping people with aphasia address some of these negative thoughts and feelings that they might experience and so you know I think there's just some interesting kind of strategies that already seem to be working for a subset of our participants with aphasia but one thing that I didn't highlight, which I think I should is that almost all of these participants who talked about these cognitive strategies had been living with aphasia for a really long time, so I think it was like you know over 70% of the participants that that mentioned these. And so, you know that makes me wonder, are some of the you know the people who are living with aphasia having to kind of live with this for a long time before they start really getting a handle on some of the you know, some effective ways to deal with those negative thoughts and feelings and is there a way that we as speech pathologist in our role as communication counselors, right? Addressing thoughts feelings attitudes beliefs, as they relate to the communication disorder is there a way that we can maybe step in and integrate some of that earlier on which would be helpful to more people. So again, those are just some questions that I have related to some of this, but I think you know some of the solutions in my thinking, right now, some of the solutions that are really going to make the most impact in this space are those that are addressing both communication and, and so I guess the language side of aphasia as well as the psychosocial impact of aphasia as kind of a package deal.   Jerry Hoepner: Yeah, I really think that ties things up really nicely in terms of this discussion, I love the term ‘communication counselors' or however you frame that. Sounds very much like something Katarina would say.   Tyson Harmon: Maybe I got that from her, actually.   Jerry Hoepner: Not sure, I'm going to tell her you came up with it first so it was really good. I, and I also want to emphasize the statement that you made about, you know, they've got these strategies but they've been living with aphasia for a long time, and how long did it take them to develop these strategies and is there a way that we can kind of shorten that trajectory and get them there a little bit more quickly, you know as I read that article I was thinking of the situations that we all have when we're having a conversation with someone who, maybe isn't paying attention to or we may be reading something into what they're thinking in the moment like, ooh the way they looked at me. Don't they like me? Or what a dumb idea that I just shared or whatever those internal thoughts are and having strategies specifically to deal with that have been kind of vetted at this point, a little bit by individuals with aphasia eight individuals with aphasia, but I think it's an interesting way to think about moving them closer to that by those strategies of changing their mindset of having empathy for their communication partners and being able to take their perspectives because they might be challenged at that moment as well, and then the positive self-talk and focusing on those positive attitudes as a way to kind of break that internal loop of, “I wonder what they're thinking about me or it doesn't seem like they're interested or it doesn't seem like they want to take the time.” So, I think those three things are a really good direction for us to take in terms of hopefully shortening that trajectory of people not having to figure this out over the course of eight to 10 years but, like you said, us as communication counselors being able to move them there a little bit more quickly if we know some strategies that work.   Tyson Harmon: Yeah, and I mean I, I agree, and I just I think, you know, this obviously is not like, you know, the solution, but I think it's a starting point. I think that's one of the things I love about qualitative work is that, you know, sometimes an appropriate starting point can be what's already working for a subset of people with aphasia and we can kind of in a way, almost follow their lead into kind of discovering ways to help more people and so I've really enjoyed kind of thinking about some of the work that I do in in that regard because, and I just think that we have so much to learn from the people that we serve, and hopefully we can help them learn from each other as well.   Jerry Hoepner: Absolutely, and what a great way to come full circle, as we started talking about stakeholder engaged research and for us to take their lead and to follow what they're already doing to be successful, so a fantastic way to kind of wrap things up. Boy, we could talk all afternoon, but this has been a terrific conversation, and thank you Tyson for joining us in this conversation and sharing these meaningful things and I thank you so much for having me.   Tyson Harmon: Absolutely.   Jerry Hoepner: On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.   Resources:   Harmon, T. G. (2020). Everyday communication challenges in aphasia: Descriptions of experiences and coping strategies. Aphasiology, 34(10), 1270-1290.   Harmon, T. G., Jacks, A., Haley, K. L., & Bailliard, A. (2020). How responsiveness from a communication partner affects story retell in aphasia: Quantitative and qualitative findings. American journal of speech-language pathology, 29(1), 142-156.   Harmon, T. G., Jacks, A., Haley, K. L., & Bailliard, A. (2019). Dual-task effects on story retell for participants with moderate, mild, or no aphasia: Quantitative and qualitative findings. Journal of Speech, Language, and Hearing Research, 62(6), 1890-1905.   Harmon, T.G., Nielsen, C., Loveridge, C., & Williams, C. (under revision). Effects of positive and negative emotion on picture naming for people with mild to moderate aphasia.    Scadden, B.D. (2020). The Impact of Background Noise on the Spoken Language of People with Mild to Moderate Aphasia: A Preliminary Investigation. Master's Thesis at Brigham Young University. T. Harmon thesis chair/mentor. 

During this episode, Dr. Janet Patterson, Research Speech-Language Pathologist at the VA Northern California Healthcare System, speaks with Dr. Brielle Stark about the Distinguished Aphasia Scholar USA Award from the Tavistock Trust, technology, and aphasia rehabilitation, measuring discourse, and FOQUSAphasia. In today's episode you will hear about: Applications of technology to aphasia treatment, including provision of virtual care, Ideas for measuring discourse in a clinical environment, and FOQUSAphasia     Dr. 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 Health Care System in Martinez, California. Today I am pleased to be talking with Dr. Brielle Stark, who is an assistant professor in the Department of Speech Language and Hearing Sciences at Indiana University in Bloomington, Indiana. Dr. Stark was a Gates Cambridge Trust scholar during her doctoral work, which focused on the effectiveness and feasibility of iPad-delivered speech-language therapy in adults with post-stroke aphasia. Using MRI, she also evaluated the neural correlates of inner speech in this population. During her postdoctoral fellowship, she researched brain and genetic biomarkers related to acquired language difficulties and language improvements following transcranial direct current stimulation in post-stroke aphasia. Presently, she's interested in modeling and predicting language reorganization recovery in acquired adult language disorders and in older adults, using structural and functional brain markers acquired from MRI. Brie is a co-founder of FOQUSAphasia, which brings together experts to improve the research on spoken discourse, specific to aphasia. Finally, she's interested in the relationship between manual gesture and language and communication and brain injury. In 2021, Brie was named a Distinguished Aphasia Scholar USA by the Tavistock Trust UK. The trust aims to help improve the quality of life for those with aphasia, their families and care partners. Congratulations on this honor Brie, and welcome to Aphasia Access Podcast.   Dr. Brielle Stark:  Pleasure to be here and finally to meet you in person. I say that with quotes since we're on a video, but close enough.    Janet: Agreed. I feel the same Brie. You were named to Tavistock Trust Distinguished Scholar in 2021. Congratulations again, as you have joined a talented and dedicated group of individuals. How has the Tavistock Award influenced your work in aphasia, both your clinical and research efforts?   Brie: Yeah, first, I was super humbled to join this group I admire all of the prior and current Tavistock Trust Award winners and also work with quite a few of them. It's a privilege to be a part of this group. But, you know, for me, something I've always thought about is, we can do science for science's sake, but for me, it's a lot more meaningful when we can make the science create meaningful outcomes for people with aphasia, include people with aphasia in designing the studies, and giving feedback on the studies. That's something I've tried to do throughout my career and hopefully am getting better and better at the more I do it. For me, that's the main point, is that we're doing science that's meaningful. That's our lab motto as well.   Janet: Isn't that so important now, because we read a lot of publications about treatments or ideas or assessments, but then they become very difficult to implement in the clinic. That's the whole world of implementation science, in fact we were talking about that just a little bit earlier, the challenge of implementing a treatment that we read about.   Brie: It's so difficult, and I have so much respect for people who work in the field of implementation science. I've dipped my toes into it and then promptly run away on a few occasions. At some point, I'll be brave enough to go back there. As a researcher without a clinical license, I often rely on clinicians to really feed back to me, is this worthwhile? Can we do this? Is this feasible? That's a really important part of my research and what my lab does, trying to make sure we're doing things that are useful.   Janet: Good for you because that is so very important. One of your research interests is technology, as it can be used with individuals with aphasia. As I mentioned earlier, this encompasses a broad range of topics such as iPads speech-language pathology, transcranial direct current stimulation, virtual treatment, and in particular, I want to highlight mentoring women in technology. Across all of these, is there a theme or an idea, or how do you see technology, such as you're using, influencing our clinical and research work with persons with aphasia?   Brie: Yeah, I love technology. Absolutely. I'm a member of a group here at Indiana University called the Center for Women and Technology. I've learned a lot through that group. For me, technology is a fantastic means of communication. Throughout my years, working with older adults as well as people with aphasia, you know, technology can really overcome a lot of barriers that are there for individuals. My prime example is that kind of feeling of aloneness, when you're recovering from a stroke when you're living with aphasia, and technology has a huge impact and kind of remediating that in many ways. So that's what got me interested in doing the iPad therapy many, many years ago. And it's kind of kept me interested, because I think we're moving toward a world where we want to create as many opportunities to communicate as possible. I think technology is one way to do that -not the only way, but definitely one way to do that.   Janet: You investigated telehealth and delivering therapy through telehealth didn't you, if I recall correctly,   Brie: We did a diagnostic mostly through a virtual platform. But the goal is actually, and we just recently got funding to do more of a telehealth model, we just recently finished a design where we were testing its feasibility. We brought people back for two different time points about a week apart. We wanted to make sure that people were comfortable with the task, we had everything lined up in terms of delivering things well, and also reliably amongst our testers. Now that we have that in place, and we just recently pushed out a paper on our actual methods, we're really excited to use it for an actual telehealth purpose.   Janet: Telehealth is so important, I think, and you know, at the VA, we've done quite a bit of that, in both assessment and treatment. I know that there can be significant challenges if the person doesn't have enough bandwidth, if they can't turn on their computer even. I applaud you for jumping into this arena to try to figure out the reliability and how valuable technology can be.   Brie: It is a tough one, I think our biggest hurdle to overcome has actually been the encryption on some of these HIPAA compliant conferencing apps where you just have to jump through about 12 different hoops to make sure you're logged in, you're not a robot, you're not someone who's going to, as they say, hack the conversation. We've had a few issues with that. But the other issue is obviously technology doesn't overcome all of the issues with reaching certain populations. I live in Indiana, I live in a relatively rural part of Indiana and still high-speed internet is not everywhere around here. We're not reaching everyone, but it's definitely one means of reaching more people.   Janet: I think so too, you know, you hear people saying, well, nobody puts down their phones these days, everybody's nose is buried in technology. I used to think that maybe that was a bad thing, but I'm not so sure now, especially when you mentioned earlier about using technology to address isolation that may occur with people with aphasia.   Brie: Yeah, I agree. I think it's a fine line between technology being an opportunity versus the only opportunity. I think we need to just make sure it's available if that is the preferred method. For many, I mean many in our clinic here, it's not the preferred method, so having the opportunity is quite nice. We recently had one of our participants in our aphasia group here move out of state, but wanted to stay in touch with their friends, so they often use technology to make sure that they can keep in touch with the group back here in Indiana. I think that's a great way to show when it is useful, even though that's not maybe their preferred method.   Janet: Well, good, I hope you keep going along this line of clinical research. Let me turn to another topic that's of interest to you - language organization in the brain. You've been looking at both neurotypical individuals and persons with aphasia. What are some of the findings from this area of work? And then, how do you see them as an application in our efforts in aphasia rehabilitation?   Brie: Yeah, that's a great question. I absolutely love neuroscience, it's one of the things I love teaching as well and I have that opportunity here with our masters SLP students, which is my favorite. For me, the first thing I was interested in was just a better understanding of how our brain actually does language. That is such a complicated question. For me, I came into it very much from that theoretical point of view, and a lot of my earlier work still looks at that, and I collaborate with people who are still really looking at that. More recently, I've been focused on to what extent can we learn something about the brain that tells us about some potential for recovery, or in some cases, a potential for decline? It's so important to try and figure out as much as we can, not necessarily to predict anything, but to improve our ability to tailor our treatments and to have candid discussions with people we're working with. I'm a pretty firm believer that we're never going to predict who's going to recover and who's going to decline because I think there are too many personal factors at play. But I think brain information can give us a lot of really useful things. An example being we've done some work with some collaborators on leukoaraiosis, which is white matter disease, mostly in older adults. it's pretty typical and many older adults, but it seems to be pretty prevalent in people who have had strokes as well. The extent to which there is more leukoaraiosis, in addition to, and even in most cases, is a better predictor than lesion volume itself, in stating whether someone will decline in their language abilities or not. It's this idea that there's something going on at the overall brain health level, that's important to understand. It's not just the stroke that's going to affect how someone is able to recover, for example. I think that's helped us think a little bit more globally about why we care about the brain and how we can use it in helping us understand these patterns.   Janet:  Your research is still at the early stages, and not yet with direct application to an individual sitting in front of you, right?   Brie: That's right. That's right. I think we I think we have a long way to go. Honestly, I think it's a design question, as well as a feasibility question. What I mean by that is the variability in people with aphasia is very large, right? We have individuals with different ages, who had strokes at young versus old age, who had different brain health factors. Then also, you have such different presentations of aphasia. It gets difficult, I think, to model brain changes when you have such variability. If you look at all of the work that's out there in neuroscience, it's lots of group studies of typical young adults. There is not very much variability in behavior there compared with what we're working with in terms of people who have language disorders. We have a long way to go, I think in making sure that we're answering the right questions and using the right designs, but I think we're getting closer.   Janet: I agree with that. I'll be looking forward to some of your work. Looking from the behavioral standpoint, as you mentioned, people with aphasia are so variable, not only in their type of aphasia, or their aphasia characteristics, but also in their personal characteristics, their interest in treatment, their ability to get to the clinic, their technology experience. All of these factors, this variability, contributes, I think, to a person's success or lack of success in treatment, and in general, in coping and living with aphasia. Taking all that into consideration when you're looking at brain function and language organization is very important.   Brie: Absolutely. Brain is one piece of the puzzle, right? And it doesn't, it certainly doesn't explain everything. I always chat with my students about the fact that motivation is so hard to quantify, to your point. I don't think that's something we're ever going to figure out as a brain basis, right? Someone's personal motivation to go to therapy, as you stated, or someone's environment, which is something we encounter a lot, like what's their social network like? What's their support system like? We're never going to be able to answer those questions with brain data alone. I think it's important to have that holistic point of view where you do understand the other factors at play. That's also why I like this LPAA model because there's an understanding of all of these factors contributing to the single person. I like that idea of designing studies in that way, as well.   Janet: We've been doing a bit of work investigating motivation, a couple colleagues and myself. We just keep going down this path and finding ourselves almost coming back to where we started, and not so much full circle, but full spiral because we seem to be back at the same point, but we're better, we're a little further advanced in our knowledge, but it's so difficult to understand the concept of motivation. I think that, as you mentioned a few minutes ago, clinicians or anybody really, but when we think about people who are working with people with aphasia, we tend to say, well, that person is motivated, or they're not motivated, but we haven't measured their motivation, we don't know what contributes to it. All of these factors, then are just part of what the brain does is it tries to reorganize itself and think through language and live with aphasia.   Brie: Absolutely, and kudos to you. That sounds like an intimidating research question.   Janet: It is, believe me, it certainly is. Let's turn now to discussing discourse production and analysis and aphasia, which I know has come to the forefront in your work lately. This topic, I think, has a long and storied history, long history. Despite many publications on this topic, clinicians and researchers remain in disagreement, or they lack clarity on the best way forward to use discourse analysis in a meaningful way in aphasia rehabilitation and clinical research. How did you become interested in discourse measurement in aphasia?   Brie: Yeah, that's a great question, and also a great synopsis of the history. I think there is an extremely long history and discourse is so fascinating because it is so interdisciplinary. I mean, discourse is interesting to people in linguistics, psychology, neuroscience, communication sciences and disorders, philosophy, it just goes across a lot of different disciplines. For me, I have always been interested in communication that looks like real life. Even in my Ph.D., I started focusing on it, reading a bit more about it, that continued through my postdoc, when I had an opportunity to do more independent research. Now in my assistant professor position, I decided that even though it scared me a little bit, I was going to tackle this. This scare is still real, but it's definitely fun. The people who are interested in discourse are some of the best people I've ever met. They're up for the challenge. That's why I've continued to really push, what I think is a kind of a difficult ball, up a hill, over these past few years. I'm interested in using discourse as a more natural outcome of therapy, but also a more natural outcome of just how people communicate, how we can actually talk about how people communicate. I'm all for naming outcomes as well, I think there's a place for those, I think there's a place for individual outcomes like that. I think discourse has a long way to go before it can come to the same standard and be used in the same way as a lot of the outcomes we have out there.   Janet: Isn't discourse what we do? When we tell jokes, when we tell stories, when we have conversations, when we connect any kind of speech, when we talk to ourselves. It is what we do. But it's so variable. You're right, there are so many challenges in trying to figure it out. I'm glad you're rolling that ball up the hill, and you have a lot of help to get that ball to the top one of these days.   Brie: I thank goodness for the help. Something I've just chosen to tackle is, and I'm really interested in, is how discourse changes according to the scenario that we're in. I really am interested in that. You know, the tasks that we give people to elicit language, how different is a discourse going to be if they're restricted to looking at a picture versus when they have to bring in some autobiographical memory, when they're talking about themselves, when it's emotional. That's something I'm super interested in, and I've done a lot of research on that. I'd like to now include people with aphasia in building those meaningful tasks. What do individuals with aphasia feel like elicits the language that reminds them the most of themselves? Some of the feedback we get is, “you are making me tell Cinderella again?” That type of feedback makes me feel like we're probably not asking the right question to get the best language sample from this person. That's something we're pursuing, my colleague and I, we're going to start really just asking the questions such as, “What do you feel like most resembles how you communicate on a daily basis”   Janet: There are several different kinds of discourse, we all we all know that. I just think about the life of anyone, the life of a person with aphasia, they want to tell a joke, or they want to tell a story, they want to whisper an endearment to a person who is close to them, they want to order coffee at the coffee shop, all those are such different kinds of discourse. Maybe they're not long, just a few words, but they are discourse. They do carry with them different requirements to be able to be successful in that. So good job for you for going in that direction.   Brie: I think it's really interesting. I think the other side of that is what do we extract from the discourse to actually demonstrate what we're looking for, right? I've chosen over the past few years, just because of my personal interest, to look at more linguistic things, an example is mean length of utterance. I work with colleagues, a Tavistock Trust winner, like Dr. Jessica Richardson, who works more on the functional side, you know, how many main concepts is someone producing? I think we're starting to get a better idea of what to actually pull out of the discourse to match what we think we want to measure. I think we're getting better at that, and that's something that I want to keep pushing for.   Janet: Good. I hope you do. I think that you're doing that through FOQUSAphasia. You're a co-founder of FOQUSAphasia. By the way, for our listeners, the link to FOQUSAphasia will appear on the Show Notes that accompany this podcast. It's FOQUSAphasia.com, right?   Brie: Yep, that's it.   Janet: You can access it that way. Anyway, you are co-founder of FOQUSAphasia, which is a group of researchers and clinicians who value the evidence derived from spoken discourse, and who want to improve the state of research, which will eventually translate into improved evidence-based practice for assessment and treatment of spoken discourse and aphasia. Tell me a bit about FOQUSAphasia, and the work this group is doing to support discourse analysis,   Brie: I would love to, it was co-founded by about four of us, gosh, back in 2019, actually, at a Clinical Aphasiology Conference in beautiful Montana. We decided that we wanted a venue where people could (1) network with others interested in this area, and (2) band together to actually achieve some of the goals that all of us clearly shared. As an example, we have one group that focused on best practices, and right after this meeting, I'm going to submit a paper from this group that's actually looking at standards for reporting on discourse. Similar to the Roma Consensus that Dr. Sarah Wallace worked on and spearheaded, and that you were involved, we went through a similar expert panel. We wanted to figure out how to enhance reproducibility, replicability, and the ability to just make assumptions across papers and discourse, what actually needed to be the bare minimum thing were reporting and had studied. That's what we asked people. We're going to put out a list of what we think is necessary and recommended to help create that foundation for the spoken discourse studies. We actually made it a little bit broader than just post-stroke aphasia, we were thinking more adult language acquired disorders. That's coming soon and it's one example of a band of people working together to try and achieve a goal. Another one has been highlighting early career researchers and clinicians in our lecture series. We've had a lot of people working on their Ph.D.'s, at a postdoc level, or people like me in their early career, come and talk about what they're doing with discourse. That's been really well received, we get lots of people coming to those and they're all archived for free on our YouTube channel as well. That's been great for visibility and getting people connected.   Janet: How can someone join FOQUSAphasia?   Brie: It's totally free. If you go to FOQUSAphasia.com, which is spelled FOQUSAphasia.com - Q stands for Quality - you can join us a member and then that gets you access to our forum, and also our mailing list. We send out upcoming events. and also use the forum to advertise studies to find other collaborators for grants, for projects. It's very much meant to be a clinician and researcher home for people who are interested in discourse from a variety of backgrounds.   Janet:  I've been on the site and I very much like some of the explanations you give about discourse, and how you describe the questions and the concerns that people have as we investigate it. I'm enthusiastic about FOQUSAphasia and hope that some of our listeners will join it and become part of this discussion as we figure out how better to think about discourse measurement. As I mentioned, I think Brie, I believe discourse comprehension and production is important, just in life, but especially it's important as we think about aphasia rehabilitation, because it is the heart of communication and connects us in so many ways. As FOQUSAphasia and other aphasia researchers around the world grapple with this complex topic and think about how best to measure discourse in individuals with aphasia. Are there pearls of wisdom you might offer to our listeners that they can put into practice tomorrow as they assess and treat their clients with aphasia?   Brie:  Well, that's a deep question. I think, yes. For me, the biggest thing is to come at it from a point of view of what is my treatment targeting, and what measure would be the most appropriate outcome? All of us have had linguistic training. We've taken psychology classes, we've taken all sorts of classes to let us think about the fact that if we're trying to measure something related to improved grammar, for instance, we should probably be thinking about a discourse that's going to be a little bit more robust in the type of things we're asking an individual to do and the type of grammar they're trying to produce. A good example is that there are a lot of treatments out there that are really focused on, let's say, word finding, semantic feature analysis, for example. If we're thinking of the best way to approximate word finding and discourse, we probably want to give people a sufficiently difficult example to try and make them probe for new words, right? So compared to giving them a picture that they're just looking at and just naming things, maybe we want to increase that difficulty a little bit and have some different prompts that we can ask them and measure. I know that sounds so simple, and so intuitive, but I don't think it happens a lot. I think people rely on using, for example, the picture description from the Western Aphasia Battery (Kertesz, 2006) as outcome, without thinking about if it is actually going to show improvement for the reasons I just stated? I think that's just having that critical thinking of what am I actually expecting, will help us to approach this. There are also some great perceptual tools that are now coming out. There's something called the Core Lexicon Checklist (e.g., Dalton et al, 2020) that's great to use on the ground. When you're looking for lexical access, that's a great one that's just come out. And I think those perceptual tools are going to keep getting better because we know that people who are on the ground in the clinic don't have a whole lot of time to sit there and analyze and transcribe everything. I think there are a lot of us trying to create tools right now that we can actually implement.   Janet: I think about some of the tools we have for discourse analysis, and they are very good. But as you mentioned, they take an enormous amount of time. These tools take a lot of time, far more time than a busy clinician has to analyze discourse. So what are we left with if we don't have a tool that we can use quickly and easily, and reliably to show the change in our patients as a result of therapy?   Brie: Yeah, I think what we're left with is unfortunately, an inability to reproduce a lot of these findings that are being published. You read a lot of these very well-done studies that are case studies or use several different people, and you just can't reproduce them, because the measures that they used either weren't reliable, to your point, or they didn't provide enough information about those measures in the paper. That's something I often encounter. For me, it's really thinking more from a research point of view of are we doing something that's useful, that can be implemented. I also want to be a little patient and say I think it's going to take a little bit of time for us at the research level to make the shift and make sure it's implementable. We need to keep moving forward, keep pushing it, but I think we're going to have to really give ourselves a little bit of time. I know that's an annoying answer. But I don't want to rush into it either.   Janet: I don't think it's annoying as much as it is realistic. For so long, people have just, as we talked about earlier, measured discourse in whatever way they wanted to or whatever way seemed appropriate at the moment. But now, if the goal is to try to be focused, reliable, valid, and really make a contribution in a meaningful, clinically meaningful way, it will take time to make sure that there's reliability, and that the advice that comes out of those actions is solid for clinicians?   Brie: Absolutely. I really do think, and I am going to say the ball analogy again, I think the ball is rolling. I think it's rolling quickly, because there are some great people working on these things all across the world at the moment. There are tons of groups that are not only improving outcome measures. I also want to point out, there are some groups that are creating treatments that are specific to discourse. The treatment itself is discourse oriented, and that has not been a focus for many, many years. Discourse has always been the outcome, but not necessarily the thing being treated. There is pretty substantial change, I think, coming and I'm really excited about it.   Janet:  You're right, and I'm glad that you mentioned treatments for discourse, because truly discourse has typically been used as pre-post testing, to show that there's been some sort of change, and that's fine. What has to happen and harking back to your interest in the language organization in the brain, what has to happen, so that the discourse itself can improve. Maybe the therapy has to be about the discourse, or some aspect of it, rather than having discourse be the pre-post measurement.   Brie: That's exactly it, and I think you'll find pretty much across the board it is so rare for therapies to, “generalize to discourse”, and I think we're thinking about it wrong. I think we're thinking that because we're training naming, we should see an outcome in word retrieval. But then we're forgetting that we've also chucked in the fact that we're requiring them now to use grammar. We're also requiring them to draw on some memory processes, and maybe some executive function, when we're asking them to do these discourse outcomes. If we train that also during treatment, I think it's going to make a lot more sense that we should be able to measure those things, that outcome   Janet: That's exactly right. Those are all the things we think about in research design. Not just research design leading to a study, but also clinical research design for what you're going to do with your patient, as you plan their treatment for aphasia.   Brie: Absolutely, and so much credit to clinical decision-making. Again, I have the benefit of a lot of time, and I give a lot of credit to people who make these decisions on very, very little time. I think it's going to be incredible to see how we can finally implement things in the research setting and really making them worthwhile for the clinician as well.   Janet: We just talked about clinical decision-making and for me, I think about mindful clinical decisions. People make clinical decisions all the time. I'd like to see them make those decisions based on evidence, not just the evidence in the literature, but also, thinking back to the evidence-based triangle, the characteristics the patient brings to the table for aphasia? Then adding in what you're learning about discourse, how do we find the best ways to measure the changes, to treat individuals with aphasia, and then measure the changes in discourse in persons with aphasia?   Brie: Yeah, absolutely. I like that. I'm going to use that mindful clinical decision-making now.   Janet: Well, good, go right ahead because that's what it's all about. People make decisions all the time. But if they don't do it mindfully, then you don't know why you've made that decision, or what you might expect. And I think mindful clinical decision-making helps us deliver the most effective and efficient treatment that we possibly can, which, of course is important for all of us and our patients with aphasia and their families.    Brie, your scientific and academic career has provided many interesting experiences and relationships for you, including recognition as a Tavistock Distinguished Scholar in the United States. Many of our listeners are research scientists, and many more are aphasia clinical specialists seeing patients on a daily basis. As we bring this podcast interview to a close, what advice or lessons learned, or interesting observations from your work in discourse measurement, and the use of technology with persons with aphasia, might you share with our listeners?   Brie: My biggest pearl of wisdom, I'm just going to make this very personal, is hearing and listening to the people around you. I really learned so much not only from my peers and the people who are my actual mentors, those that I would consider true mentors in the sense that I've worked for them or they're slightly more advanced than I am. I've learned equally as much from my peers as from my students and from the clinicians that I work with and lastly, from the people with aphasia, who are included in the study. We're just recently running this big study on inner language, how people with aphasia speak to themselves, why they do it, and how it creates a sense of self. I would never have approached this idea without having feedback from one specific person with aphasia that I worked with back in England. He said, “I have the world's richest inner experience, but it just I can't get it out”. That's been a seed in my head for about 10 years. So I just highly recommend just listening and being really open to what people want and what's important to them. I think that's going to be a key thing for driving forward meaningful research.   Janet: We'll keep that in mind. I think that's very important. A couple of studies have come out recently, and you mentioned this earlier as well, about asking people with aphasia and their families, what's important in research, what's important in the way we designed this particular study? Listening to them, and then incorporating those comments into your research design.   Brie: That's right. It's so motivational as well. I come from a very scientific training, I've studies neuroscience, psychology, and all of these things that have taught me how to think about design, but it really doesn't teach me what is meaningful, right? What do people want, what do they need, and so that listening is really important.    Janet: The difference between statistically significant and clinically significant or clinically meaningful, which is not always an easy gap to navigate.    Brie: It's not. That difference is sometimes huge, and sometimes not, but I think it's really valuable to know the difference.   Janet: It's true.    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 Brie Stark for sharing her knowledge and experience with us as she and her colleagues investigate discourse and virtual assessment and treatment, and the use of technology in aphasia. You can find references, links, and the show notes from today's podcast interview with Brie at Aphasia Access under the Resource tab on the homepage. On behalf of Aphasia Access, we thank you for listening to this episode of the Aphasia Access conversations podcast project. For more information on Aphasia Access, and to access our growing library of materials, please go to www.aphasia.access.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.     Reference Dalton SGH, Kim H, Richardson JD, Wright HH (2020). A Compendium of Core Lexicon      Checklists. Seminars in Speech and Language, 41(1), 45-60

Ellen Bernstein-Ellis, Program Specialist with the Aphasia Treatment Program at Cal State East Bay speaks with Michelle Gravier, Jennifer Sherwood, and Albert Mendoza to highlight their research exploring the impact of an online exercise program on the fitness, well-being, and cognitive-communication skills of adults with aphasia as part of the Aphasia Treatment Program at CSUEB. This show addresses several gap areas addressed in the Aphasia Access White Paper authored by Nina Simmons Mackie, including:  Lack of holistic approach to community reintegration,  Insufficient attention to life participation across the continuum for care, and  Inadequate communication access GUESTS:   Michelle Gravier is an assistant professor at Cal State East Bay. In addition to teaching coursework in adult communication disorders and supervising in the Rees Speech, Language, and Hearing Clinic and the Aphasia Treatment Program, Michelle directs the Neurocognitive Research on Rehabilitation of Language Lab (NRRL). Among other research goals, the NRRL seeks to develop and refine interdisciplinary group-based interventions for PWA and explore how these interventions affect language, cognition, mood, and engagement/participation in PWA   Dr. Albert Mendoza and Dr. Jennifer Sherwood are faculty in the Kinesiology Department at Cal State East Bay and both work in the Physical Activity and Health Lab, known as PAHL. The research goals of the PAHL include advancing knowledge pertaining to physical activity and sedentary behavior assessment using data collected from wearable sensors, such as the identification of target behaviors that reduce disease risk and improve quality of life in minority, healthy, and clinical populations. Dr. Albert Mendoza is an assistant professor who teaches coursework in exercise physiology and clinical exercise physiology. Dr. Jennifer Sherwood is an associate professor who teaches coursework in exercise nutrition, exercise prescription and exercise in gerentology. Jennifer also works with the Muscle Power in Older Adults Lab and is past president of the Western Society for Kinesiology and Wellness.     Listener Take-aways: In today's episode you will: Learn about some of the associated benefits of physical activity for individuals post stroke Find out about some of the limitations of exercise intervention research in terms of including individuals with aphasia Hear a description of both physical activity and cognitive-communication outcomes measures for the LLAMA study Reflect on how SLPs can offer training and support to Kinesiologists in becoming skilled communication partners. Transcript edited for conciseness: Ellen Bernstein-Ellis/Interviewer I am welcoming you all to this episode. Thank you for being here. Michelle. Albert, Jennifer, thank you.   Albert Mendoza  04:04 Thank you for having us.   Jennifer Sherwood  04:04 Thank you for having us.   Interviewer  04:05 Absolutely. I'm going to just kick off with a question that I'm going to pass to you, Michelle. Would you care to share an aphasia access favorite resource or moment to start us off today?   Michelle Gravier  04:24 I would love to, thank you, Ellen. I appreciate so much what Aphasia Access provides for all of us. But I just would like to highlight the Brag and Steal sessions. So we actually had the opportunity as a group to present at the Brag and Steal a while ago to present this project that we'll be talking about today. And as you'll hear, it's one of our goals to help people start an exercise group in their aphasia program. It was really amazing to be able to share some of the lessons that we've learned along the way. We were able to implement some of the other ideas that people shared in the Brag and Steal in our own Aphasia Treatment Program.   Interviewer  05:07 Absolutely great ideas and great information. And most of all, just a great community culture of sharing with each other and supporting folks who are really interested in Life Participation approaches.  Before we dive in further, I like to share why I find this topic of exercise so meaningful. My first couple summers of college, I worked as an adaptive PE aide at De Anza Community College in Silicon Valley. And it was just a great opportunity to learn about making physical activity more accessible to a wide range of community members with disabilities. Now, one class member was an elderly woman who had had a stroke. When she came in with her husband, we would help her from her wheelchair to the mats for exercise, but she would often sob through her session. This was just long before I understood the concept of lability or aphasia, and we just did not have any training on how to be a skilled conversation partner. And without any idea of how to support her communication, her ability to participate in the class was negatively impacted. I just remember feeling that the loss of the ability to communicate was just deeply devastating.    Well, fortunately, I found the speech pathology major at UC Santa Barbara. Now fast forward from the late 1970s when I was an undergraduate to 2014 when I was sitting in the ASHA session developed by Anne Oehring, Leora Cherney and a Kinesiology colleague from what was then the Rehab Institute of Chicago, now the Shirley Ryan Ability Lab. They presented their collaborative group treatment model that offered discussions about health-related topics followed by a period of active exercise. Their interprofessional aphasia friendly approach to exercise participation made me think back on that adaptive PE experience. And in the last few years, Aura Kagan has provided multiple reminders that we should be considering the impact of exercise on wellness and recovery in our aphasia communities. So, all of that brings us to today's podcast and getting to explore and share this exercise program. Albert, why don't you get us started by explaining why we have a “llama” in the title of this episode and how the project got started?   Albert Mendoza  07:33 I don't mind at all and thank you for asking. So, it found its way in the title by the way, what is the title again? It's “A llama, a resistance band, and Neil Diamond walk into a bar.”   Interviewer  07:43 (Laughter) That's one of our choices.   Albert Mendoza  07:45 Okay, let's roll with that. A llama entered because that is the acronym for our program. The LLAMA stands for Life-Long Activity through Movement for Aphasia--LLAMA. That's why it's in the title. Also, there's a resistance band, which is one of the pieces of equipment that we provided to our participants that we actually integrate into the exercises. And Neil Diamond, one of the favorites. Whenever Jennifer plays Neil Diamond while we're doing the exercises, you just see the participants' faces light up as well as ours. We both dig on Neil Diamond as well. So it works out. That's a story. I'm sticking to it, Ellen.   Interviewer  08:33 Well, that explains why we have a llama. And could you tell us a little bit about how the project and collaboration actually got started? You were there.   Albert Mendoza  08:44 There's a group on campus, CSR, Center for Student Research. And briefly, it's a program that connects undergraduate and graduate students with faculty who do research and gives them an opportunity to be exposed to research and develop stronger connection with faculty and some skills for their next steps. I was at a (CSR) mixer and we all had name tags on and they had asked some of the students who were there to go around and engage in conversation at different tables. I was standing at a table with two other people. A woman came over and I recognized her right away because her hair was bright blue or pink, I think. I said, “Wait I've seen you before” and I told her that I teach a class in the music building which happened to be right across the hall from the aphasia, I always called it the headquarters but I know there's a--  for the ATP program. And I said, “What was it that you do there?” Because when I would finish lecturing, there'd be a group of people who would come in and they moved everything around. They put up music stands and then there were a lot of people with assisted walking devices in the hallway.   Interviewer  09:58 It sounds like you were leading right into our Aphasia Tones rehearsal.   Albert Mendoza  10:01 That's exactly what it was. So she would talk to me about Aphasia Tones. I thought it was awesome. I just stuck around a few times to watch the Aphasia Tones from the door. But before that, after she told me what they did and told me about the Aphasia Treatment Program, I asked her if there was an exercise component and if she thought that people would be interested in something like that, and she said, “No.” And we have another program in our department that was started by Jennifer, who's here with us today. It's called Get Fit, Stay Fit. And the person who was in charge of Get Fit, Stay Fit, at the time, his name's Andrew Denys, a grad student in our department, happened to walk into the room. I said, “I want to connect you with Andrew. He's the person to talk to, and then we can see about collaborating, getting some students that can come over to work with your students.” And so that's really what started it off.    And I'll tell you when I was really sold, Ellen, was when at the end of the semester, there's a concert that Aphasia Tones puts on, and I went to that concert, and it just blew me away. I was standing in the back and watching everybody sing. And there's a song that was actually written by somebody, I forgot the name of the song, but---     Interviewer  11:17 “I'm Here”, yeah, it was a collaborative songwriting effort.   Albert Mendoza  11:22 I thought, this is why all of us here are doing things like this, to see the impact that you could have, or that you can offer a way in which you can positively impact people's lives. I was like, we have to figure this out, I mean, there's some way that we can be instrumental here. So that's what started off the relationship between Jennifer, myself and your whole crew.   Interviewer  11:51 We also can give a shout out to that graduate student whose name is also Jennifer, Jennifer Cleary, who helped to do the coordination and get it off the ground for the program. And yes, you asked if there was interest. We didn't have an exercise component, but I had been asked multiple times by my members, “Could we do something active?”    Albert Mendoza  12:14 I guess my question is what took you so long to get to the Kin department, and we were like, 40 meters from your building? (Laughter)   Interviewer  12:21 Well, 40 meters is a long, long distance for people who have mobility issues. So that was part of the problem. But I am so glad that that this collaboration started. It is awesome. Albert, thank you for sharing the origins because I love that it was a bottoms up kind of start where ATP members were asking for it. We just somehow had to get the stakeholders together to communicate and share, and you guys just embraced it and made it happen.    So now I'm going to back up. Jennifer, maybe I can hand this next question off to you.    We started as a face-to-face exercise class. But this is a podcast about an online program, a research project, but we originally started with eight people in a room. People could come once a week, we only had space for eight people on one day, eight people another day. Today's focus will be on this online project. Jennifer, what does research tell us about physical activity levels post stroke, what does that look like?   Jennifer Sherwood  13:23 Most adults post-stroke lead a sedentary lifestyle, and they spend 81% of their waking time in sedentary behaviors. They experience reduced cardiovascular fitness, mobility, and they have limited muscle control. And they also have an increased risk of falling. For adults with aphasia, some of our work shows that they take fewer steps and are more sedentary compared to the similarly aged stroke survivors without aphasia .   Interviewer  13:55 I've read that increased sedentary behavior, which I'm really feeling during COVID with all of this time online, increases health risk. Increased secondary behavior is not necessarily a good thing at all.    Michelle, you and I had the opportunity to attend the C Star lecture presented by Dr. Jean Neal Strunjas on “Aging Gracefully, with Exercise and Social Engagement” back in February of this year. And we were impressed. She shared her bingo-cize program developed to engage seniors in the skilled nursing setting, to hopefully get them more active and involved. We'll put the C-star link to that lecture in the show notes. She also provided a review of the evidence for the positive impact of exercise in seniors with and without dementia on cognition and quality of life. It was really quite remarkable and motivating to see that data. I wanted to go out for a walk as soon as that webinar was over, because the data was just so impressive.    Jennifer, let me go back to you for a moment. What is the research suggesting about the benefits of exercise for individuals post stroke?   Jennifer Sherwood  15:06 In post stroke adults, regular physical activity is associated with reduced physical disability. It may be associated with reduced falls. It's linked to better attention and processing speed, but evidence is equivocal on the effects on working memory. Evidence also suggests that aerobic exercise training in post-stroke adults is associated with better cardiovascular fitness, cognitive abilities, walking speed, endurance, balance and quality of life. And strength training is associated with better physical function, mobility, psychosocial aspects and quality of life. While flexibility and stretching exercises are associated with increased joint range of motion, reduced muscle spasticity, and increased motor function.   Interviewer  15:55 It's always really an impressive list. We know that exercise is good for us. I appreciate you just kind of laying that out.   Michelle, you and I also got to attend a session at the 2021 Clinical Aphasiology Conference featuring a preview of the scoping review, led by Chaleece Sandberg and her colleagues in the ANCDs writing group, examining the research on the impact of aerobic exercise on cognitive-communication status in individuals with aphasia. This endeavor was motivated, at least in part, by the Harnish et al. 2018 article, which considered aerobic exercise as an adjuvant therapy for aphasia. We're going to put these citations in our show notes but be on the lookout for a future publication of this scoping review. One takeaway was that we need more research on aphasia and exercise. And they also mentioned some common factors in studies that seem to show positive impact. Michelle, do you want to highlight anything?   Michelle Gravier  16:57 Thank you, Ellen. So, I think as you mentioned, the main takeaway is that we do need more research on including people with aphasia. One of the main takeaways that they provided, in addition to mentioning that we do need more research, is that there's not a lot of information in the articles that are out there about stroke and exercise that specify how many people with aphasia were actually included in these studies.   Interviewer  17:23 Yeah, or not included.   Michelle Gravier  17:24 Yeah, of course, or not included.  But the some of the factors that they identified that might be associated more with positive outcomes included higher frequency programs, longer duration programs, greater exercise intensity, and also the inclusion of different kinds of exercise. So that just goes back to what Jennifer was saying, supporting the role of not just aerobic exercise, but also strength training, for example, in imparting these benefits.   Interviewer  17:57 So you actually just alluded to this and I'm going to ask Jennifer about the research in terms of exercise and stroke. How does it typically include or designate if there are individuals with aphasia as participants, what have you found?   Jennifer Sherwood  18:12 So there's a couple of limitations—especially the data with post stroke adults is limited. It's limited because studies don't recruit nonambulatory stroke survivors. And exercise interventions that involve stroke survivors are often limited by what health insurance will pay. And typically, this limits studies to the first three to six months post stroke, leaving chronic stroke survivors and their families to navigate their lives with new and evolving physical challenges.   In addition, it's also difficult to recruit chronic stroke survivors because stroke isolates people, and so they're less likely to engage in exercise and be in places where they might be recruited to participate in an exercise study. Adults with aphasia who are 25 to 40%. of post-stroke adults are typically not included in studies, especially exercise studies. And the reason being that the studies don't recruit adults with communication difficulties. Adults with aphasia have difficulty following directions and have difficulty reporting their experiences. Therefore, if the study requires participants to report language related outcomes, researchers exclude adults with aphasia, and adults with aphasia also have difficulty understanding informed consent documents. And these documents must be thoughtfully prepared to be understandable and enable adults with aphasia to consent. And another barrier, the final barrier, is that research related tools to work with adults with aphasia are limited. There's no toolkit, and there are few standardized study assessments available for researchers interested in the experiences of adults with aphasia.   Interviewer  19:53 Right, you know, in terms of those limitations and barriers that have caused people to exclude individuals with aphasia as participants, I just want to acknowledge some of the work by Pearl and Cruz in their 2017 article, Daleman's 2009 article, and even Luck and Rose's 2007 article. It all talks about the methods and ways to make sure that we can be more inclusive. And the reasons to include these individuals in our research are just so vital and important. I hope the listeners will take a look at those articles in the show note citations, because I think that's a really good place to start.    So you mentioned some of the barriers, Jennifer to participating in exercise post stroke, do you see there are additional barriers for individuals with aphasia, just being in a post stroke exercise class,   Jennifer Sherwood  20:47 In addition to potential physical ability, or the variable amount of physical ability, there's often, and this is for post stroke as well, that that physicians neglect to recommend exercise, despite the potential benefits. Engaging post-stroke adults in exercise is more difficult because there's not knowledgeable people with the skills to adapt the exercise for their physical and communication abilities. And the programs need to be flexible to accommodate and adapt to frequent health related interruptions and changing physical abilities. And so there's a paucity of these programs in the community.   Interviewer  21:30 That was my next question. What do we know about the availability of adapted community-based exercise classes? Are they widely available? It sounds like not so much.   Jennifer Sherwood  21:41 Now, if you think about most community centers—so the hospital rehabilitation is usually limited by it by insurance. There's maybe like 10 visits or something and that's happening in the first six months post stroke. Then people are left to go to their community centers and community centers are busy, people are impatient. People don't have the training to work with adults with physical disabilities and different communication abilities. I can imagine, and research suggests, that people with aphasia are not going to those locations to exercise.     Interviewer  22:23 I am excited to start talking about the current research focus and status of the LLAMA project at Cal State East Bay. I'd like to share this collaboration because it is a coming together of the speech pathology program and the kinesiology program to create this project. Albert, do you want to talk about the purpose and where we're at with this project?   Albert Mendoza  22:49 Sure. Thank you for asking. The purpose of LLAMA is to assess the feasibility retention and compliance to a physical activity intervention delivered online and individualized in real time to post-stroke adults with chronic aphasia. We have a secondary aim to investigate the preliminary effects of the intervention on sedentary behaviors, physical activity, and function.   Interviewer  23:16 All right, so a lot of different goals. How about describing your participants?   Albert Mendoza  23:22 I mean, just describing the aims of this, it just sounds like a lifelong study.   Interviewer  23:28 Yeah, that's right. It's big.   Albert Mendoza  23:32 So our participants, this is great, because we have a wide range of ages, a range of time post-stroke with our average time from post-stroke being about 10 years. There's a range of aphasia severity from mild to severe. Also, different types of a aphasia, we have a range of six different types of aphasia. And paralysis or paresis, just under 80% of our population have upper and lower right paresis, and many of them have assisted walking devices or wheelchairs. And several of them have been with us for three continuous semesters--they've engaged with the program. So that's pretty exciting.    Interviewer  24:25 It's really exciting because our members vote with their feet. They don't like something, then they don't come back. They take a different group, different class, so…   Albert Mendoza  24:32 They don't like something, they let you know. And then they don't come   Interviewer  24:37 True. They are very empowered to tell us what they like and don't like. Absolutely.    Let's talk about outcome measures. Because I think that's always a tricky part of any study. And this is where interprofessional collaboration, I think really shines. So let's describe our main measures as they cross several domains and why don't we start with the physical activity ones   Albert Mendoza  24:59  For physical activity, like what Jennifer was discussing earlier, we're taking the approach of examining both physical activity behaviors as well as sedentary behavior. So sedentary behaviors, in general are defined as behaviors that require energy expenditure just above resting, just barely above resting, in a seated or reclined position. And then physical activities are above resting, those activities that they're engaging in. For physical activities, we're examining steps as an outcome, stepping time, stepping bouts, in times of like, less than a minute, between a minute and five minutes. Standing time--    Interviewer  25:39 Wait, wait tell us again with a stepping bout is, we're speech pathologists!   Albert Mendoza  25:44 Anytime I say bout it means that you're going from one behavior to another behavior. So it's like a transition. So right now, some of us are sitting, some of us are standing--a stepping bout would mean you get up, you go to the kitchen to grab yourself a glass of Chardonnay or Pinot Grigio. And then you walk back, right, that's a stepping bout. So you went from a sitting behavior or sitting posture, to a walking behavior, and then back to a sitting behavior. So that would be a bout within there. And then when it comes to the sedentary behaviors, we're examining sitting time, so how many minutes a day they're sitting, as well as sitting bouts. So again, that would be a sitting behavior, and then it would transition to a different behavior than back to sitting. We're looking at sitting bouts greater than 30 minutes throughout the day.   Interviewer  26:37 I have just greatly, greatly been impressed and amazed by what it's taken to get those physical measures. And we'll talk about that a little bit more because that's involved some wearable devices. And I'm excited for you to explain that to the audience. today.   Albert Mendoza  26:53 We will and you know, I'm sorry, I just wanted to add that these behaviors, sedentary behaviors and physical activity, they're not mutually exclusive. So a person who has an office job or who's a grad student feverishly writing their dissertation but who runs for 45 minutes later in the day, they have both behaviors. That's the reason why we're examining both behaviors. So I'm sorry, go ahead.      Interviewer  27:23 No, thank you. Thank you. I'm going to ask Michelle to describe some of the cognitive-communication and psychosocial measures that have been engaged for this for this study.    Michelle Gravier  27:35 Thank you, Ellen. We are interested in looking at different outcome measures. For our language outcome measure, we are using the Quick Aphasia Battery. And we selected that measure to see if participating in the group had any outcome or any effect on individual language performance. For our cognitive outcome measure, we selected the Test of Nonverbal Intelligence. We selected that measure because we were interested to see if it affected nonverbal intelligence, so controlling for individual's language ability. And we also were interested in looking at self-perceived barriers to physical activity. Jennifer mentioned some of the barriers that people had to participating in exercise and we wanted to see if participating in the group affected or reduced any of those barriers. We used the Barriers to Physical Activity After Stroke, known as the BOMPAS, and it includes 15 questions across four domains, including locomotor problems, fatigue, and mood, motivation, and information and comorbidities. And finally, we wanted to look at quality of life. And so for that, we use the Burden of Stroke Scale. And this scale asks questions in different domains related to how difficult individuals feel that these different activities are, including mobility, self-care, swallowing, communications, social relationships, energy and sleep positive and negative mood. And it also asks questions about the impact of those difficulties on individuals lives.   Interviewer  29:23 Thank you. I know that our students have really enjoyed learning to give those measures and have an opportunity to learn about the online administration of those measures, because they are all online. Right? All of the assessments?   Michelle Gravier  29:38 That's correct. Yeah. So, as you mentioned, even though the group started in person, the research study actually started once we moved online due to COVID. That's why we have interest in really looking to see how we were able to provide an online program.   Interviewer  30:01 Hats off to you because the study was supposed to be in person and you guys just pivoted and made it happen online, which has been impressive.    I think some of the next few questions are going to focus around adaptability and accessibility. I'm going to go back to the physical measures for a moment. Albert, there was a lot of effort that went into adapting some of the instructions for the participants for the wearable, health monitors like the Fitbit, and the activPAL. Could you explain some of the things that were done in order to make these things, clear instructions, clear and doable for our participants?    Albert Mendoza  30:43 This had interprofessional collaboration written all over it. There's absolutely no way we would have been successful at getting these devices to participants and wearing them or anything if we didn't have the relationship that we do, Kinesiology with the SLP group.    So briefly, these devices that they wore, one was a research grade device, it's a thigh worn monitor; the other is a is a consumer grade monitor, it's a Fitbit that you wear on the wrist. And for both of those, actually Sarah Millar who's a former SLP grad student of yours, made these videos of how to wear the devices, how to charge the devices, proper care, and then we made those available to the members themselves.    We also demonstrated ourselves, so myself, Jennifer, Michelle, after we initialized the devices together, we waterproofed the thigh monitor and tegaderm is used, and we draw a little picture on it so we know which way is up. We take these baggies out to the person's houses. We hand deliver and we demonstrate as well, like this is how you want to wear it, you leave the thigh monitor on as long as you can, only take it off at times when it be submerged in water.    The wrist device, we had only requested that they wear the Fitbit during the exercise sessions, so twice weekly, so that we can get a measure of heart rate. But it turns out, most wore the wrist monitor all the time, to bed and everything. The actiPAL, they wore pretty much 1,440 minutes a day, so that's 24 hours a day that they've had the device. So that's quite something, I mean compliance to wearing those devices. We realize that it is a burden. So we're really thankful that all the members just took to it.    And it was because of the way that we were able to communicate with them with the help of the Speech, Language and Hearing Sciences department to help guide us with how to add more pictures, how to slow our speech down, how to be more descriptive. I was just mentioning that Jennifer and I have made this video, recently. We have new Fitbits. The members need to download the app and sync the device. Jennifer, I noticed just the way that she spoke in the video, she was very clear with her hand motions and very purposeful with the movements-- nothing too fast. It's really at a cadence that, to me, it reminds me of our sessions--the way that we interact with the members.    I think the fact that it's us doing it, myself, Michelle and Jennifer, that also resonates with the members. We're not strangers to them. I hope their impression is that we do genuinely care about them. And that we're offering the best possible mechanism of physical activity that they can engage in, in their best interests and as safely as possible. So those are some of the things that we did.   Oh, also, Jennifer started drafting an email that we would send ahead of time. I forgot whose recommendation this was, but I think it came from, I was gonna say the other side, but that's speech language, you know, your whole posse, but there's an email that goes out. Now a student sends an email out to the group the night before. It has nice big font, and (says) we're meeting tomorrow, this is the Zoom link, it's the same zoom link all the time, the same password, but, we send it out. And then also there's some pictures of some of the equipment that we use,   Interviewer  34:16 Like bring your resistance band and there's a picture of a resistance band. I was so impressed.   Albert Mendoza  34:20 Yeah, and the ball. Also, Jennifer puts a link to the song that we're going to do. Those are all, and probably a few more things that I'm missing, are how we were able to get devices out.   Interviewer  34:40 Let's just jump into the class. Jennifer, would you please describe, I don't know if the word typical is right, but typical class. I think it's anything but typical.    And Albert, you've just said you hope that the members know that you are genuinely involved and engaged and supportive. I think that message is loud and clear. If there was a measure of that, it would be off the scale, because you guys are awesome with the members.   Albert Mendoza  35:05 So thanks, we need to capture that measure.    Interviewer  35:07 Okay, we need to work on that. Absolutely. So Jennifer, what does a typical class look like?   Jennifer Sherwood  35:15 So, in a typical class, everyone logs into zoom. Then we greet them as they come in, we check in with them, we get beginning heart rates, if needed. We then open up a video and we share the video. It's an exercise team member and she's doing the movements. And so it's a split screen. There's one side where she's using all of her limbs. And then the other side of the screen is where she's helping her “getting stronger arm”. So there's always two adaptations and they're noted with a blue circle and a yellow star. We start the videos so that people can clearly see what she's doing. And then we play music, Neil Diamond, Rod Stewart, the Commodores. Then we, we are all on Zoom together, can all see each other. And we note movements. We remind people that these movements are like activities of daily living, like maybe picking up their remote. We give them continuous feedback on their form and on their engagement. We acknowledge them, we challenge them, we remind them to work within a pain free range of motion, to stabilize themselves when they're standing from a chair, to continuously breathe. We run through a series of strength training exercises, their activities of daily living, but we use resistance bands to add extra resistance. We sometimes do them slower, so they're more strength building; sometimes we do them faster. And then at the end, there's a dance, and that is a little more aerobic. We watch a video of Sherry Zack Morris from Yoga Vista, and she has great videos. Then we end with taking heart rates, if needed. Then we say goodbye, keep up the good work, and remind them we'll see them in a couple of days.   Interviewer  37:25 It is such an incredibly positive and motivating supportive atmosphere. I hadn't watched for a for a while yet this semester and I got to watch this week. I started to try to do some type of count. I started to count moments or instances of positive feedback and banter, just trying to capture somehow, describe somehow, just how engaging this class is. You and Albert really are connecting frequently with the members. I think you actually try to track to make sure that everybody has had at least one, but usually it's multiple individual callouts in the session, which I think is really nice. People feel very listened to and present to the activity.    You started to describe some of these, but is there anything else you want to add to how we've made the classes more communicatively accessible? Albert noted the aphasia friendly emails, did we cover everything?   Jennifer Sherwood  38:43 During the classes, we have the video and the movements are very clear. The movement is named, so it's textually represented below the video. And then we also have a picture of the name of the exercise below the video. We're able to adapt the exercises and the cues to the pace that's appropriate for the individuals in the class at in real time. And so we can make sure that we're using easily understandable words, short feedback. We're speaking more slowly and we're articulating clearly.   Interviewer  39:30 Thank you. Well, I really appreciate how much effort and thought has gone into these adaptations. Michelle, can you share your observations about how individuals with more severe aphasia do in these classes. What have you noticed?   Michelle Gravier  39:48 Well, for all the reasons that Albert and Jennifer just articulated, it's really accessible to members with all ability levels, so even our members with more severe aphasia are able to really participate, and they see everybody else doing the exercises. Even those who don't feel comfortable or confident enough, maybe, to participate in some of the communication-based groups that we offer an ATP, really thrive in the exercise group. And you can tell, just as he mentioned, Albert and Jennifer are always giving feedback and support to numbers. Some of the members who, even at the beginning of the program maybe seemed a little bit more reluctant or not as engaged, it's really been amazing over the semesters to see them open up and really grow so much. So now, some of the members with more severe aphasia are actually some who are probably among the more engaged members.   Interviewer  41:01 We've talked a couple times about how we started out as in-person, and now we're online. Some of our programs are completely online, some are offering both in-person and online groups. I'd like to ask you to reflect on some of the pros and cons of this online versus in-person format. Online has been particularly wonderful because we've been able to include our doggie mascots, which are yours, Jennifer. They are the most wonderful dogs who seem to love to come keep you company while you're exercising, especially if you're making a video. So that's one positive, we get to have doggy mascots. Michelle, your cats show up now and then. Let's talk about the online aspects. Jennifer, are there things that you have observed or concluded?   Jennifer Sherwood  42:02 As you mentioned, at the beginning, when we were face to face, we were limited to eight participants. Now we can take as many participants as want to log-in on Zoom. The other thing is that people are on Zoom so they don't have to go to a place. They can exercise within their own home. They can exercise in a place where they're comfortable, their caregivers are there. They don't have travel time, it's easy for them to exercise. I was looking back at when we were face to face, and one of the things we were trying to do was develop pictures of exercises. I thought it was really interesting that now we have these beautiful videos illustrating the movements and that the members seem to really engage with.   Interviewer  42:59 That has been kind of a silver lining, the ability to use the screen and show videos which is harder to do in the class setting that we had.    We've mentioned several times this whole concept of making this aphasia friendly and more accessible. But I'd like to ask Jennifer and Albert as Kinesiology faculty, what has been helpful in learning to communicate with individuals with aphasia?    Jennifer Sherwood  43:33 As kinesiologists we enjoy physical activity. We know all of the benefits of physical activity. And there's no way that we could have communicated with this population for whom there's so many benefits of physical activity; there's no way that we could have communicated with this population without working with our speech and language therapists.    Albert Mendoza  44:05 I'm glad you brought that up. Because I was thinking about that the other day, that we have all this knowledge, all this evidence and guidelines etc. But it is not meaningful, especially to our group with aphasia, if there's not a way for us to translate that to that group, to that community, to those family members, those caregivers. So it's absolutely true. That is one thing that it allows us to do, right?   Interviewer  44:32 I think the beauty is, we appreciate your acknowledgement of learning the communication skills, communication partner skills, but there is no way I would even try to think about leading exercise class, like I see you two do and how you shape and model behavior. I am so grateful for your expertise and for you bringing it to us and to our members.    Albert Mendoza  44:56 Thanks and I think that's one of the cons. Jennifer was talking about the benefits of being online, there are many, but one of the cons is that we're not able to be with them, kind of anatomically next to them where we could help with--when we're online Jennifer and I can say, “You want your elbow to be fixed”, “You want to extend your arm here”, “Your shoulders back, chest back”. But when you're with them, you can, you can give more specific corrections. It's a little difficult because we don't always get a whole body view of the members since many of them are in a seated position because they need to be. But that's one of the cons of just not being able to be there with them. But, just short of that, we're able to watch them the best we can.    We give them not just encouragement, but also to make it a little more challenging--actually, Jennifer just recently started counting down like the last five reps of whatever we're doing, which has been awesome because she's always very purposeful. We talk a lot about moving within your pain-free range of motion, but also, slow and steady, slow and easy, no jerky motions. Jennifer will slow it down. We know that in our fields when you slow these movements down, they become more intense. But they're very purposeful movements. They don't have to be these large movements, but they have a large impact. I really appreciate the fact she's doing that because we get everybody counting together. That's something that I really do enjoy about the online, that we were able to be more specific and purposeful with some of the movements that we're asking them to engage in, that we engage in with them as well as Michelle.   Interviewer  46:46 There's a lot to learn. There are pros and cons for both formats. I'm going to go back to this accessibility issue and thinking about the students that you've been involving, in your labs and in this collaboration. How do the Kinesiology students learn about communication accessibility and being skilled communication partners? And do you see that this experience is helpful to their education and maybe translates into future job skills? What's been the approach to help train these students?   Jennifer Sherwood  47:19 Well, the first thing that had to happen, it was a key piece, is that they speech, language and hearing professionals, faculty and students, trained faculty and students from the Kinesiology department to use supportive communication and adapt the exercise delivery. We're modeling this as faculty, and as students, we're modeling this collaboration, this respect for another discipline, and willingness to learn from other professionals, and being able to practice within our scope of practice. We are not language professionals. And I appreciate that you acknowledged that you guys are not exercise professionals. I think it's really important for students to see how integrated we can work together. I feel like it's been incredibly educational and it's just been a really good environment. We teach students to collaborate. We're challenging them to extend their discipline, specific knowledge and skills, to plan and deliver and assess this physical activity interventions for adults with aphasia.   Interviewer  48:43 Albert, you've mentioned to me a couple of times that concept of translatable skills. Do you want to elaborate on that? I think about the trainers at my father-in-law's senior residence who come to the gym, and some of them are graduates of your kinesiology department, and they're really popular at this gym, of course--they are trained by you guys. I'm just thinking about the students who will come out now and have all this knowledge about aphasia and communication that will hopefully be helpful in these environments that they're going into.   Albert Mendoza  49:20 Building upon what Jennifer was saying, the ability to take what they're learning in the classroom and apply that in some meaningful way to a group of people, community, like this is important. Those are life skills, being able to communicate, but also being humble along the lines of what Jennifer was saying-- that knowing what's not in your wheelhouse and what is and just asking for help and asking for input and thoughts.    We ask this of our students, and we should be doing it ourselves. And if we're not, shame on us. We should model that behavior. It's been such a great experience. I've heard from students who've worked in the program that they see the relationship that we have, myself, Jennifer, and Michelle and the other students, and you as well, Ellen. And that makes a difference. It makes all the difference because it's more of the action versus just telling them what you should be doing. But they just see, we do it, and they get it, and if those that don't get it, it's ruthlessly exposed. It's something that they're able to take to their next step, right? And we talk about that often, like, setting themselves up with this experience and developing the skills so that they have more possibilities and options when they're when they're done.    And we have a student who has worked with us, and this person is still with us, they're going to be applying to PT schools. I was reading through her materials. She talks about the group of people she'd like to work with. I know that what she's applying with the aphasia group are the exact kind of skills that she'll need to be successful with this other group of people. She's talking about water therapies and things like this, but the way that she speaks and interacts with a patient, it reminds me how Jennifer interacts with them. It's like very aphasia-friendly.   You get it, I remember one day, we had a conversation, I said, “Oh, I'm gonna run into this person's house. I'm gonna have a quick talk with him, I'm gonna go”. And you're like, “There are no quick conversations with anyone with aphasia.” There's a lot to that statement. So that to me is another skill. And in this age, when we have less and less reason to communicate with people, especially face to face or eye to eye, it's kind of a lost art. So I'm glad that our students have an opportunity to grow in that way.   Interviewer  52:08 Yes, me too. It's been really rewarding to watch them and to get to be part of watching our SLP students lead the training for the Kinesiology students and faculty. We've talked about accessibility, I feel really good about sharing that, but I want to give you an opportunity to share any initial results. Michelle, are you going to start that part?   Michelle Gravier  52:33 When I was introducing the outcome measures, like I mentioned, we were using the Quick Aphasia Battery in the past tense. So I guess that gave a little bit away. But what we're finding is that the we didn't see initially any effect of participating in the program on language ability, as measured by the Quick Aphasia Battery. And so we just wanted to see if maybe that was just because we weren't using a measure that was quite sensitive enough. So we're actually adjusting some of our outcome measures that we're using this semester. For the cognitive outcome measure, The Test of Nonverbal Intelligence, our findings are similar in the sense that we didn't see any effect of participating on that measure. Similarly, we were thinking that maybe the outcome measure wasn't measuring quite the things that we might expect would be impacted by participating in an exercise group. The Test of Nonverbal Intelligence really focuses more on abstract reasoning and problem solving. Maybe there are some other domains of cognition, like attention, for example, that would be more likely to show some effects of exercise. But what we did find was that our members reported at the end of the semester that they on the BOSS, our quality of life measure, that they had fewer difficulties across all of those domains, but more specifically, that there were significant differences on the positive mood outcome. So suggesting, hopefully, that participating in the exercise group actually resulted in people having positive psychosocial outcomes.       Interviewer  54:23 It's really important to recovery. We know how frequently depression is an issue for people with aphasia, at such a higher rate than stroke survivors without aphasia, so I think any improvement in positive mood is really significant. Having access to classes and treatments that allow them to participate in things that might have an impact on mood is really vital. Albert, do you want to summarize some of the physical activity outcomes.   Albert Mendoza  54:57 Sure, so for physical activity outcomes, what we found were that steps and standing time increased in our group, and it happened to decrease in the control group. Our group took about on average about 1300 steps a day, which, in general 2000 steps a day is about a mile. So it gives you an idea of how much our participants step. But what was most promising was standing time, and they increased their standing time from pre to post over an hour, like 62 minutes daily, compared to the controls that actually decreased in standing time, almost 90 minutes from pre to post. So that was that was promising. And with sedentary time that both groups decreased in sitting time, not by much, but there was a little bit of a decrease. So that's, that's promising, it wasn't an increase.    Interviewer  55:45 And you're still collecting data. This is still a project and process, so there'll be more to come.    I'm going to ask if you have any recommendations for listeners, who might want to start an exercise class or do some research?   Albert Mendoza  56:04 I think I've mentioned this once before, but make friends with the Speech Language Pathology Department, if you're in the Department of Kinesiology, that'd be my first thing. The other thing is, you need to be invested. If you're not invested in the program, like if you're not really there for them, they're gonna sniff it out and you're gonna be in trouble. I think it's gonna make your life a lot more difficult. I'm sure you know as the educators, clinicians and researchers you are, but it's just been the vibe that I've gotten from being involved with a group. So that would be first recommendation, to really talk, go out and walk across the campus, go talk to another group of people, introduce yourself, buy them a cup of coffee, and have a conversation. I mean, that's really how it starts. It's building a relationship like any other. We need each other. There's no one can do it on their own.   Interviewer  56:59 I would really love to see more classes, opportunities, and more collaborations develop.    Albert Mendoza  57:07 That's in the pike, that's on deck, Ellen. Interviewer  57:15 That would be exciting.    So I'm going to direct one last question to each of you. What message do you want to leave the listeners with in terms of the value of interprofessional practice on this project, and/or anything else that you want to have the opportunity to say that you haven't had a chance to say. This is your moment. So, who's going to go first?    Jennifer Sherwood  57:42 I'll start. So, I just think there's no way that we could have started or would still be doing this program and expanding this program without the help of the speech language professionals. There's just no way and the things that that we've learned and that our students have learned, and the skills that we've gained, and the friends that we've made, are just, I mean, I feel really blessed and fortunate.   Interviewer  58:17 So do we. Thank you. Thank you, Jennifer.   Michelle Gravier  58:19 I'll go next. And just to add to that, I think everything that everybody has mentioned has been sort of alluding to this, but it's just really been an iterative process as well. I think that in addition to learning how to work as an interdisciplinary team and learning from each other, so they like more about exercise recommendations, and I think just learning from the members about what their needs are and how to adapt the program to make it work.   Albert Mendoza  58:57 I'm glad you said that Michelle, because I was just thinking that we've talked before about all the interviews and all the processes that your group goes through to collect data on all the members. I mean, very informative, very thorough. We've had conversations and Jennifer too, about like, maybe we could ask this question to find out, because we really wanted to know what's their take on what we're doing? How could it be better for them? So constantly reevaluating, but you check in with the members to find out what their needs are so that we can do our best to meet them from our direction, to meet them there.    I'm glad that Michelle had mentioned that because that's something that I thought about also. I had a cup of tea the other day and I like reading the little, I don't know what you call those in the back of the-   Interviewer  59:49 The piece of paper? Yeah, yeah, I don't know what that is called either.   Albert Mendoza  59:53 I read it to my students because I just got a kick out of it and it was a “Aspire to inspire before you expire.” I would say thinking about this project and what we're doing, like, I really hope that what we're doing is really inspiring to others to take action--to get involved somehow in their community or their families, to give, to share the knowledge, to share your experience, to give others an opportunity to improve their quality of life for the short time that we all have here. So, this is just one way that we're able to give back and say thank you to the members in the aphasia group, and hopefully, you know, this is just the start of something great. Isn't that a Neil Diamond song? I'm sure he has a lyric in this.   Interviewer  1:00:52 It's that time to start…. (sings)   Albert Mendoza  1:00:53 My aphasia! (sings)   Interviewer  1:00:57 Yes. Yeah.   Albert Mendoza  1:00:58 Ultimately, that would be my message, my closing thoughts about the whole thing because when we go drop devices off, it's kind of a double edged sword, because we do have to travel around and it's a little bit burdensome on the members, but having conversations with them with their---I had one person's wife tell me at the door-- they all want to say hello, right? So I just wait there, and I'm sure Jennifer and Michelle do the same. And while this person comes to the door, his wife said, “Hey, you know what? He actually walked upstairs to get into the bed, a couple days ago” or something like that.    To any of us, to me especially, that's not something that we really think about, right? Unless you've had the luxury of staying in a hospital, like myself and others, where you really forget that those are luxuries. Those aren't things that are just given, walking or being ambulatory, that's a gift. And when she told me that, it really resonated with me. I got in the car, and was driving back home, and I was like, that is so huge, what we're doing. She attributed it to, in part for him engaging in this program, because it somehow has resonated with him. And like, it just lit this fire.    I had another one, Jennifer had mentioned this earlier about people who were post stroke and when they're you six months to a year and then in essence, support fizzles out, right? It's nonexistent, right, for a lot of people when it comes to therapies like physical therapies. A member told me that her daughter has never been so physically active than when she's with our group. And she had physical therapists, according to the mom. To me, that was another win. So, little stories like that, anecdotal stories that coming from the caregivers and the family members. That just makes it all worthwhile. Like it's a good shot in the arm. It reminds me of really why we do this.   Interviewer  1:03:03 Well, I think those are all inspirational and motivating reflections. And I really, really appreciate the three of you making the time and sharing this project for this podcast interview today. Thank you so much, Michelle, and Jennifer and Albert. It is a joy to watch. You all collaborate and be in those classes and dance and move and do all the different things you make us do. It's really just wonderful. So thank you.   Albert Mendoza  1:03:35 It looked like you were just doing the robot. Is that what that was?   Interviewer  1:03:40 No, that was the YMCA thing... I was putting together all of the dances into one gesture.  So anyway, I just want to thank you again for being our guests today for this podcast. And 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 just thanks again for your ongoing support of Aphasia Access.   References and Resources: Blonski, D. C., Covert, M., Gauthier, R., Monas, A., Murray, D., O'Brien, K. K., ... & Huijbregts, M. (2014). Barriers to and facilitators of access and participation in community-based exercise programmes from the perspective of adults with post-stroke aphasia. Physiotherapy Canada, 66(4), 367-375. Dalemans, R., Wade, D. T., Van den Heuvel, W. J., & De Witte, L. P. (2009). Facilitating the participation of people with aphasia in research: a description of strategies. Clinical Rehabilitation, 23(10), 948-959. Gravier, M., Mendoza, A., Sherwood, J. Feasibility and Effectiveness of an Online Exercise Group to Promote Physical Activity in Chronic Aphasia Presented at Western Society for Kinesiology and Wellness Virtual Conference,  October 8th, 2021 https://osf.io/a85m4/ Harnish, S. M., Rodriguez, A. D., Blackett, D. S., Gregory, C., Seeds, L., Boatright, J. H., & Crosson, B. (2018). Aerobic exercise as an adjuvant to aphasia therapy: Theory, preliminary findings, and future directions. Clinical therapeutics, 40(1), 35-48. Luck, A. M., & Rose, M. L. (2007). Interviewing people with aphasia: Insights into method adjustments from a pilot study. Aphasiology, 21(2), 208-224. Neils-Strunjas, J. Aging Gracefully with Exercise and Social Engagement. C-STAR lecture, February 26th, 2021 https://www.youtube.com/watch?v=kLwrc_fukCw Neils-Strunjas, J., Crandall, K. J., Ding, X., Gabbard, A., Rassi, S., & Otto, S. (2020). Facilitators and barriers to attendance in a nursing home exercise program. Journal of the American Medical Directors Association. Nicholson, S., Sniehotta, F. F., Van Wijck, F., Greig, C. A., Johnston, M., McMurdo, M. E., ... & Mead, G. E. (2013). A systematic review of perceived barriers and motivators to physical activity after stroke. International Journal of Stroke, 8(5), 357-364. Pearl, G., & Cruice, M. (2017). Facilitating the involvement of people with aphasia in stroke research by developing communicatively accessible research resources. Topics in Language Disorders, 37(1), 67-84. Sandberg, C., Madden, E. B., Mozeiko, J., Murray, L.L., &  Mayer, J.F. (May, 2021). Therapeutic effects ofexercise in stroke and aphasia recovery. [Conference Presentation]. Clinical Aphasiology Conference, online. Sherry Zak Morris, Yoga Vista https://yogavista.tv/instructor/sherry-zak-morris/ Wallace, S. E., Donoso Brown, E. V., Saylor, A., Lapp, E., & Eskander, J. (2020). Designing Occupational Therapy Home Programs for People With Aphasia: Aphasia-Friendly Modifications. Perspectives of the ASHA Special Interest Groups, 5(2), 425-434.

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

Jerry Hoepner, a faculty member in the department of Communication Sciences and Disorders at the University of Wisconsin – Eau Claire, interviewed six very bright students about their experiences at the Aphasia Access Leadership Summit. Today, Dr. Hoepner is joined by Robin Pollens, from Western Michigan University to discuss their contributions and chat about student learning. So, get ready to kick back and enjoy these fabulous conversations.   As the title implies, we heard from six students from Florida, Michigan, Wisconsin, and California. They all attended the 2021 Aphasia Access Leadership Summit. Today, they will share a bit about their experiences and highlight why it is so important to engage students in Aphasia Access and teach them about the LPAA. I am joined by Robin Pollens, who many of you know as a wise teacher and mentor. She shares her perspectives on teaching and mentoring LPAA and some of the lessons she has learned from students. You're in for a treat! Abby Joski is a first-year graduate student at the University of Wisconsin – Eau Claire who served as a student ambassador at the Leadership Summit. She has served as a student clinician for the Blugold Aphasia Group and Chippewa Valley Aphasia Group.  Summer Marske is an undergraduate student, senior, at the University of Wisconsin – Eau Claire who also served as a student ambassador at the Leadership Summit. She helped compose many of the daily summaries at the summit.  Raveena Birdie is now a clinical fellow, formerly a graduate student at Cal State East Bay under the mentorship of Ellen Bernstein-Ellis. She and her peers gave a wonderful presentation on aphasia choirs and were awarded the inaugural Aphasia Access Student Presentation Award.  Nick Malendowski is a student at Central Michigan University who participated in the Strong Story Lab and collaborated on a project with Dr. Katie Strong and Dr. Jackie Hinkley on stakeholder engaged research.  Brandon Nguy is an undergraduate student at the University of Pittsburgh, mentored by Dr. Will Evans. Brandon gave a wonderful presentation on a scoping review of gender representation in aphasia research at the summit.  Clarisse El Khouri Faieta is a graduate student at Nova Southeastern University. She collaborated on a project with Dr. Jackie Hinkley and Dr. Katie Strong within the Project Bridge program on stakeholder engaged research.  We know that there are many more student voices and we value each and every one of them. For now, listen in on these fantastic students and you can refer to interview transcripts to see their wonderful definitions of the LPAA highlighted in yellow within the transcript.  Take aways: Learn from Robin Pollens examples of teaching and mentorship in the LPAA. Be buoyed by the hope inspired by this next generation of LPAA practitioners. Consider why it is so important to offer learning opportunities like the Leadership Summit, other Aphasia Access resources, and teaching/mentorship in LPAA principles.  Be inspired by the knowledge, insights, and accomplishments of future LPAA practitioners represented within this podcast, knowing that you have great next generation practitioners learning from each of you, at your universities, aphasia groups, and aphasia programming.  You are all teachers whether you are a professor, a group leader, a clinical supervisor, a partner of someone with aphasia, or a person with aphasia. Our students are forever grateful.  Interview Transcripts:  Robin Pollens' segment Jerry Hoepner: Hi Robin, so good to see you today. Robin Pollens: Good to see you today, Jerry. Jerry: Yeah, happy to have a conversation about student learning with you, as I know, that's something that's really important to you and your previous work has certainly inspired me in terms of mentoring, students and teaching students so, really, a pleasure to have this conversation. Robin: Thank you, I'm glad to be here. Jerry: So, I proposed a couple of big questions to you about our student experiences at the aphasia access leadership summit and thought, maybe that would be a good way to start you know the fall semester talking about student learning and mentoring students in the LPAA. So, I'm going to start you with the first big question which is from your perspective, why is it so important to teach and mentor students in the LPAA approach? Robin: I think a couple reasons. I think this is just the direction our field, thankfully, has moved into, not just for aphasia but, hopefully in general, where we no longer are thinking about what we're doing is just changing. Their speech in the room that they're in with us, but they were really thinking about it more holistically and how it impacts their life and students, I think they appreciate taking that approach once they get the hang of it, and I find that if we give them the tools to help them think about the bigger picture of somebody communication they get it right away, and if we start them out in the beginning of their clinical skill development. Thinking about people's impairment level and their participation level and their barriers in their environments, the wonderful World Health Organization, I see a framework that is thankfully part of our field now. If we model there for them right in the beginning and structure how they're thinking about meeting new clients, they can do it in a way. I feel like we ask a lot of the students because they're brand new and they're having to just think about how you say something to them, and you try to have them do something back and you write down what they're doing, and you keep track of a goal. I mean it's a lot of nitty gritty part of just doing therapy and yet we're asking them at the same time to think of a bigger picture. Jerry: I'm so glad you started with that because I think you're right, it's easy to get kind of hung up on the building blocks of what speech therapy is right with. You've got to understand what the person's impairments are and then you got to understand what the assessment tools are and how to deliver those and then think about the intervention pieces and thinking more broadly, from the start is a good place to begin right as, or I would say begin with the end in mind right, so thinking of that bigger picture, so I bet you have some personal experiences of how kind of that plays out in a in a learning context. Robin: Yeah, I have. I have several semesters that the end of the time had the students write a reflection thinking about the therapy that they just did and I framed it, I went back to the original LPAA statement back in 2000 where they were talking about how the clinician role is expanded beyond that of being a teacher or a therapist but they're also being a communication partner. To help them engage in conversation about their goals and their concerns as one thing, and the second new role is being a culture problem solver. So, if I provide that framework, these are the two different kinds of roles, you may have done, think about what you did this semester, how does it fit in? I find that the students get it that they're able to write down ways that their involvement in conversational interaction led to meaningful ideas, as well as how they ended up being a coach and a problem solver. It's interesting how we have to give them permission, in a way to just have conversation that that's an important thing it's not getting away from therapy that it's actually a part of therapy, so I'll just give you one example, one person was saying that when they were talking throughout the Semester. She was discussing all the barriers that the stroke could place and her ability to physically do her activities to do her work to do her, cooking things like that, and her concerns about coven and how that was impacting her ability to be with your family. And the same person later in terms of the problem solving and the coaching she said that the person was having trouble writing checks, and so it led to a new therapy goal of having a developing a format, where she would be able to write checks so from the conversation of meaningful life exchange comes real participation goals. And again, I believe that if we frame this from the beginning that this is what we're ever intention, I have found that the students are able to realize that that's actually what they're doing. Jerry: But that's just a really elegant eloquent way of connecting the importance of real conversation and investing time in that not thinking it's something different than therapy, but as a part of therapy and as a really crucial part of therapy to get at things that matter to that individual your examples were just spot on with if you approach that in a traditional manner, you might never have known those things even happened to that individual correct. Robin: Now I'd like to add one more thing on this part. Jerry, I think, using the life participation approach to a facial or any therapy makes for more meaningful work life. I think that the students, all of us if we're engaging this kind of work, we see the impact of our efforts, we receive from the clients from the patients from the people with aphasia we receive from them. The kind of relationship centered care interaction and it makes it so that I can then say to the students see how what a wonderful field you're engaging in it's so meaningful and they do by the end often. I'm sure all students do whether you're teaching for LPAA, our students at the end kind of feel sad or some connection when they're finishing up with their clients, I mean we all do, but I think if you have this kind of approach it adds to the possibility that that will happen for the students, and I like to model that awesome. Jerry: Yeah, such an important piece, and I think it does make it, you know, make therapy more rewarding and invaluable to us as well, makes our everyday work more rewarding just doing something that has a lasting effect on that person's life. I remember my very first. From well my clinical externship supervisor always asked me at the end of each day to reflect on what I did that really made a difference in that person's life, and it was a hard thing to do, initially when you're like I spent 15 minutes with this person feeding them, I know. But it's a really important self-check to think about what you're doing, is it really making a meaningful impact and all of those things can, if you set them up the right way and if you go into that intentionally as you're describing. Robin: I like that Jerry, never thought of it in those terms, but I've carried that with me to now. Jerry: But it's certainly been a lesson for me, and we've spoken to my mentor in a previous podcast, Mary Beth Clark, and that's always an impression that she has left on me to be sure. So, additional thoughts that you have about the importance of teaching LPAA or should we talk a little bit about experiential learning and what students gain from that type of a of an approach. Robin: Yeah, I think we can move on to the other topic. LPAA, what we haven't spoken about is the importance in the impact for the clients for people but that's not what this is all about so yeah, I think we could talk a little bit about that other topic about the hands-on experience. And I know there's all different kinds of hands-on experiences, ranging from full immersion, your wonderful aphasia camps that you do, I mean how much more hands on full can you have done that but there's lots of ways in between, also where the person has some awareness and understanding of how they aphasia is impacting them in their daily life. I was just reading back when I knew I was going to be speaking with you today one of the students' reflections and this was a student that. Clearly, had understood LPAA and had worked with a young man who's in his 30s have a stroke and aphasia clearly knew that the students wanted to return to work. And so, the therapy goals were very directed at work related skills very, very clearly. It wasn't until the very last week we had an a day which was like a semester day and all the clients were to go there and all the students and each of the groups had something the newsletter group printed the newsletter in the music group led some singing and it was you know, an interactive day and this student wrote in her reflection that she realized that that the client was off to the side of the room by himself and she went and spoke with them and found out he had anxiety about being with other people. And what she realized is even though she knew about her client's ability to interact based on his communication disorder. And she knew about his absence of physical barriers to participating she had no idea that he had some other emotional barriers that were limiting his ability to participate, so it really wasn't until she had an opportunity to see him in an actual hands on type of an activity that she appreciated the fuller sense of what was challenging to him and had a sense of she had known this there might have been an additional focus of a therapy. But still, for her we're thinking about students, it was a valuable lesson oh. What can happen in us with people in in a natural type of environment. Jerry: Yeah, I think that emphasizes the reason that we do things in in natural environments and environments that that person needs to communicate in because those are one of those moments, you could never predict come up and you have the opportunity to address them. I mean that's a big lesson that we've had at aphasia camp, you know when you're seeing someone from 6:30 in the morning till 10:30 at night there's a lot of things that happen, and you know you. Experiences you wouldn't have right walking to the restroom with someone or you know after they're exhausted after an activity right Those are the kinds of things that you wouldn't experience, unless you had that opportunity to interact with them, and in that authentic context so yeah so important. Were there other thoughts, you were thinking about in terms of hands-on learning. Robin: I was, I was thinking of an example of again because everybody all different university programs don't have the opportunity to do some more extensive types of in person hands on but many people are doing in groups, and so I was thinking back to a poster that several of students did for our state conference when I hear them think about, they lead living with aphasia groups couple different kinds. One focused on the clients might have to know more about aphasia the other one had to do with how it is impacting their life, what happens when they go the store what happens with their family so different kinds of living with aphasia groups. And then afterwards I had them, I asked them a question kind of like Jerry what you asked to your students in this I after the face to access it was a pretty open-ended question, I just asked them how to facilitating a living with aphasia group impact you. And they answered. And I went and looked up somebody your Yo and Yah published an analysis of learning outcomes from service-learning experiences. And came up with three themes and I realized wow I think having them lead the living with aphasia group was like a service learning. With this paradigm, and so some of the things that came up with one of the themes, has to do with cognitive development. And so, he asked the student said they learned how to use alternative modalities and learn how to teach word fangs strategies so Those are the things you'd hope they learn from any speech communication to ask. But they also said, one person said it helped me learn how to effectively navigate difficult emotions. And then, one of the other themes is understanding social issues and the student wrote this increase my sense of advocacy seeing how strong and determine these people are and how hard they work to communicate was incredible. And the third thing that you're going you talked about was personal insight and so they said things like wow some of my problems seem insignificant in comparison to what my clients deal with day to day, so there were all these layers of understanding and insight that the students learned other than the speech therapy tasks skills. And I think that um in terms of growing student clinicians I think that are those are helpful. Jerry: Absolutely and those are the same kinds of outcomes that we're seeing with camps, I think, whenever you have that opportunity to have that authentic and on experience in groups are a great example of where to get that to learn about the lived experience to learn about. Using strategies directly within a real context and so forth. yeah, that's the place to do it and it's interesting how consistent those outcomes are across those types of experiences so really powerful. So, Robin you've been so good as to listen to some segments from students who participated in this past year's Aphasia Access Leadership Summit and you got to hear some of the wonderful things that those students shared in terms of their understanding of the LPAA perspective and the projects that they were involved in that they presented at the summit. So, I know I'm really anxious to listen to those students' stories and to kind of hear some of your thoughts along the way. My big takeaway and listening to these students is that the future is bright, their understanding of the importance of the LPAA framework is really solid. And their definitions could be right there in any textbook. Robin: I think you should gather up those definitions and put them somewhere, I think that was great at how to take this big concept and place it into a sentence. Jerry: Yeah, they sure did a remarkable job, so let's spend a little bit of time listening to them and enjoying the next generation of students. Robin: Okay, thank you, yep.   Abby Joski's segment Jerry: Okay well hi, Abby. Thank you for joining us for this conversation really excited to talk with you about the Aphasia Access Leadership Summit and your experiences there. Abby Joski: Yeah absolutely. Thanks for asking me to join. Jerry: Absolutely. So, I thought I'd start with just finding out how you would describe the life participation approach. Abby Joski: Yeah, so this is- I took an aphasia course this past semester, and that was the first I've ever heard about it and I'm a huge fan of it personally, because it does take all the different aspects of the person into consideration when doing an aphasia intervention, instead of looking at just their language and how to fix that. It's also keeping in mind the things they enjoy doing their identity, their family members and it incorporates it all into a really holistic approach to aphasia. Jerry: Terrific so tell me a little bit about how you got involved in the Leadership Summit? Abby Joski: Yeah well, I'm really glad I did. I'm a GA through our CSD department, and so I got an email from I'm pretty sure you Dr. Hoepner that you're asking for students to volunteer to be ambassadors and at first, I was really kind of hesitant to do it because it sounded like such a big deal, it's such as huge Conference, and it was intimidating to a student but getting into it and learning about like the the Board of Directors and all the people putting it together. They were so welcoming and so nice and so they really took us students in and made sure that while we were volunteering to help, we also got a lot of really great experiences out of it. Jerry: Oh, that's great to hear, can you share a little bit about your experience? Abby Joski: Yeah definitely. So, my biggest role was I would attend the sessions and write in a in an friendly way. A newsletter for the day to catch up, maybe people who missed the sessions, or who want to kind of jog their memory about what that particular segment was about. So I really didn't have a lot of interactions with the Community Members with aphasia as much as I did with the people organizing the event but still the communication was really great and while I was watching. These different sessions and presentations just their interactions with the Community and the questions that came up from the people with aphasia, it was a really great community that I got to observe and be a little bit of a part of. Jerry: Terrific. Do you have a favorite moment from the summit? Abby Joski: I was there for the closing part. Oh hang on a sec, I got to remember her name. Can pause for a second here? Who is the woman oh Audrey Holland, yes. So my favorite part of the whole conference is at the very end where Audrey Holland came on to give some final remarks. Really send us out with some words of wisdom some inspirations and she really just opened the floor to questions. She's like, “Well what kind of questions do you have? Let's hear them.” And so, even then she really wanted to make sure that she wasn't lecturing as she wanted the Community to be a huge part of even this ending wrapping everything up making sure there are no final questions. So, I think that really speaks to how interactive and how supportive this whole process organization and community is. Jerry: Terrific, I couldn't agree more. Was there something in specific or something specific that you learned that you'll use in the future? Abby Joski: Yeah, what I know is really reiterated by so many of the sessions is that people with aphasia they are experts at aphasia at their life and we can't ignore that in being SLPs. So, whether it's the intervention process or assessment, they need to be a part of that and so collaborating with them, their family, and really making those goals functional to them needs to be the focus of everything we do. Jerry: Absolutely, those are great lessons to take away for sure. Why should other students get involved in Aphasia Access? Abby Joski: Well, I think, with Aphasia Access as a student there's so many different ways you can be involved in it, so you don't need to be just writing newsletters you can also be the person directing people to where they need to be. You know this year was a little bit different over Zoom, but as students, we do have the tech skills that we can bring to the table. But yeah, with students so much of what we learn is out of textbooks in class and very few of us have those real life opportunities to apply our skills and our knowledge, so I think it's just another opportunity where we can get involved and meet people with aphasia so that can just better give us tools and experiences and knowledge to help them and grow. Jerry: Yeah, that's terrific. Anything else you want to share about your experience? Abby Joski: Just some more students to do it. Jerry: Okay terrific. Well, thank you again Abby for having this conversation and hope to see you at another Aphasia Access in the future. Abby Joski: Yeah, absolutely. That'd be great. Abby Joski: Yeah absolutely. I do really appreciate it, Dr. Hoepner. You bring this like opportunity to students' attention and really bring us in and making us feel welcome. Even looking back at that very first meeting, where it was you, and like the big names of this conference I didn't feel out of place, and so I think that just speaks to how nice and welcoming everyone knows Jerry: That's terrific. Yeah, I'm always thrilled to have these opportunities. When I was just a new clinician and just getting started I had great mentors who connected with me with people like Audrey Holland and Roberta Elman and I just kind of thought it was something that everyone got to do so, I think it's just a great way to kind of level the playing field and see that you know, these people are regular human beings, like all of us, and we can approach them and we can collaborate with them all of those things. So glad I could share the opportunity. Abby Joski: Yeah, and if it's back in person next year I would love to make it. Jerry: Very cool.   Raveena Birdee's segment  Jerry Hoepner: Hi, Raveena. Good to see you today. Raveena Birdee: Hi, Dr. Hoepner, very good to see you. Thank you for having me. Jerry Hoepner: You are welcome. Nice to see you again after the Aphasia Access Leadership Summit. I'm happy to talk to you today about your experience at the Summit I'm wondering if we can start out by me asking you how you would describe the Life Participation Approach. Raveena Birdee: Excellent question and something that over my years as a graduate student and now as a clinical fellow I've thought a lot about and I think to me life participation approach, excuse me, is about making sure that a person with aphasia or someone with any kind of communication deficit feels like they can be connected to the things that they enjoy doing. You know if someone really enjoys gardening and they had a gardening club. How can we as speech therapists facilitate that for them, how can we be that bridge of supportive communication for them. So, to me, I think participate participation approach is about just making sure that the clients that we work with have access to the things that they enjoy doing. It's a huge change in we're lucky enough to be a support system for them and also teach their communication partners how best to communicate with them, I feel like that's such a huge part of what we do, yeah. Jerry Hoepner: I think that's a great point. That's a terrific description and I know there's a lot of people in Aphasia Access that will be excited to hear these fabulous definitions that students are providing and no longer a student now clinical fellow so I'm excited to talk about your experience at the Aphasia Access Leadership Summit. Can you tell us a little bit about how you got involved? I know you did a presentation and I know that went pretty well but tell us your story.   Raveena Birdee: Absolutely it did go very well and I think the Committee and I think everybody who made it possible, it was such a wonderful opportunity for us as a team. I was a graduate student at CSU East Bay and my mentor Ellen Bernstein Ellis, she told us about this opportunity and us being the aphasia tones choir team it's easy to East Bay. And she said, you know there's this really wonderful opportunity with aphasia access and we had heard of Aphasia Access, I think we are all you know, we really had our head in the books. I was, I think, studying for my comprehensive exams at the time. And so we thought, “Sure like we'll try we'll put something together that we're proud of” and that we feel like can be of help and if they want the student perspective we're more than happy to share, and you know meet some people and see what we can try to do and when we got accepted it was like such a party for us wow I didn't think we could do this, so it felt like just one really exciting step after the other yeah. Jerry Hoepner: That's terrific, can you tell us a little tidbit or kind of elevator pitch, excuse me, about your presentation at the summit. Raveena Birdee: Absolutely, and so I previously was something called Co-Director for the Aphasia Tones, which is a choir and aphasia choir for people with aphasia and this started at CSU East Bay about 11 years ago now, so it's acquired with a long-standing history and usually, you know, pre-covid, we would meet in person. We had about 25 to 30 members, and this is a part of a larger aphasia treatment program at CSU East Bay, so the choir is a small part of it but it was one of our most loved programs. It was so exciting to be a part of it was just wonderful to be in the same room together and making music and providing those communications supports and really making our Members feel seen and feel a part of a community and when covid hit, you know, for everyone life really just stopped and the choir team, which consisted of me and then my teammates Lucy and Megan Cleopatra and Christy, we thought how can we keep this going online? How can we figure this out via Zoom? And so, the presentation was all about us figuring out how to do an online aphasia choir and it was very tricky and we ended up observing a virtual connections choir session and that really helped guide us and also shout out to Dr. Tom Sather for giving us some guidelines. And so, we really took some of those guidelines and then we transitioned Aphasia Tones online and the presentation. I don't want to get too technical about it now I suppose, but it was very much about what are the technical tips and tricks to run and aphasia choir what are our core purposes, what are the principles that guide us? Is it learning something new, is it communities that engagement and it ended up being about all of it it's all important and the connection, I think the most important thing that connection between us and our Members with each other. The last thing I'll say about it is that and it was such a wonderful experience to do Aphasia Tones online, because I feel like our members and people with aphasia are already potentially socially isolated because of aphasia and because of those barriers to communication, and so it was an honor for us to be able to bring together our little community in a time of extreme social isolation during the covid pandemic and I think that was one of the best experiences of my whole graduate career just to have that and then present at Aphasia Access. It was wonderful. Jerry Hoepner: That's terrific. It's clear that you were really intentional and thoughtful about the process and that you had great mentorship like you said and that resulted in you receiving you and your team receiving the first Aphasia Access Student Award which was really exciting to be a part of so kudos to you and your team. I did get to see you in action a little bit as I joined one of your group meetings, one of your patient group meetings, and that was fabulous so it's clear you have a lot of investment in this. Raveena Birdee: Thank you, and I mean truly thank you to Aphasia Access. Thank you to you for that wonderful award we had no idea during the Leadership Summit, we had no idea what was happening in regards to the award and we were all just so grateful and so thankful, and I do want to be or not want to be necessarily, but I do want to say thank you for coming to Aphasia Tones rehearsal and I would like to give Dr. Hoepner a huge shout out because during the service this is still in the beginning stages of when we were still really perfecting the process and we were doing something called a call and response, and my group members, we had broken out into a small breakout room and I, I asked my group members if any of them wanted to sing a particular stanza and I think they were all feeling shy, and it was a new format, and so I called on Dr. Hoepner to sing a little bit of a song in front of you know 10 or so people and he did it so well, and I'll never forget that moment. It was so special. So, thank you, Dr. Hoepner. Jerry Hoepner: Absolutely, you're welcome. Always willing to help out, but the listeners couldn't hear that I was laughing because I muted my MIC for just a moment but yeah that was that was a good moment for sure. Do you have a favorite moment from the Aphasia Access Leadership Summit you want to share? It might have already been talked about but go ahead. Raveena Birdee: That is a good question because the good thing about the Summit is that it was a week long and I was just beginning my Clinical Fellowship. I'm currently a clinical fellow in the Oakland School District here in California and so I was working full time and then kind of popping into the Summit as I could but what was really nice about is that everything's recorded, and so I found myself when I had some more time to go back and listen to the prerecorded session or go back and look at the posters because I found that while I was really enjoying kind of popping into different breakout rooms and seeing and hearing people talk about their field and the amazing minds that were at this conference, you know as a student you hear these names and then being able to see them talk about their craft is so wonderful but I think my favorite part was hearing oh goodness it was Dr. Ellis and he was talking he was speaking about disparities in health care and, as a young person of color in this SLP field, that was something that was really, really interesting to me and it's a talk that I've kind of gone back to a couple of times on the recording on YouTube just to try to wrap my head around it. That was a really, really cool really cool talk. Jerry Hoepner: I've gotta agree and I, like you, I've gone back to that a couple of times, in addition to the live stream, because just such an important and powerful presentation so yeah completely agree. So, in addition to that, what's something from the summit that you learn that you'll use in your future? Raveena Birdee: Oh, goodness let haven't died um it's such a good experience, I mean I think it's I'm in a kind of an interesting place right now, because I really thought I would be working with adults in that population and working with people with aphasia for my clinical fellow fellowship, excuse me, but you know I ended up going in a different direction, and so now and working with elementary school children it's really interesting to me to see how the- trying to think of how to phrase this - but the principles that we use for different kinds of therapy apply everywhere. Yeah a lot of times I end up speaking a lot to parents about how to support their child's communication and it's not just direct therapy with my client but it's therapy and consultation and materials and assessing the environment and figuring out how to best connect my client with the things that are enjoyable to them, and I feel like that's life participation in a nutshell, of how do we, how do we make this functional, how do we make this work so that they're able- my client can feel comfortable and do the things that they want to do.   Jerry Hoepner: Raveena I'm so glad you said that and just a great opportunity, as we think about you know, the role of Aphasia Access in the life participation approach for other students and for other professionals, for that matter, it is a very universal principle and you can draw upon its kind of regardless of what setting you're in. Those are the priorities of helping another human being, through difficult time so really well said, and a great connection. So, with that in mind, that's a perfect segue to my final question for you, which is why should other students get to get involved in Aphasia Access? Raveena Birdee: Oh, I have lots of reasons why there are so many resources at Aphasia Access and even if you think that you'll be only working with children are only working with a specific population. Our field is so huge that there are so many different ways to interact with our clients like you were just saying and the other thing I think is so important is that, as a student we hear all of these names, we hear about these publications, we hear about people at other universities you know, doing research which is so important in our field and making these publications and giving these talks, and you know, giving really great evidence based practice, and you know changing our field, and I feel like Aphasia Access does such a great job of putting these people together, and I feel like for a student to kind of see what is happening currently in the field and then where we can go and how we can also further the field, because I feel like sometimes our jobs can be a little bit isolating even though all we do is talk about communication and connecting with people, but I think it's important for us as speech pathologists to connect within our field as well and I would also like to shout up Elena Bernstein Ellis who she gifted me with a membership to Aphasia Access when I graduated. It was just the sweetest and kindest and you know just very, very sweet thing that she did, and I appreciate it every day because I get those emails from Aphasia Access and even if I don't have the time in one particular day to like really look at the email or really look at the events coming up, they're in the back of my head and there's still something that I'm like, “Oh that's interesting I should look into that” and I feel like a long winded way of saying Aphasia Access is such a good way to keep on furthering ourselves in the field and not saying staying stagnant like there's so much out there and now we have the access to free dissipated is what I'm saying. Jerry Hoepner: Well, what a what a great takeaway or takeaways I should say for students and I gotta agree Ellen is one of the kindest people out there, so really a good shout out there. It's been fun talking, anything else you want to share before we end our conversation today? Raveena Birdee: Just that I am so grateful for this opportunity and I wanted to thank everybody at Aphasia Access and everyone who made the Leadership Summit possible it was again just such a great experience, one of the greatest experiences so far in my career and you know I want to speak for the Aphasia Tones as a team and say that we were all grateful for the opportunity and it was yeah it was just such a great experience and I highly encourage other students to get involved and see what's out there, I think sometimes as students, we feel like we just don't know enough yet, but these are the opportunities for us to learn to do it from such distinguished people like Dr. Hoepner. Never in a million years would I think I'd be sitting down with a one-on-one conversation with you. So, again just the opportunity is great you guys everyone really inspires us as students to keep learning and I think that's the biggest thing. Jerry Hoepner: Well, the future is certainly looking bright with all of you new students and now professionals out there, so thank you again, Raveena, have a terrific day. Raveena Birdee: Thank you, you too.   Summer Marske's segment  Jerry: Hi, Summer. How are you doing today? Summer Marske: Good, how are you doing? Jerry: I'm doing really well. I'm excited to talk about the Aphasia Access Leadership Summit and your experiences there. Summer Marske: Yeah, happy to share. Jerry: Say, I have a question for you. How would you describe the Life Participation Approach? Summer Marske: So, the Life Participation Approach I kind of see it as kind of a way to help patients with aphasia get back to doing the things that they love and focusing on things that are meaningful and functional. So basically, prioritizing their life goals and maybe that means incorporating their family members or changing their environment, to help make that possible. Jerry: That sounds terrific. That's a great description. Jerry: So, can you tell me a little bit about how you got involved in the 2021 Aphasia Access Leadership Summit? Summer Marske: Yeah, so I participated as a student Ambassador so basically what that means is I attended the presentations and then I collaborated with the other student ambassadors and we wrote newsletters after each session, which would be then later sent out the next day for the attendees to look through. Jerry: Very cool and I know that people really appreciated those daily updates and recap so thank you for your yeah, thank you for your contributions there. Do you have like a favorite moment from the summit that you want to talk about. Summer Marske: Yeah, so two things kind of come to mind, one of them was Gather Town, which was the virtual conventions ending and that was really cool to be a part of because I got to see and interact and watch different connections get formed between professionals from different parts of the world and I also really enjoyed the yoga session. I myself really like yoga so that was cool to hear from a stroke survivor and see how yoga played an important role in his post stroke aphasia recovery. Jerry: Absolutely That was really cool to see that directly from him agreed and the whole team did a really remarkable job kind of walking through the yoga together. That was pretty helpful in the moment as well in the middle of a conference where we're sitting a lot, so that's terrific. So, what was something that you learned at the Summit that you will kind of take and use in your future? Summer Marske: Yeah, one thing in particular that sticks out to me was the presentation on health care disparities and aphasia and all the different factors that go into stroke and aphasia outcomes. Having this knowledge will be useful in working as an SLP because I'll be treating a variety of culturally and linguistically diverse patients, so knowing how to give them optimal services will be necessary. Jerry: Yeah, I think that has to be one of the favorite talks from the week for me as well. Charles Ellis has so many insights into that and real practical thinking about how we approach that so agreed, I appreciate that as well. Just from your perspective, why should other students get involved in Aphasia Access? Summer Marske: I think other students should get involved because this is a very unique experience to have the opportunity to hear from professionals all over the world and specializing on their areas of interest and different topics regarding aphasia. Jerry: Yeah, agreed. What an opportunity to connect and kind of rub shoulders with some of the most brilliant minds, I think one of the great things I like about Aphasia Access is that everyone is so accessible and you know, no one is kind of at a different level where you can have a conversation with them. I think that is perfect for students to see this community of people all working towards the same goal so yeah, I really appreciate that as well. Mm hmm yeah anything else that you want to share in terms of your experience? Summer Marske: I'm mostly just really grateful to have had this experience it's unlike anything that I've done before. So, I definitely will take all this knowledge with me into Grad school and when working as an SLP. Jerry: That's terrific. Thank you again, Summer, for sharing and hope you'll make it to another Aphasia Access in the future. Summer Marske: Thank you. Thank you for having me. Jerry: You're welcome.   Brandon Nguy's segment Jerry Hoepner: Hi, Brandon. How are you doing? Nguy, Brandon: Good. Jerry Hoepner: Good, nice to see you today. Nguy, Brandon: Nice to see you, too. Jerry Hoepner: Well, I'm really happy to follow up with you after the Aphasia Access Leadership Summit to learn a little bit about your experience. Before we get started talking about the Summit, can you just talk a little bit about how you would describe the life participation approach? Nguy, Brandon: So for me, the life participation approach I would believe really wants to focus to help to improve the quality of life of people with aphasia right by helping improve the things that they want to improve in or they might be afraid to do because they may have aphasia and to really overall give them their independence back to live their lives again really. Jerry Hoepner: Excellent that's a great description. Well terrific. Say Brandon, I know you did a presentation, a really nice presentation at the Summit, can you talk a little bit about how you got involved and maybe a little bit of a nutshell of your presentation? Nguy, Brandon: Yeah sure. So last summer, I got a summer fellowship through my university and I was able to conduct my own research project during the summer, through the support of my fellow lab and research colleagues. And so, at the end, I really wanted to share this new information with others, I felt like it was really important and my colleagues recommended me to share it at a conference and they know that that Aphasia Access Leadership Summit this year really matched the theme of my study and then from there on yeah happened. Jerry Hoepner: Terrific. Can you share a little bit of an elevator pitch about what your research was about? Nguy, Brandon: Yeah sure. So, my study focused on issue of representation in the aphasia literature. And so, through a scoping review we extracted the demographic data of over 300 efficient articles from the last decade and we compared those particular data with the true demographics of stroke survivors. And so we found out that certain variables in aphasia literature are underreported such as race as like only roughly 30% of articles noted race in the first place and there were some demographic differences between the efficient literature and the general population who have aphasia, for instance, man and Caucasians were over represented. And females African Americans has been Latinos and Asians others were underrepresented. And so, overall, I know that the field of speech language pathology is emphasizing more diversity in students' faculties, but I feel like we also need to put that same our focus into representation in research. Jerry Hoepner: Oh, that's terrific. What a terrific nutshell version of that and what an important topic say, Brandon. I've got to ask, where are you in your academic program what level? Nguy, Brandon: I'm currently in incoming senior. Jerry Hoepner: That's terrific I really wanted to emphasize that to our listeners let them know you're an undergraduate student you just did a scoping review of 300 plus papers and came up with these really important findings that are relevant to the work that we do, day in and day out, as at least those of us who are in academics and research so wow Thank you so much, and what a terrific opportunity. I know you worked with Dr. Will Evans on that project and just want to emphasize how fabulous that is. Nguy, Brandon: Welcome, thank you. Jerry Hoepner: Okay, well, can you share a little bit about your other experiences outside of your presentation your experience kind of listening in and joining sessions at the Summit this year? Nguy, Brandon: And so, though I guess I you might have I just described my experience with like the poster. Jerry Hoepner: Oh, absolutely you bet. Nguy, Brandon: So, like, I guess, like do you want to restart or like? Jerry Hoepner: Sure yep. Nguy, Brandon: Okay. Jerry Hoepner: Yeah, we can do that. I'll do a lead in I got a little bit maybe more specific. Okay Brandon so, can you share a little bit about your experience at the Summit? Nguy, Brandon: Yeah, sure. So, throughout preparation for the poster, this being my first time you know at a conference and presenting research firsthand. They were just many things that I was just not aware of, and so through the help of my colleagues, I just asked a lot of questions. To step two things, step by step, and really tried to know the perspective of a researcher, I guess, and so, when beginning or on the first day of Aphasia Access, I was pretty nervous, but after watching a few keynote presenters and some of the events, I guess, a lot of nerves just went away and I felt really excited for it and so through watching a lot of the Aphasia Access, I really got a great understanding of how important evasion researches the people and how much passion, people have about this topic, how much people really, really care about it. Yeah. Jerry Hoepner: That's terrific. Do you have a favorite moment from the Summit? Nguy, Brandon: I guess my favorite moment was probably around the end with the award ceremonies and just how I mean just tell supportive people are. How just happy people were how supportive each other, they were in just how excited people were to keep continuing to do like these great things and I felt like man I can't wait for me to be on that stage and to be more in depth within research. Jerry Hoepner: Wow that's terrific. I have to agree just such a great family of researchers and clinicians and people with Aphasia Access. Very accessible as the name implies to talk with each other. So what's something from the Summit that you learn that you'll take with you and use in your future? Nguy, Brandon: So, through I guess the summit, I really got a great understanding of the value of research, where it's not just something that just happens on a whim it's a long process, but the results that come out of it like outweighs the hard work like it's at the end, like it's worth it and it really gave me a way understanding that everyone's in the same boat everyone's working hard, everyone is pursuing this great passion and there's really no easy way to conduct meaningful research and so that is something I just really took to heart. Jerry Hoepner: And that's a great lesson, terrific lesson. So as a student, what would you say why should other students get involved in Aphasia Access? Nguy, Brandon: So Aphasia Access is really meant to get to meet many people that I probably would not been able to meet in you know just in general, like I met so many professors and so many researchers from literally across the world, and that is just unbelievable for me, and it really gives you a creek perspective on if you're interested in research, like what you have to look forward that down the road. Jerry Hoepner: Yeah, that's terrific well thanks for having a conversation with me. Is there anything else you want to share with our listeners? Nguy, Brandon: I'm just you know, I feel like patience and ambition really works out at the end and it's just been a great honor and pleasure for me to present at Aphasia Access and for speaking today on this podcast. Jerry Hoepner: Alright, well, thank you so much, Brandon and look forward to seeing you again at a future Aphasia Access, maybe. Thank you. All right, take care. Nguy, Brandon: You too.   Nick Malendowski's segment Jerry Hoepner: Good morning, Nick how are you today? Nick Malendowski (He/Him): I'm doing well, how are you? Jerry Hoepner: I'm very good, thank you for joining us today. I'm excited to hear a little bit about your experience at the Aphasia Access Leadership Summit. Nick Malendowski (He/Him): Awesome, sounds good. Jerry Hoepner: Before we jump into that can you describe how you would just, excuse me, let me do that one over. Can you talk a little bit about how you would describe the life participation approach? Nick Malendowski (He/Him): Yeah definitely. So, when I think about the life participation approach, I often think about how it's helping people get back to what they're passionate about. This isn't necessarily about like what a researcher or clinician wants their client to do, it's about getting that person back to what they want to do. It's like when someone with aphasia has a stroke, or something that like, you know really impairs that part of their life. They definitely have the capability to do the things that they love and that can often really decrease that person's quality of life which can really just put a damper on a lot of things for them. So taking this type of approach with someone can bring back someone to what they love, which I think, as someone in speech sciences, that's really important because you want to help this person do the things that they really enjoy. And I've always been like super passionate about helping others find their passions. It's like, whether that be like finding their passion for what they're doing or finding their passion for something new, I think this approach really aligns with that. So that's why I just think it's really important to take that life participation approach with patients. Jerry Hoepner: All that's a great description and a great summary of what the life participation approach means for sure. Nick, tell me a little bit about how you got involved in the. Aphasia Access Leadership Summit. I know you did a presentation so maybe you can talk a little bit about that as well. Nick Malendowski (He/Him): Yeah definitely. So, I attended Central Michigan University and just graduated in May and I was also a member of the honors program there, so one of the requirements for being in the honors program at Central is that you have to complete an honors capstone project, which is pretty similar to like an undergraduate thesis. So, when I was thinking about what I wanted to do for that project, I knew I wanted to do something to better the lives of other people. Something that wasn't just gonna like benefit me in the long run, but also help other people with whatever that looks like and as a communication disorders major obviously I wanted to do something that was focused in communication disorders as well. I've been working in Dr. Katie Strong's story lab, but prior to approaching her about this project, I knew I wanted to do it with her. She actually is one that offered me the idea of working with Dr. Jackie Hinckley to work on a project that focused on the experience of stakeholders and research. So, prior to that, I really didn't know what that meant. I wasn't sure like what stakeholders were I didn't know what stakeholder engaged research was but it's something I was interested in learning more about which kind of how I got started on that project. Which ended up focusing on like the perceptions of researchers and stakeholders engaged research. So, when we are finishing up that project and began talking about like where we wanted to present the material at Dr. Strong and people suggested the Aphasia Access Leadership Summit and we all agreed it's kind of like the perfect space to present this research at so that's kind of how I got involved and then ever since then I've just been really taking part in all the different like things that we could do, as members of Aphasia Access. Jerry Hoepner: That's terrific. Can you give me just a little bit of a nutshell, these are what we found in terms of that stakeholder engaged research? Nick Malendowski (He/Him): Yeah definitely. So, when we were looking at the different kind of results kind of how we did it is we interviewed a few researchers to kind of hear about their experiences with a stakeholder and each research conference and there were four themes that we kind of got out of that. So it's a new way of thinking so kind of how this conference changed their perceptions and view of working with other people barriers that they experience kind of hearing about like you know, this is what happened this how things played out roles was another one so kind of hearing about like you know this, how my role has changed, these are the things that really were impacted and then the last one, And then the last thing that we found was motivations and so kind of hearing about like what motivated researchers to get involved with stakeholder engaged research because you know oftentimes we hear about top down research endeavors and kind of hearing about how researchers take that ownership and then have other people below them working with them but this is kind of hearing about like why they were motivated to attend a conference that was focused on bringing more people into research. Jerry Hoepner: Oh, that's terrific and what an opportunity to work with both Dr. Strong and Dr. Hinkley on something like this is just terrific. Nick Malendowski (He/Him): It was amazing. Jerry Hoepner: Absolutely. Can you share a little bit about your experience at the Summit outside of your presentation as well? Nick Malendowski (He/Him): So, unfortunately, I wasn't really able to attend to a lot of the conference, just because I was doing a lot of graduate interviews that we had a lot of finals preparation and things like that, but like I said, I was able to participate during the student poster sessions. So, I love really being able to connect with like the other professionals in a live session. I feel like I did miss out on a lot of networking over the past year just because of the pandemic, which makes sense. So, I just really appreciated how this conference was synchronous and I was able to connect with a lot of other people. Jerry Hoepner: That's excellent. Anything in particular that you learned that you'll take with you in your future? Nick Malendowski (He/Him): Oh yeah definitely. I learned so much just about like the research presentation styles and things like that. During other like asynchronous conferences that I attended, I felt that a lot of things were more scripted and weren't as like you know live and having conversations with other people. So, I'm planning on going to academia, so this really helped me gain a lot of skills and how to effectively engage with other professionals in those conversations. Just because I wasn't really able to do that with my other conferences so having this kind of informal conversation-based residence table to talk to other people was really beneficial for me. Jerry Hoepner: Well, that's excellent and you're right, that'll be great preparation. Why would you encourage other students to get involved in Aphasia Access? Nick Malendowski (He/Him): Yeah, you know I would encourage everybody to get involved with Aphasia Access. I feel like aphasia is so misunderstood. Especially to like the general public but also even to some communication disorders and speech pathology students and I think a lot of people don't necessarily know exactly what it is. So, having more students and even professionals get involved with Aphasia Access, more advocacy can take place and more connections can be made. I'm someone who really is passionate about making connections with other people, so I think that's a great way to do that. There's also just so many amazing resources for students to take part in like there's a lot of speakers and networking and just adding a lot to his students' skill set. So I would just absolutely recommend, whether it be just like a single experience or whether getting fully involved like Aphasia Access, I would absolutely recommend anyone to get involved. Jerry Hoepner: That's excellent. Well, it's been fun talking with you this morning, Nick. Is there anything else that you want to share? Nick Malendowski (He/Him): I just think I'm really excited to see what Aphasia Access is able to do in the future as well. You know I've never heard of Aphasia Access before this year so I'm excited to see all the new things that come out and excited to see all the different resources that are available to students and I'm just really glad that more advocacy is taking place for people with aphasia. Jerry Hoepner: Oh, that's terrific and we hope to see you again at other Aphasia Access events. Nick Malendowski (He/Him): Thank you so much. Jerry Hoepner: You bet have a great day. Nick Malendowski (He/Him): You as well.   Clarisse El Khouri Faieta's segment Jerry Hoepner: Well, good morning, Clarice. How are you today? Clarisse El Khouri Faieta: I'm doing well and yourself? Jerry Hoepner: I'm doing well. I'm excited to talk to you this morning. Clarisse El Khouri Faieta: I'm happy to be here. Jerry Hoepner: So, Clarisse, I've been asking other students a little bit about their experience at the Summit and I've started out with a question about how would you describe the life participation approach? Clarisse El Khouri Faieta: Well, to me, I think that it's extremely important to put quality of life over anything, especially with people with aphasia. So, I think that the life participation approach does a really amazing job of helping people with aphasia come back into society, so you know when you have a communication disorder. For a lot of these patients it's really difficult for them to kind of integrate themselves into society into even their families close contacts, and so this approach to therapy help centers to kind of give them a push or give them tools to be able to come back to be able to be comfortable with others talking with others, amidst their condition. Jerry Hoepner: That's a terrific description. So it sounds like you're well on your way to learning more about helping people with aphasia for sure. Clarisse El Khouri Faieta: Yeah, I do want to use that in my therapy. Jerry Hoepner: Excellent how did you get involved with the Aphasia Access Leadership Summit? Clarisse El Khouri Faieta: So, I am a graduate assistant for project bridge, so I work alongside Dr. Hinckley and she and Dr. Strong and Nick Malinowski, a student from Central Michigan University, we were working on a project about stakeholder engaged research and perceptions of researchers on stakeholder engagement research on so I did two presentations at the officially Aphasia Access. So one presentation was working directly with Dr. Strong, Dr. Hinckley, and this undergraduate student Nick Malinowski from Central Michigan University on researchers perspectives of stakeholder engage research and then another poster presentation, I did with Dr. Hinckley about survey responses based on what researchers people with aphasia their families thought about the Bridge Conference. So I did two poster presentations. Jerry Hoepner: Very cool, can you tell me a little bit more about that second one the stakeholder perspectives? Clarisse El Khouri Faieta: So the second one, with regard to the survey responses. Right yeah so um there were there was a Bridge Conference meaning the it's like a research incubator that links researchers people with aphasia clinicians and their family. The family of people with aphasia they link them together on like research teams, and so they held a conference in St. Petersburg and so we had a survey before the conference that we sent out and then a survey after the Conference, and so what we did was that we kind of looked at we analyzed what their perceptions on stakeholder engagement research was before the conference and how their perceptions changed after the Conference. So we looked at- we designed surveys, for example, for people with aphasia in a very aphasia friendly manner, we had videos of US narrating the questions to them, we change the font size all of that, and then for the researchers, you know, we had a list of questions like, “What is your thought of stakeholders engaged research?” all of that, so what we got in response to that was that a lot of their views have changed on stakeholder engage research after the 2018 Bridge Conference in a positive manner. So a lot of them or more knowledgeable about SCR and how to specifically help people with aphasia and their families contribute better in the research process. Jerry Hoepner: Oh, what a terrific program the Project Bridges and what a terrific measure of that you know the outcomes at the conference. Wow, that's terrific. Just such an important thing to collaborate directly with those individuals with aphasia about you know what what's going to help them the most in the long haul so terrific and great to hear those researchers' perspectives change to in terms of that collaboration. Clarisse El Khouri Faieta: Yes. Jerry Hoepner: Oh, that's terrific. I'm so glad that was part of your experience at the Summit. Can you tell me a little bit more about your experience outside of the presentations that you gave? Clarisse El Khouri Faieta: So, I was able to participate in some cases conference presentation, so we actually saw one presentation, that is the fruit of Project Bridge with that which I thought was interesting, which was the aphasia and games. Jerry Hoepner: Presentation and I thought that was fascinating. Clarisse El Khouri Faieta: And just to see what Project Bridge can help with to be able to bring people with aphasia and researchers together to be able to present and I just thought they did such an amazing job and I learned so much with regard to how else you know people with aphasia can contribute, and you know, the fact that they made a game for people to face with aphasia to be able to use that's also in a that's also functional you know so that was really interesting. Jerry Hoepner: Yeah agreed. Willis Evans and crew did a great job it was really awesome to see them all present together and yeah and the games themselves were really interesting and fun. So yeah, terrific. Jerry Hoepner: Do you have a favorite moment from the Summit that sounds like it might be one of them? Clarisse El Khouri Faieta: Yeah, definitely that's one of them. I also was able to participate in the presentation of the awards at the very end of the summit and Dr Hinckley actually got an award as well. And, just to be able to hear all the accomplishments of these researchers and these clinicians. You know it helped me to realize that this is such an important field. And it's a little underdeveloped, you know, in the sense that there's not many people that go into this field it's a very niche field. But just all the strides that people have made within this field to help people with aphasia. Especially to be able to you know help them with not only their communication disorder, but also help them reintegrate back into society and give them counseling and all that and make like foundations and clinics and this and that I think just hearing those accomplishments helped me to realize how important this this field is and how rewarding it is as well you know, to hear people's testimonies and all that. Jerry Hoepner: 100% agree, you talked a little bit about some things you'll carry into your future. Anything specific that you want to share that you'll definitely take into your future from this experience? Clarisse El Khouri Faieta: I just think that it's important to definitely put the patient first, before all interest and to also listen to them and their families, because we ha

Ellen Bernstein-Ellis, Program Specialist and Clinical Supervisor for the Aphasia Treatment Program at Cal State East Bay, speaks with Dr. Brooke Ryan. We'll discuss her research looking at the impact on children of having a parent with aphasia and the role of the speech pathologist in addressing these issues. She'll share her efforts to understand the lived experience of the children, the parent with aphasia and the parent without aphasia.  This year, our shows are highlighting the gap areas identified in the Aphasia Access White Paper authored by Dr. Nina Simmons-Mackie. This show hones in on gap area #10: Failure to address family/caregiver needs including information, support, counseling, and communication training. For more information about the Gap areas, you can listen to episode #62 with Dr. Liz Hoover or go to the Aphasia Access website. Guest Bio:   Brooke Ryan is a Postdoctoral Research Fellow, from University of Technology, Sydney, Australia working in the Aphasia Centre for Research Excellence, the aphasia CRE for short. Brooke is very passionate about improving the lives of families living with aphasia. Her research is distinct, because she is a speech pathologist, working interdisciplinary with clinical psychology to adapt assessment techniques and mental health interventions. Brooke's research has spanned many areas from living successfully with aphasia to the management of depression and anxiety post stroke. A specific focus of her work is on young stroke and in particular the impact of parental stroke on young children   Listener Take-aways In today's episode you will: Learn about some of the mental health impacts that children who have a parent with aphasia may experience and the gaps in providing services to this group. Hear about the advice a mother gives about the care she would recommend giving families when a parent with young children experiences aphasia. Learn about how the Behavior Change Wheel model may help identify barriers and facilitators in achieving desired behaviors.  Identify some specific roles and resources a speech pathologist may offer to families with children who have a parent with aphasia. Check out the show notes for a list of educational materials.   This transcript has been edited for conciseness: Ellen Bernstein-Ellis (interviewer):  Welcome to the episode Brooke. Thank you for being here today. And for being our guest and getting up at the crack of dawn for this episode. And for juggling Covid work-at-home logistics with children. I am so grateful you made this all work today. Thank you.   Guest: Brooke Ryan Thank you. I'm very privileged. And it's an honor to be invited to talk with your podcast. Thank you.   Ellen Bernstein-Ellis   I would like you just to share a little bit about yourself with our listeners. What can we do to describe who you are to them?   Brooke Ryan   Sure. Oh, that's a big question. To answer it simply, I'm from Brisbane, Australia. I have two young children that keep me really, really busy. One of my favorite things to do, just to share a little bit about myself, is having a cup of tea on my front porch with my dog while watching the sunset. It sounds a little bit silly, but it's something that I've found that's really mindfully relaxing. I really do enjoy that.    Ellen Bernstein-Ellis   We all have to find our approaches to replenishing, especially during this particularly stressful past year. So, if a sunset can do that for you, I think that's just wonderful.    Brooke Ryan   That's exactly right. And just to set the scene and where I'm talking to you from.   Ellen Bernstein-Ellis   Do you have a favorite clinical experience that points to the value of incorporating life participation approach to aphasia into your clinical work?      Brooke Ryan   Oh, great question. I guess it's my favorite clinical experience because it's had a silver lining, but when COVID hit back in March last year, the aphasia groups that usually meet in person had to stop meeting. There was a real push to try and get online aphasia groups up and running. And in Australia, we didn't have this model of service running frequently, and especially not through our community organization, the Australian Aphasia Association, so I was really involved in helping get those groups running. And I've been volunteering ever since. It's kept going since the pandemic, highlighting to me the benefit of aphasia groups in helping to reduce social isolation. I've really noticed a lot of things about those groups where we've been able to connect like young people with aphasia, or people with aphasia with similar interests, such as travel. So that's been one of my favorite clinical experiences, really, is experimenting with those online groups.   Ellen Bernstein-Ellis   Thank you for sharing that. And you actually just triggered something I wanted to mention, because you work with the CRE, The Australian Center for Research Excellence. I want to remind our listeners that they have produced an absolutely phenomenal resource for all of us. They have collected a whole bunch of resources. When it started out, it was like eight pages, and I think it's now up to like 15 pages, really tiny print of all these resources of how to do telepractice and other aspects related to COVID. Things that we need to think about and resources that will just help us navigate this unusual time. So just a great big thank you to your organization for creating that.   Brooke Ryan   Yes, that really is an amazing resource. I would like to tip my hat to a postdoctoral researcher within the CRE, Dr. Ciara Shiggins. She put a lot of effort into putting that resource together and keeps it up to date. It is available on our website You can download it in the form of an Excel spreadsheet. It will take you hours to go through the wonderful resources that have been contributed by the international aphasia community.    Ellen Bernstein-Ellis   We'll put a link in our show notes to that resource. I had the honor and privilege of getting to attend your recent Aphasia Institute webinar. You presented some of this initial research, which is why I was so excited to ask you to be our guest today. You absolutely got me from your very first slide because it had a quote from one of your colleagues, Dr. Rochelle Pitts, which said, “Since having my own children, I suddenly felt an overwhelming sense of responsibility, responsibility to the parents with aphasia supporting their children, whilst adjusting to the life changing impacts of stroke, and the children navigating a changed family.” Oh, my goodness, that just cuts to the core of my heart, actually. Thank you for coming today and sharing this important work.   Brooke Ryan   I really, really do wish that was my quote. But as you say, it was Rochelle's and I love it too. And it really does drive home the reason why both of us do research in this area,   Ellen Bernstein-Ellis   You both are parents of young children, right?    Brooke Ryan   Yes, Rochelle actually has four children. I've two and we often meet quite frequently. So our families are very close.   Ellen Bernstein-Ellis   Is that what really spurred you to publish the 2018 case study with Dr. Pitt? Could you tell our listeners a little bit about that case study?   Brooke Ryan   This case study is one that I will always remember. It's just one of those cases that really highlights the importance of this area. Rochelle and I set out to speak with families about their experiences of living with aphasia, and we sought to seek perspectives from all family members, including children. One particular family was interviewed, there was a single mother living in a rural area in Australia where limited speech pathology and psychology services were available. She had a young son who was the first one who responded to her. He actually found her after she had a stroke and was required to call the ambulance. We had the privilege of interviewing the mother living with aphasia, her mother, and the son about their experience some three years after the event. It was pretty full on.    So the son was age five, at the time of his mom's stroke, and then age eight, when we were talking to him. The family went through a huge amount of change during those three years, as you would expect. The grandmother actually had to move in and provide a tremendous amount of practical support to the family. We we're talking to all, both the mother living with aphasia and the grandmother. It was really evident in their accounts that the stroke event itself represented a significant traumatic experience for everyone involved. And it really did mark the beginning of a new timeline for their family.   Ellen Bernstein-Ellis   Thank you for sharing the story. It really gets to the core of why this work is so impactful.   Brooke Ryan   Yes, definitely. What really stuck out with me with that case study was that the grandma reported that the young boy had been affected and to use her words here, she said, “It took the spark back from him for a little while.” He wasn't as outgoing, and he was a bit guarded. You could really see that in our interview with the little boy. It really highlighted the need for both crisis support and ongoing psychology. It raised the question for me about the role of advocacy as speech pathologists when working with families. In this situation, it was a single mother living with aphasia. She really did report struggling being able to advocate for those services for her son.   Ellen Bernstein-Ellis   Wow, that's really powerful. I'm grateful that it resulted in you asking what research can we do? What do we know? What can we do better as speech language pathologists? I'm going to back up a bit and ask you to share with our listeners now, what do we know about the prevalence of adults with acquired communication disorders, who are parents of children 18 and under?   Brooke Ryan   The data on this is very, very patchy, and it is a very under-researched area. And so acquired communication disabilities is often embedded within broader types of disabilities, such as general stroke and brain injury. And so the literature out there focuses more broadly on those aspects. It is difficult to get the natural percentage of prevalence of parents with acquired communication disability. It's a research project that I'd really love to take on if we can find a way.    There is one sort of case or elevator pitch, if you like to call it. Often, I make the case that one in 10 strokes occur in adults younger than 50 years of age. And so that is the life stage where we're going to see parenting responsibilities, and we know that stroke incidence in young adults are rising. So, it is likely that speech pathologists will have people or parents with acquired communication disability on their caseload.   Ellen Bernstein-Ellis   Wow. Absolutely. And, you know, according to the literature, with impacts do children who have a parent with an acquired communication disorder often experience? What might we be seeing?   Brooke Ryan   Again, this literature is sort of coming from the broader literature of brain injury and stroke. So it's not specific to acquired communication disability. But I guess if we think about communication disability as a result of aphasia, for instance, we know that it can influence family functioning. And that can certainly impact interpersonal relationships. And if we think about the family, with parents and children, it can then have its own effects to parent and children interactions. And so we know that the inability to hold meaningful conversations can lead to family breakdowns, conflicts, and misunderstandings. Also, the literature suggests that children can also be required to undertake caregiver or parental roles, which can all lead to changes in the family dynamic, the family system, and parent-child interaction. There really is limited research in this area, and particularly in relation to aphasia.   Ellen Bernstein-Ellis   This all highlights the importance of the work you're doing. We've talked about the broader issues in communication disability at large, but can we hone in and talk about what the impacts might be on children who have a parent with aphasia, specifically?   Brooke Ryan   The literature is pointing to that children's well-being may be at risk. There have been studies which indicate that children experience increased stress, mental health issues and behavioral problems. There was a longitudinal study back in 2005 of 82 children, and they were aged between four and 18, whose parents experienced a stroke. Parents with communication disability were included in the study. And the study found that 54% of children displayed depression and behavioral difficulties immediately after the event. And by 12 months post stroke, nearly 1/3 had ongoing problems. So, this research really does highlight that there may be long term implications for children.   Ellen Bernstein-Ellis   The figures you just shared mirror some of the literature about the prevalence rate of depression in the adults with aphasia. For my next question, I want to find out a little bit more about how the mental health and behavioral changes look differently across the different age groups? Or is that research still waiting to be done?   Brooke Ryan   This is something that we really do need to understand more. We need to understand what factors are predictive of these increased mental health and behavioral difficulties, because that will be key to help us understand how we can better provide services to children that may be at risk of developing long term problems. Our qualitative research has really highlighted to me that we needed to consider that a parenting an older child can be more demanding and complex. And I guess that's no surprise. But in the context of aphasia, when one language is involved, this adds a complexity. We really do need to start considering the sustainable sort of rehabilitation services for families dedicated to understanding and helping the impact of aphasia at different stages of child development. It's really just about learning more.   Ellen Bernstein-Ellis   Absolutely, so much more to learn. What kinds of services may SLPs provide to children who have a parent with aphasia? What might that look like?   Brooke Ryan   I think we can have an enormous role in this area, especially if appropriately trained, and competent. We can expand our role into counseling and family therapy services, if we are trained, and I certainly know speech pathologists, especially in the UK, that have dedicated courses and are skilled in family therapy. But I think at the very least, we do have a role in information provision, and especially also with connecting other families with children together. It's been one of those silver linings of this pandemic, that we can expand out group-based services, like what I mentioned before, to connect people. I would really love to see parents and families living with aphasia, connecting more and joining in and having young stroke groups or parenting groups.   Ellen Bernstein-Ellis   That would be wonderful and being able to have Zoom allows us to have interest groups a little bit more easily, because the geographic region isn't as much of a barrier when you go on Zoom.    In 2020, Shrubsole, Pitt, Till, Finch and you published the first known study that explored Australian SLPs perceived needs, current practices and barriers and facilitators to working with children following parental acquired communication disorder. Seventy-six SLPs, were included in the analysis of the online surveys and your theoretical model utilized the Behavior Change Theory to study the issue. Specifically, your study design and analysis were framed within the COM-B model.    And that stands for capability, opportunity, motivation—domains that influence behavior. Before we even discuss the key findings, I thought it was such an important model, would you mind sharing and explaining the benefit of this particular framework? The lens that you use for your research study?   Brooke Ryan   My colleague, Kristine Shrubsole, the lead author on that paper, does use this model a lot. I would like to tip my hat to her again to her because she uses these behavior change theories to better understand how we can change our practice. And they are useful, especially when trying to understand a new practice area, and what might be the barriers or facilitators to be able to do something. The COM-B does have a number of advantages in that we use the term it can be mapped or linked to something called the behavior change wheel. And that behavior change wheel is really useful to develop strategies for changing behaviors. It can be really explanatory and how the different elements can influence behavior. So it's a really practical model, even though it is quite complex and very research based, but to be able to look at clinical practice and saying, what is the barrier? And what can we do about it?   Ellen Bernstein-Ellis   Reading about it in the article really framed it so beautifully. For me, it laid out how to think about the problem.   Brooke Ryan   Definitely. And so like things like capability refers to someone's capacity for achieving and behavior. That includes things like their knowledge and their skill. And opportunity is factors that prompt behavior, that make it possible. So things like our physical environment, our resources and our social influences. And then motivation comprises sort of reflective processes, so our intentions and emotions. By breaking the COM-B up like that, it's a really nice way to be able to study what's happening in current practice.   Ellen Bernstein-Ellis   Let's talk a little bit about the survey, then if that's okay. What did the survey reveal about the frequency with which the speech language pathologists actually saw clients with aphasia who had children 18 and under?   Brooke Ryan   This is a really interesting finding for me. The majority of speech pathologists, we had 76 in our study, I think about 61 of them reported that they had seen parents with communication disability who had children under the age of 18, in the past 12 months, and they had children across a number of age ranges. So they had seen parents who had children as babies right up until parents who had children who were 18.   Ellen Bernstein-Ellis   Wow. And in terms of perceived importance of this issue, did SLPs identify working with children as an important issue?    Brooke Ryan   Definitely, I think it was about three quarters of our participants indicated they believed there is a need to improve the services provided to children of parents with acquired communication disability. They describe things such as needing improved resources and better access to children and a provision of more holistic services. So they're definitely seeing it as an important issue.   Ellen Bernstein-Ellis   Okay, we know that the majority of the of the clinicians are seeing clients who have young children, 18, to birth, and the SLP is reporting that it's quite important that we incorporate some type of work with this. How often did SLPs report incorporating education, training or counseling of children into their sessions?   Brooke Ryan   It was a really stark finding that the majority of participants reported that they either never or rarely provided support or counseling to children. So over 80% of their sample said that they didn't have this either because of the opportunity or other reasons.   Ellen Bernstein-Ellis   Wow. So that's almost a disconnect. We know that it's happening, we know that it's important, and yet we haven't been able to provide the service. That leads me to ask if you could speak about the barriers and the facilitators as well that you identified in the study to providing these services.   Brooke Ryan   Using this COM-B model, we noticed that the opportunity barriers were most commonly identified with access to children being the most frequently reported barrier. One participant explained this, how the lack of access to the children resulted in a lack of attentiveness about the need to provide education to this population. And they described it as “out of sight, out of mind.” And interestingly, participants also reported a continuum of family involvement that influenced their practice. So, it either acted as a barrier or facilitator. Some speech pathologists reported that families were engaged and supportive. This really facilitated the service provision. Whereas some SLPs identified a lack of education and training as barriers to engaging children and services.    Ellen Bernstein-Ellis   It's really complex, right? There are just so many factors that we have to account for. And one of the interesting findings I noted, was the barrier reported by at least some of the SLPs of parents preferring not to involve their children as a way to protect them in the situation. Did this seem to be age related? Or did you notice other factors? And do you have any ideas about addressing this concern?   Brooke Ryan   Interestingly, speech pathologists did report that some families were reluctant for their children's inclusion in rehab. This is something that I would really like to dig deeper into, and I'm not sure we really have a clear-cut answer. Our survey was really just a surface sort of view of what's going on here. I think we need to understand this a lot more, especially from a number of perspectives, because our other findings have found that parents really do want to be involved in are in favor of including children in rehab. I think there's a big difference depending on their child's age, in terms of how we're going to include them and the types of services we provide.    But we also need to be mindful here also, especially thinking back to the case study that I introduced at the start. We should be guided by the family's wishes in terms of what they see as protecting children. We need to understand the circumstances around that a little bit more. We may need to work closely with psychologists or other multidisciplinary team members if we do think that trauma-related experiences have been involved.    I think there's something very different to working within a family-centered care model and setting parenting goals for our stroke rehab. We do need to be careful that it's not a blanket (decision to) include all children in therapy, because there is a little bit of research in the area of trauma that's indicated that if we talk too much, or too little about a potentially traumatic event, it's one of the clear risk factors for the development of more post-traumatic distress. I think it's really important to be guided by the family, but also be mindful to explore this area more.   Ellen Bernstein-Ellis   Sounds like we need to do some more research to try to understand what models will be helpful and we might be able to use.   I'm still struck, Brooke, by that big gap in terms of, we have the number of children who we think have ongoing impacts with mental health or behavioral issues. And then we have a large percentage of SLPs seeing families with children. And yet we're not providing (services). Would you say that children are an underserved group? How did your COM-B model help to identify ways to close that gap between the perceived need to improve services and behavior?   Brooke Ryan   I think that is one of our key findings from this study that speech pathologists are working with adult clients in this area who are likely to be parents, and they are on our caseloads, and there is potential to include them in our rehab. There is that gap that the majority of speech pathologists are rarely providing services. We need to look to being able to engage in these areas more and either provide services directly or indirectly, such as information provision and communication partner training, and potentially even counseling type services and referral to other health professionals.   Ellen Bernstein-Ellis   Let's go on to the more recent study that you're getting ready to publish, which ran two online focus groups on Facebook. One with five parents with aphasia, and the other (group) was six spouses of someone with aphasia.  These two groups were parents of a total of 23 children, 18 or younger. Your goal in this study was to gain insight into the lived experience of parents with aphasia, or of their spouses. Could you provide some details as to how you ran these groups and what you were asking or trying to hone in on?   Brooke Ryan   I have a love of qualitative research. I do like to understand the “why” a little bit more. So we used this qualitative study design and it was a real novel qualitative study design using Facebook. We used it for a number of reasons. But we did want to understand the lived experience of parents or families living with aphasia. We created two groups on the Facebook platform, one for parents with aphasia, and one for family members. We invited people to these groups and they were open for eight weeks. We were asking qualitative questions, like, “tell us about your life and family life with aphasia” or “tell us about how parenting has been impacted.” The groups were moderated by myself, Rochelle, and a final year speech pathology student and participants engaged in these discussions and talked with each other about their experiences.   Ellen Bernstein-Ellis   And the children in the study ranged from, like eight years old, but some of the parents had children up to age 18. Is that correct? So big range of age.   Brooke Ryan   Yeah. And I think that was even a parent of a young baby who was just like six months old.    Ellen Bernstein-Ellis   Wow. Well, let's talk about the four themes that were developed from the data for the group of parents with aphasia. And let's start with this theme that you labeled fractured family identity. Can you share some of those sub themes that came from that main theme?   Brooke Ryan   Yeah, so stroke in aphasia, has been described as identity theft previously, but this study really confirmed to me how aphasia influenced and was closely intertwined with each participant's identity as a parent. What we saw was that stroke and aphasia recovery really impact all participants' ability to be a parent. There was this real tension between stroke recovery and fulfilling parental role. That really stood out to me. So things like bonding and attachment with younger children were impacted. People often reported missing out on their children's lives, regardless of their age. I really noticed that there was particular difficulty experienced with parents during transition periods and as children grow older. So a quote that really stood out to me was, “It was difficult at the school environment. I wonder if I didn't have a stroke, if I would have been a school Mum during reading days or tuck shop, but I couldn't. I felt like I would have loved that.” I think the quote just says it all.   Ellen Bernstein-Ellis   Absolutely. And I would imagine there's just a lot of struggle around the communication you need to have as a parent. Sometimes it's hard enough when both people have their full skills. If one person has a communication disability like aphasia, that parent's discussions around parenting must become even more difficult.    Brooke, the next theme was poor emotional health. Could you please describe this data?   Brooke Ryan   Yeah, so parents, whether they were new parents or parents of older children often reported feelings of inadequacy and self-doubt surrounding their parenting efforts. And so difficulty parenting lead to feelings of frustration, anger, shame, self-doubt, worry, and even low mood and people said things like “not being the mom, I should have been.” And “aphasia has been tiring, emotionally draining, frustrating, and feeling that you haven't done enough.”   Ellen Bernstein-Ellis   Okay, those are powerful statements. It's really wonderful that you were able to get this perspective from the members.    And then you had a third theme called motivation to return to active parenting. So what subthemes came from that from that area?    Brooke Ryan   Children were a very motivating factor that was really evident in our data and really motivating for recovery and return to independence and parents roles. So people say things like, “the biggest motivation was to absolute smash my therapy for their children”, and people did report positive experience when engaging in therapy with their children. And often people talked about reading books together, learning the alphabet together, counting together. Children really helped with that acceptance and maintaining a positive attitude and pressing on despite really challenging times. And so someone even said, “I cope, because I have to cope. Because moving forward is the only way to get through it and hopefully get past it.”   Ellen Bernstein-Ellis   Really strong reflections on motivation and how important that is. Then you had a final theme, individualized support addressing family needs. Could you explain that a little bit?   Brooke Ryan   It was really about that practical and emotional support being necessary to get to continue fulfilling family responsibilities. People really did need that reliable support system of family members and friends to keep them afloat. That support was really important from other families with children, too. And being able to include daily and functional therapy tasks related to parenting, as I mentioned before, most often reading tasks. One person said the most effective treatment for him was and still is reading aloud to his son. And often this was incorporated daily into their lives. And being able to write letters, for instance, to someone's daughter, and being able to read that to her in the future, were really concrete therapy tasks addressing their needs.   Ellen Bernstein-Ellis   Three of these themes were also seen in the group of spouses, and the first, fracture family identity, isn't surprising. What did you hear from your spouse group members?   Brooke Ryan   Likewise, it changes to how family actively participated in life together as a family were really evident. And so one person described it as “we've gone from a family who used to be super active together, to a family that goes on long drives.” And so there was this sense of being less flexible within the family dynamic and a loss of childhood, people often described. And through avoidance of activity. So one quote from a spouse really stuck out to me that she remembered she decided not to go to the school's trivia (event), because she had envisioned her partner with aphasia's frustration at not knowing the answer and not being able to get it out quickly enough.   Ellen Bernstein-Ellis   Sure. I bet there's some other stressors for the spouses as well.   Brooke Ryan   Definitely. So loss of income is a huge stress and loss of shared parental roles. So especially for parenting tasks that require communication, most of the burden shifted to spouse or guardians. Someone described this as basically overnight, I became a single parent or full time caregiver.   Ellen Bernstein-Ellis   So we had fracture family. And then you also found poor emotional and relationship health was another theme from the spouses.   Brooke Ryan   People really did report this loss and grief as a spouse or a father or mother. And, again, to use the participants words, someone said, “Sometimes I do feel weird and wish that the outside world can understand that it's so strange to constantly be mourning the loss of a spouse who is physically still here.” And that just struck me to really describe that impact.   Ellen Bernstein-Ellis   Absolutely. That's a lot of adjustment for a family to make. So did spouses have any other sub areas that were different from the individuals with aphasia?   Brooke Ryan   They tend to report that they kept their communication to a minimum and describe feeling socially isolated and really missing the husband or partner that they used to be able to talk to, as well as difficulties with parenting, leading to frustration, anger and worry as well. And one thing also is having the time to be able to provide self-care, really. And when they did try and sort of have self-care, that there was guilt associated with that. A lot of people did mention needing to go to counseling to be able to look after themselves.   Ellen Bernstein-Ellis   These are really, really powerful. And the last theme that you identified from the spouse group, was individualized support addressing family needs. So what did your analysis find in that area?   Brooke Ryan   So within our rehab services, there really was a variety of involvement of families, and especially children. And it was on a continuum. So some children were actively included in the rehab and stroke services really embraced that aspect of parenting. Whereas for other people, a lot of advocacy was required. And there was though this tension of when involved in therapy services, their caring responsibilities placed on children, and there was a continuum of burden. And I remember a quote that someone said that they were really annoyed when a nurse in rehab said to the young daughter, who was just seven, that you're going to have to help mommy and daddy when they get home. And they just didn't want that pressure placed on this seven-year-old.   Ellen Bernstein-Ellis   Sure, wow. So these things really start to inform us and maybe, hopefully, direct the different ways that we can put services and supports in place to better address the needs of these families. Are there any other key takeaways from this study that you want to highlight?   Brooke Ryan   The key messages for me were that it was important to have this relationship and psychological focused care. It's really, really vital. We do need to have a connection and engagement as a family and work towards improving relationships. I think we can do that in a number of different ways. And I know Felicity Bright's work on relationship as a philosophy of practice will be key for that.   Ellen Bernstein-Ellis   Absolutely. And hopefully, we'll get to feature her in an upcoming episode. So I'm going to say stay tuned for more on that. But that really struck me in reading your work, the centrality of relationship centered care.   Brooke Ryan   Definitely, I think that's absolutely key.   Ellen Bernstein-Ellis   And you also remind us to be open to, quote, “meaningful ways to involve children across the care continuum.” So let's talk for a moment about what resources an SLP might offer to children. I'd like to start by sharing children's books, because I love children's literature. And thanks to you, I downloaded a new book. Alfie the Dog with Special Aphasia Powers to my Kindle. Do we have ample literature? Is this an area where we can enrich the choices?   Brooke Ryan   There are a few resources out there. But I think there's always room for improvement. I think this is an area that we can expand, more particularly, I really am in favor of co-design of resources. I would love to get children's perspectives on what they need and what they want from a range of ages. Because my son's five, he's often on YouTube and learning things through YouTube. So I wonder what sort of mediums are out there that kids will really relate to and I think that's definitely an area we can explore more.   Ellen Bernstein-Ellis   I will put the title of Alfie the Dog with Special Aphasia Powers, he's kind of a superhero,  in our show notes, but I'd also like to give a shout out to Maura Silverman and the Triangle Aphasia Project, because I was really struck at an ASHA convention I went to where she presented her project called Princess Crumpet, and the Baker of Batter Town, and it's a puppet show. And actually, the Triangle Aphasia Project website has a page dedicated to resources to educate and support children. So we'll put that link and the books you've suggested all in our show notes.   And talking about co-design, I'm just hoping that this show is going to inspire work exploring what types of resources and approaches are most influential. I'm going to give a shout out to two of my graduate students, Elise Nishiki Finley and Corey Riley. They decided to research what types of supports teens with parents who had aphasia wanted. And while we assumed that they'd like the idea of an online support group or something of that nature, which I've seen as a model for teens with cancer, our very small focus group told us that they would rather have liked participating in fun group activities with their parents and other parents with aphasia and their kids. So something social and normalizing as a way to meet others. It was just a great reminder of the importance of making sure your stakeholders have a voice in developing the solution. And that's a whole other topic for a future episode for us, as well.    But I want to go back to what you think about communication partner training with children. It seems to me like individualization will be critical. Every family has its unique dynamics. But how you might approach training a five-year-old, maybe on YouTube, will be very different from a 10 year old, and then a 14 year old. Do you have any thoughts about that?   Brooke Ryan   Yeah, I completely agree. And the data from our Facebook groups did tell us a little bit of insight into this. And so parents who have younger children, I noticed, they were talking more about focusing on teaching their children nonverbal communication, and waiting and focusing on interaction aspects a little bit more than perhaps, we may do with older children. And I think, as you say, older children do want to find creative ways to engage with their parents and maintain that relationship. And while I think that's absolutely critical at any stage, I think it's going to be tailored, depending on the age of the children.   Ellen Bernstein-Ellis   Well, another recommendation that you made, which really gave me a pause was that you said that SLPs might want to consider training and parenting programs. Could you expand on that idea for our listeners?   Brooke Ryan   I think if we are to start practicing in this area more frequently. It is a really good idea to be aware of evidence-based training techniques to give parents positive parenting solutions. So there are a number of evidence based, really high level evidence programs out there. And one example in Australia is the Triple P Parenting program. And I think as speech pathologists, we can take the ideas from this program and be able to adapt them for the specific needs of people living with aphasia.   Ellen Bernstein-Ellis   It's so important to think about that, that there's evidence out there about how we might want to approach parental training, so thank you for that. And you also suggest parenting related speech goals. Can you provide some examples?   Brooke Ryan   So again, from our study, participants said things like they want to be able to read aloud to their children. They want really practical stuff, such as providing chore instructions, for instance, on how to pack a dishwasher and help with homework. And things like food words were particularly important for young parents. The amount of times I know I've talked about food with my children, and children get really frustrated when you get the wrong word. And again, meeting other parents and children living with aphasia are really practical goals that we could be working on.   Ellen Bernstein-Ellis   Those are really good ideas. And very, very pertinent, and again, relationship-centered and individualized. So thank you for suggesting them. And of course, as we wrap up, I'm going to ask you this last question. Is there anything else you wanted to address about this topic that I haven't asked you about yet?   Brooke Ryan   So I guess we've covered so many topics in this talk. But I would like to leave the final words to be from a spouse of a parent with aphasia. And so to quote her, “In general, people underestimate how important parenting is. Even more than marriage, it changes the way you live your life, the way you spend your time, the people you hang out with, your hobbies and interests, your spending, and definitely your language. With aphasia recovery, you could spend at least half of your time with parenting specific goals, and it wouldn't feel heavy handed. I hope that clinicians can take this seriously and not just add it into what they're already doing.” And I'd just like to leave you with that, because it's so powerful.   Ellen Bernstein-Ellis   Absolutely. And I want to thank you, because I'm hoping this show will inspire work exploring what types of resources and approaches are most impactful and encourage other speech language pathologists and researchers to explore this more. So it just is so vital, I think, to the lives of the people we're serving. So, Brooke, I just want to thank you again, for being our guest today. This was just lovely, and an area that I'm so grateful you and your colleagues are working so hard to research. Thank you again.  Resources  Aphasia Centre for Research Excellence: Resources https://www.latrobe.edu.au/research/centres/health/aphasia/resources   Triple P online training  https://www.triplep.net/glo-en/the-triple-p-system-at-work/training-and-delivery/    Alphi, The Dog With Special Aphasia Powers, Kindle Edition, by Gail Weissman MS MA CCCSLP  (Author), Amy Koch Johnson (Illustrator)   https://www.amazon.com/Alphi-Dog-Special-Aphasia-Powers-ebook/dp/B08SVSGHTY    Supporting children after a family member's stroke- Stroke Foundation fact sheet file:///C:/Users/PF%205/Downloads/FS18_SupportChildren_WEB%20(1).pdf    Parenting after a stroke information  https://www.heartandstroke.ca/stroke/recovery-and-support/relationships/parenting    Aphasia - A Guide for Spouses and Older Children - The Australian Aphasia Association  https://www.youtube.com/watch?v=k_BMgCF7U_Q    How are children affected when one of their parents has aphasia?- The Australian Aphasia Association  https://www.youtube.com/watch?v=jgbdJuviTIE    Facebook group FAST Parenting After Aphasia (A group for parents who have had a stroke and who have been through the challenges of raising a child after a stroke. Just like 'mothers group', a place just to chat about issues in raising a child after your stroke (good, bad or funny stories!)  https://www.facebook.com/groups/307860196007933/   Tap Unlimited Children's Programs: https://www.aphasiaproject.org/about-us/our-projects/?v=7516fd43adaa   References  Shrubsole, K., Pitt, R., Till, K., Finch, E., & Ryan, B. (2021). Speech language pathologists' practice with children of parents with an acquired communication disability: A preliminary study. Brain Impairment, 22(2), 135-151.   Ryan, B., & Pitt, R. (2018). “It took the spark from him for a little while”: A case study on the psychological impact of parental stroke and aphasia on a young boy. Aphasiology, 32(sup1), 189-190.

Dr. Katie Strong, Assistant Professor in the Department of Communication Sciences and Disorders at Central Michigan University, talks with Rochelle Cohen-Schneider from the Aphasia Institute about the importance of developing and attending to our clinical selves. Rochelle Cohen-Schneider is the Director of Clinical and Educational Services at the Aphasia Institute in Toronto, Canada. She has worked in the field of aphasia (across the continuum of care) for most of her career spanning 38 years. She studied Speech and Hearing Therapy in South Africa and completed a master's degree in Adult Education in Toronto. In addition to her interests in clinical education, continuing education and working within a social model of aphasia Rochelle is passionate about understanding ‘how clinicians think, and why they do what they do.' In this episode you will:  Hear stories about clinicians connect the dots in the things you can't see as a clinician but have a critical role in the work you do. Understand the difference between reflective and reflexive work, and why both are essential to developing our clinical selves. Learn a few tips and some resources to broaden and deepen your clinical lens. KS: Rochelle, welcome to this episode of the Aphasia Access Conversations Podcast. I'm so excited for you to be here today, and to have this conversation and for our listeners to really hear about your work and perspectives. RCS: Thank you very much for this invitation, Katie, I'm really looking forward to digging into this topic with you. Thank you. KS: Oh, me too. I'm just so excited. And as we get started, Rochelle, I'd love for our listeners to hear a bit about your story and how you became interested in this area of the ‘clinical self'. That's powerful, that's powerful Rochelle. I mean I Wow. RCS: So, Katie, it became clear to me that the therapeutic encounter was a multi-dimensional endeavor requiring multiple skill sets, right from the days of being a student in, as you said earlier, in Johannesburg, South Africa. So, the physical structure of what was known as the Speech and Hearing Therapy Department housed both lecture halls, and small clinic rooms, where we, the student clinicians, carried out our therapy activities under the watchful eyes of our clinical tutors. These tutors watched from behind one-way mirrors and spent a lot of time debriefing with us about the session, our goals, the treatment methods, we chose, why we chose them, how we performed, and also how we enacted our clinical selves. In other words, how we related to our patients, where we sat, why we sat where we set, and we will often put through the paces to have us begin to understand how we positioned ourselves as clinicians. And it was really important in the clinical setting and how we learned to be, the relationship and relating to the clients was really, really important. And in fact, when we wrote our reports for our tutors, the first goal, regardless of age, or communication disorder, had to be establishing rapport. And actually, as the literature tells us rapport is actually only one small element within the clinical relationship. Maybe it's a gateway. It's a fairly static notion, because the relationship is much more dynamic, you know, interactive and an unscripted interaction. So because of the way this physical physically was set up, our academic and our clinical learning took place under the same roof, allowing for a very dynamic and stimulating learning environment, which focused both on rigorous academic growth and clinical development. So as a clinician stepping into the role of a clinician. And I think I might be able to say that this environment really helped us student clinicians “think with theory”, as Felicity Bright calls it. And we were trained to understand both the objective and subjective aspects of being a clinician and that fully engaging in a therapeutic encounter is really important. Another little aspect of this was in our third year of training in a four-year Honors Program, the clinical load was divided over four years and kind of matched what we were learning in those lecture halls. In the third year, we were observed by one of the professors from the psychology department. We had a couple of observations, and his job was simply to observe our therapeutic interactions, and how we engaged with the clients. And he obviously was not able to comment on the content of the therapy session because he had no idea. But he again, like our tutors, but even more rigorously asked us lots of questions around our positionality, both the physical and conceptual positionality, and all kinds of really very difficult and grueling questions. When I interviewed for the job at the Aphasia Institute, and I was interviewed by my boss, Dr. Aura Kagan, she asked me to tell her a little bit about what my day involved. That was one of the interview questions. I told her about the fact that I had to go, unlike the other professions, the physiotherapists who seem to have their own porter, me as a speech pathologist, had to porter my own patients or clients and I brought my clients into my room, and I started therapy. And she said, “Okay, no, no. Go one step down. Tell me more. What did you talk about when you were bringing the patient down?” Now, obviously, the patient was forward facing, and I was behind. But she was interested in the topics that I would think to talk about. And so, you know, we talked about what happened last night? Did you have any visitors? Did you watch TV? How's the food?  Anything else you want to say? And then I would get my office, I would wheel the client in, and then I had a ritual. I didn't realize it was a ritual. But I leaned over, and I put my white coat on. And that signaled to me, the clinician, that the personal self is out the door, and now I am the professional, I am the clinician.  KS: That's powerful, Rochelle. I mean, wow! RCS: And she said to me, “Okay, so what's the difference?” and she probed, and I started having the beginnings of the understanding of pulling together the personal self and the professional self, that maybe then becomes the clinical self. And this very clear demarcation fell away completely when I joined the Aphasia Institute, where there were no white coats, and there were almost no doors. And so, we worked in open spaces. And obviously, there of course, were times when doors and private spaces were called for. But I suddenly had this dawning realization that, you know, a couple of years, seven, eight years into my career, I had never, ever watched another clinician work. And here I was suddenly watching these brilliant clinicians work, and I wanted what they had. And so that set me on my journey. And, and just being very, very interested in how to develop that part of myself, that would engage our clients in a life participation model. KS: That is such a journey and I so appreciate you sharing that with us. You know some big ‘aha moments' about who we are as clinicians and how that changes or doesn't change based on who we're interacting with. I'm so excited to talk more about this. I'd like to first talk about an article that you co-authored a clinical focus article in the 2020 ASHA perspectives journal titled Spotlight on the Clinician in the Life Participation Approach to Aphasia, Balancing Relationship-Centered Care and Professionalism. Could you tell us a little bit about how this article came to be? RCS: Katie, before I tell you that I just want to...thinking about and talking with you, I've kind of connected many, many dots. And the dots are some are visual dots, some are auditory, some have cognitive, some are emotional dots. And so, one of the things that dawned on me, when I used to read to my children, there is a well-known book here in Canada called Something from Nothing. And it tells a story of a little boy whose grandfather is a tailor. And the grandfather makes the grandson a jacket. And of course, with each passing year, as the boy grows, the grandfather has to refashion the garment. It becomes a vest, then a tie and finally, the fabric simply covers the button. As the grandfather is snipping away, pieces of the fabric are falling through the floorboards. And unbeknownst to them, there is a little family of mice who live under the floorboards. And they're getting all these pieces of fabric. And they are designing and furnishing their house with this with this fabric. The minute I saw this image, I said to myself, that is what interests me. It's everything that we don't see. The mouses house was about one eighth of the page, (of the book). It was a fairly big book. And to me, that was the clinical encounter underneath. And when working with social workers for many, many years, I thought that that's where they worked, in the things that you can't see. And again, I wanted to go there.  KS: Wow! RCS: After the over many years of working together with Aura, we had spoken so much about the value of working with social workers and our learnings and how we really feel so privileged to have social workers by our side for so many different reasons. And one year at an Aphasia Access Summit, Aura heard Denise McCall and Ann Abrahamson, SLP and social worker respectively, from SCALE, The Snyder Center for Aphasia Life Enhancement in Baltimore. And she heard them give a talk about what they call ‘the dance', how they learned to work together, despite having such disparate perspectives. Denise actually bravely talked about what got in the way and how the speech pathology lens got in the way of the in the way of a satisfactory client encounter. And Aura came back to me and she said, “You know what, you've got to reach out to Denise and Ann because they think like you think.” And so that's kind of where it started. But also, in my quest to understand the nuts and bolts of how we do our job, I have also explored how my colleagues work and what they know about how they work. What I understand as their deep tacit knowledge. KS: What they know about how they work, that's deep.  RCS: That's what I'm constantly trying to understand. We don't spend a lot of time articulating what it is we know and why we do what we do. We spend a lot of time talking about the evidence-based approaches and absolutely we should. We should totally give as much time and attention to that as possible. But there's this whole, rich, rich source of information and rich source of data that we're all generating every single day as we interact with clients. And the literature tells us that these kinds of things are really, really important in understanding and dealing with because it makes us more effective. Clinicians offering evidence-based models, treatment services, assessments, etc.  KS: We are an ingredient to the therapeutic interaction.  RCS: Absolutely, absolutely. Many years ago, I read a research article, and I cannot remember exactly what it wasn't it, I think it was possibly not even our field. But the title of the research article was Hardening the Soft Data, which I think those of us and those of you who are involved in qualitative research are totally engaged with. But to me that really spoke to trying to take this whole, the subjective part of the relationship and trying to see exactly what it is. And so that sort of set me on the path with this article.  KS: That's great. So, the focus of the article is about relationship-centered care, and you co-authored it with colleagues, Denise from SCALE and social workers and speech pathologists.  It's really about relationship-centered care. I was hoping you could talk with our listeners about this approach to care and why it really is essential for our work as clinicians who embrace the Life Participation Approach to Aphasia. RCS: Yeah. In the article, the first vignette that I bring forward is the contribution of Denise, and Ann where they tell this story of a session, where they were working collaboratively with a client. The session by their account, did not go well. And as I mentioned earlier, Denise very bravely explains why in her opinion, it didn't go well. And she says, the speech language pathologist changed the subject, and ignored the social workers cues to continue the conversation. And so, a key opportunity was missed. And I thought so much about all of our missed opportunities, where we just don't have the lens to catch things that we don't see. So, they continue their story and tell us that they debriefed and obviously have a trusting relationship with each other. The interprofessional collaboration was enriched by that discussion. They go back and they resolve the issue. And it was a serious issue. It was a family secret that the client was carrying. And so of course, made me think about all the secrets that our clients carry. And what if you don't have a social worker to work with you? And so those of us who do are really, really, really fortunate. I think the contribution of social workers is significant. I think they inherently and as part of the learning, are engaged with learning about the therapeutic relationship, and also the tensions that arise from that, around professionalism and boundaries. And of course, their scope of practice naturally includes gathering information about goals, roles and interactions among family members and within social network. They are also interested in learning about clients and families before the health incident that caused the aphasia and of course, the impacts. So social workers de facto have always had a broader clinical gaze than we have. But of course, now with the Life Participation Approach, the model and the model of the A-FROM (Framework for Outcome Measurement in Aphasia), the model that Aura Kagan and a bunch of her colleagues have created. So, I think with these models we are catching up. And we are broadening our gaze and considering many, many more domains for our intervention. I think as we continue to understand the impact of aphasia, on all aspects of the client's life, we have no choice but to go there. And I think also in terms of the Life Participation Approach to Aphasia, which clearly puts the client at the center of the clinical endeavor, we've had to do our own dance, I guess. This again makes me think about Felicity Bright, drawing from sociology. She talks about our positionality in the therapeutic encounter and so we are no longer the expert. We are the expert guide, but the client is the expert of themselves. I'm not in a university setting, so I don't exactly know how students are being taught. I would imagine is such a tension between trying to teach the scope of our professional responsibilities and expertise, that I don't know exactly what's being taught. We need to shift these positions and to be open to partnering more with a client. I think we have to really follow and pay attention to the relay, a relationship-centered care framework. And Linda Worrell talks about this incredibly eloquently. She bases the work on the model that was developed for physicians. And, you know, talking about the fact that we as therapists, and our patients bring full dimensions of ourselves as people into the relationship. Thinking backward Aura challenged me, “You know, you can't leave yourself out the door, you came with yourself, even if you had to mark that moment when you transitioned, you came with yourself.” And so, as we are delving into clients lives and our position of power is changing, and we're opening ourselves to interrogating ourselves in a sense, based on how the clinical encounter proceeds. KS: Yeah. I love the thought of the broadening of the gaze. And your point to training clinicians, I think it's something that we really need to start paying attention to, early in the development. Just like you were sharing about your story with your own training and having someone be able to help you talk about, “Why are you sitting where you're sitting? Or  Why are you sharing with this? Or when this happened, by saying this, you shut, you shut the door or shut someone down about something that was very important to them.” I think it's, you know, really essential. I feel like, historically, we've ignored it or just expected that to happen after you get your knowledge about evidence-based practice knowledge. And I really feel like we need to be better at helping our students that were training into the field, to do such beautiful work to be able to develop themselves early on, so that they're able to better serve their clients and themselves really.  RCS: Yeah, yeah, absolutely. You know, one year I was at ASHA, and I went to a really powerful presentation, by the late Shirley Morganstein. And I looked around the hall. It was such a brilliant presentation. And I saw just older clinicians there. To your point, Katie, of, you know, you first learned this, and then you learn that. After the presentation, I went up to Shirley and we chatted, and there were a couple of other people standing around and just to your point of trying to get this in as early as possible. Kind of braiding it together the subjective and the objective. And just building that awareness, because the subjective enables the stronger version of the objective. KS: Absolutely. I think we've got work to do in that. I know you've been a guest speaker in the course that I teach. I've been fortunate to develop an elective called The Engaged Clinician: Our Behavior Matters. I think I've taught it for three or four years now. It's kind of viewed as a special time to be able to focus on that. And I think what's sad is that it shouldn't be special. It should be an integral part of how we train our workforce, our clinicians.  RCS: Yeah. And I think we're lucky that we are seeing a not a resurgence, but an emergence of interest. And we're seeing it from people who are thought leaders in our field and, you know, sort of narrower area. And so I think, it'll roll around. There's some really, there's some really amazing and powerful work being done right at the moment, which is exciting. KS: Absolutely. You mentioned earlier one of the vignettes. The article that you co-authored has six vignettes that provide examples of how SLPs navigated clinician-client boundaries. It's a fabulous article, it really is. I was wondering if you could pick one more to walk us through another vignette just to give us a flavor for the article. RCS: Sure, thank you. One of the exciting things is, some of these vignettes have been floating around in my brain for a while because I've, as I mentioned earlier, kind of after some of my colleagues. Each time I come back to them, I see something else, which is really enriching for me. And again, thinking about this talk today has given me some additional perspective. So. I will take you through one, and it's been Vignette #5. I titled all the vignettes, together with my second co-author, Melody Chan. We titled them to sort of give some clues. So, this is called Recognition as Relating. I'll just quickly read a small segment of this.  The SLP says, “the client was quite reserved, and he began telling me about his job. I could see that he took a lot of pride in it. And when I reflected that back to him, I said to him, ‘You're, quite a perfectionist.' He broke down and he cried. It was quite a moment because it was just one word.”  And as I think about this tiny little window into a clinical encounter, there is so much richness here. The client she was talking about an assessment encounter. She had just met the client for the very first time. It was not a long-standing relationship, and she recounts this piece that what had happened sort of at the beginning of the session is he had walked into the room, and he'd noted that the picture. There was a picture that was crooked. And so, he either commented, or he kind of adjusted it, I can't remember. And so, she was starting to form a picture in her mind. So, I think what happened was, it wasn't just one word. It was the fact that she's saw into this man. She saw into his identity, and she recognized who he thought he is. Who he is, his essential self. And I think what a moment for a person with aphasia, was had their whole life quickly, suddenly up ended by a very traumatic event. And his identity has sort of been shattered as well and stolen and all the words that that we use when we talk about identity. And here is somebody who he has never met. And she says, “I see you”. And that is incredibly powerful. And I think that my new reflection on this is that at that moment, the clinician must have been golden for him. Of course, I wasn't there. But I imagined that the level of engagement and connectivity must have spiked significantly. And so, I really have learned a huge amount from the work of Felicity Bright, and I'll talk about that in a little bit. But co-constructing engagement between a client and clinician is a relational act, it's happening with you pay attention to it or not, it's happening. The fabric is falling under the ground, it's happening. You're not seeing it. We're not seeing it. And so ultimately, the more engaged and connected a clinical encounter feels for the patient, the more positive the patient experience is, which leads to all kinds of positive foundational elements that allow a clinical encounter to be successful, and a therapy session to be successful, and a treatment approach to be successful. And so, for me in this vignette in this anecdote, the clinician is primed to look for identity. She knows how important this is. It didn't take any time. It took no time whatsoever. She still completed the assessment in the required amount of time. But that one thing, just hit the ball out of the park. It's such a powerful story to me. KS: It is what it is to me too. I'm a little teary and I've read the article before. But it you know, that's, you know what we're talking about. And not every session has to have that amount of power, but those little instances where they happen, weave together this stronger relationship where you're more willing and able to work collaboratively together, because there's this respect and trust.  RCS: Yeah.  KS: Thank you. Well, thinking about the critical incidents like the one you just walked us through with that vignette is really an integral part of developing who we are as clinicians or our clinical selves. And I know you've read a lot and examined this quite a bit in your experience, and particularly in your expertise in adult education. And I was hoping you could share a few tips for our listeners, who might be ready to expand their reflective practice. RCS: Absolutely, Katie. So, I think that the Master's in Adult Education was a direction that I really never thought that I would go. I had always thought that I would be interested in going back for either social work or psychology. I always had a deep interest in counseling. I think many of us who've ended up in this particular subset of a subset of a subset or subfield, many of us have this interest. But I was asked many years ago by a one different social work and speech pathology team to videotape a session that they were running with two couples were both in both instances, it was the husband who had had aphasia, they were doing a counseling, training kind of session. And so, sitting behind the camera, it became clear to me that I wanted to pursue what I'd always thought about, you know, you've heard that the seed from the very beginning, the whys and the hows of the clinical doing. It was clear, I didn't want to be the social worker, but I wanted to know what the social worker was thinking. And so somehow, I found my way to adult ed, and I think it served me really well. There was a lot of learning in something outside of our field, but certainly the, the field of teaching and learning, and education and pedagogy and teachers, and nurses really do a lot of self-examination. And so, there's been a lot of kind of building of theoretical models and thinking around what can help teachers and various other professionals look into this whole endeavor, or whether it be a clinical endeavor or a pedagogic endeavor. And so, I think one of the key things that I learned that I had to sort of sum up. There were two main areas, but I'll talk about what you've just raised, the reflective, is kind of thinking a little bit about both the reflective and the reflexive ideas. So reflective, to me is something that we tend to do afterwards. We reflect on how the session went. We pull things apart. And it's extremely valuable because it builds all kinds of muscles and lenses. But I think what became really clear to me, and what was really interesting was thinking about being reflexive, which would be in the moment of things happening, being able to identify it. And we don't always talk about that in our field. In in nursing there's a nurse educator called Patricia Benner and she talks about going from novice to expert. And I think that probably for those of us in the academy, that those are concepts that are well known to you. But we don't always talk about it out in the field. And so, reflexive is being able to make those tweaks as you go along. And, of course, that is what, whether you in the academy, or we're whether you're a field supervisor as I have been, it's what we're teaching our students. You know, make the adjustments as you go. Sometimes you can, and sometimes you can't, but look for them and see them. And then under being reflexive is critical reflexivity, which is understanding all about yourself, and how that impacts your environment. And so I think those were really, really key learning issues. And I just want to, I want to just take advantage of your question, Katie, if I may, and just go through one of the other vignettes that sort of demonstrates kind of reflexivity.  So, the clinician says, “I was scheduled for an assessment. And when I prepped and read the chart, I saw the client was a gentleman in his late 70s, early 80s. And I had an oh moment as I realized that this client was born in Germany, and that my own grandmother had survived the Holocaust. I did have a bit of a personal reaction to his potential life situation at that time, so I had to check myself in the moment, aka do a little moment of reflexivity. And I had to make sure that I wasn't showing the reaction to the client.” And the clinician realizes that having been attuned to her critical reflexivity, she says, “I guess in that moment, it was a point of growth. Because I didn't think that early on in my career, I would have been able to have that self-talk in my head, and still be able to carry on with the assessment.” So, I think, you know, she caught herself, she had that little conversation with yourself in that moment. It was a real moment of reflexivity. And I would imagine, I never have asked her that she's added that to her toolbox of critical reflexivity. And she now knows that about yourself a) what triggers her and b) what she can do about it. So, I think that was the big learning from adult age.  KS: And you know, that's just so important because, you know, we haven't really talked about this at all today and didn't really plan on it, but the aspect of stress levels and burnout and you know, taking care of ourselves as clinicians and, this work of reflection and reflexivity is helpful in helping us to navigate the really intense experiences that happen when you're living a clinical life. RCS: Yeah. Yeah. And there is I won't read the vignette, but the last vignette in the article is about is a clinician telling a story of how negative how negatively a client impacted her, because he embodied all the things that ran counter to her values of how she lived her life. And this tension of, you know, duty of care and intense dislike of somebody. And I think what we drew as a collective as our team from that, is there has to be a safe place. Back to your point about stress and burnout, there has to be a safe place that a clinician can come and say, I cannot work with this gentleman. Who does he not trigger? And if he does not trigger you, could you please be the one? And that's actually what we did. So, this is making time for reflection and reflexive talk, and is really important butt it has to be in a safe environment for clinicians. Yeah.  KS: Well, so, you know, I think most of us think about things like journaling or talking with colleagues. Not complaining with colleagues, but debriefing and really sharing about, where you were, where you were at, and what you were thinking and how you're feeling currently, you know, are really vital parts of our job. What are some of your top resources that you would recommend for someone who wanted to explore into this area? RCS: Yeah. Yeah, absolutely. So, I'll break him down into two major categories. The first one, I will just run off a couple of names within our field, whose work is so inspirational and so groundbreaking and continues to break ground, even if they've been saying and talking these thoughts for many, many years. So, I'm going to start there. I do have to talk about the impact that my boss Aura Kagan has had on me, and Nina Simmons-Mackie, Audrey Holland's work from being a student in South Africa was absolutely (inspiring). Discovering and falling upon this work, and this reading was just, you know, an absolute godsend. It felt like an oasis in a desert sometimes. So Audrey Highland, Jackie Hinckley's work, and Linda Worrall's work. Felicity Bright's' work. And Martha Taylor Sarno's work. I don't know if people have read and if it even possible to get hold of a lecture she once did called the James Hemphill Lecture or award or something that. These works just helped to open up an additional lens and an additional dimension. So those are people in our field. And Katie, classes like yours are also groundbreaking for clinicians to, as you said, to be learning early on. So those are really, really inspiring.  In terms of stepping out of our field, an area that has been extremely important and influential for me, is the area of Narrative Medicine, in all of its forms. And a lot of medical schools are starting to adopt the principles. Narrative Medicine comes out of the medical humanities. It involves using the arts to help clinicians see and think and develop what's called narrative competence. I'll give a shout out to a group of clinicians in Toronto who are using a Narrative Medicine framework for some student training. And we at the Aphasia Institute have jumped on board as they've allowed us into join them. This is very, very powerful in helping students write and tell stories from the perspective of the client. Very, very important. There so there are Narrative Medicine courses. The Narrative Medicine, Columbia, runs an incredible Narrative Medicine course and Jackie Hinkley will back meet up. We found each other at the course many, many years ago.  KS: Oh, that's fabulous! RCS: So, that that would be a strong recommendation, then on Twitter. And I do see sometimes speech pathologists, and whatever we do with Twitter. It's the handle the hashtag is #medhumchat. And it's sometimes worth just scrolling through there to get just great thoughts and ideas. I omitted to mention all of the clinicians who are part of that original Life Participation Approach to Aphasia core group, any of them and their work is really instrumental in in moving us forward in this domain. And finally, looking outside of the field into the field of maybe social work for courses. I was very fortunate to be able to take a two-year externship in family therapy. And the clinician is, well there's no way to hide in that field. And so, there's a lot of things that I learned and I'm thinking about it from there. And so, again, encouraging people to look outside of the field for any education.  KS: Thank you. I know you sent a list of some favorite reads and so we will have reference citations and some links in the show notes. We'll make sure to put the med hum chats hashtag in there also. So be sure to check out the show notes if you're listening and you're wanting to dig a little bit deeper into this. Rochelle, any thoughts that you'd like to share as we start to wrap up this conversation today? RCS: Yes, I'd like to just share just two final thoughts. The one is what you actually had said, Katie, you know, they are all these great resources out there, but there are a lot of things that clinicians maybe can do locally, in their own departments. And so, you know, not complaining, you said by talking about, both for the purpose of de-stressing, and for the purpose of deepening, and building lenses and muscles. One of my biggest learning opportunities, and I mentioned it early, has been to see and watch and hear and feel my colleagues working. I don't know if that's possible for people to do. You don't have to do it often, just once asked if you would be permitted to sit in and watch a session where you work, you know. You both see the same thing. And ideally, of course, like we do with students, sometimes if you can record it, but I know there are issues of time and privacy, those do get in the way. But at least looking for sort of things that are in place already, that you can just think about different topics. So, if there is a journal club, or case discussions, once in a while just shifting the focus onto some of these. Remembering the image of the mice underneath just to the tiny little piece, the liminal space underneath there, I think it could be really helpful. And I just am going to end off with a story. And a resource that I did not mention, Cheryl Mattingly, who is an anthropologist, who has watched occupational therapists, and I am not exactly sure how that came to be. But there's an incredible vignette that she tells, and I don't have the book because it's sitting in my office, and we're not yet back on site. But it's the story goes something like she observed a young occupational therapist, doing a session with a group of older gentlemen, possibly in a Veterans Hospital. And when she walked in, the gentlemen were, you know, they were in wheelchairs, they were hunched over, they were drooling, listing to one side. And the girl, the occupational therapist came in the clinician came in, and she sort of sat down. It took her a minute, and then she looked out the window, and she said, “isn't it you know a glorious day? “And then she said, “Oh, I'm really excited about my vegetable garden or something.” And I sort of get goose bumps. Katie, you had tears. And I've read this a million times. But suddenly, Cheryl Mattingly says these gentlemen sat up, stop drooling, paid attention, looked at the clinician, and she could imagine them in the gardens with a bottle of beer, leaning over digging into the beds, and it became a very animated discussion. And then she says, and then something happened, and the occupational therapist said, “Okay, now let's get to our task.” And whatever the task was, it was the most boring, soul-destroying task. And these men, that she had enlivened, and awakened, suddenly just became, like they were in the beginning. It's a beautifully rendered piece that she writes, and she said, she was just heartbroken. She was heartbroken for the men, but she was also heartbroken for the clinician, because she missed such an opportunity. And so, I would just encourage us to, you know, look for the opportunity look for the buddy, the buddy colleague who might have the same lens as you and build on that together and hopefully impact everybody around you.  KS: Thank you, Rochelle, this has really been a delightful conversation. So much to think about. And you inspired me, and I know our listeners will be thinking more about the important role that we have as clinicians as people as persons as in contributing to this thing we call therapy. So, thank you so much. It's been great to have you on the show.  RCS: Thank you so much, Katie. And thank you for your work.   On behalf of Aphasia Access, we thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org If you have an idea for a future podcast topic email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.   Websites and Social Media Aphasia Institute  https://www.aphasia.ca/   Aphasia Institute on Twitter @Aphasia_Inst    Links Mentioned in Episode Boundaries and Clinical Self Readings Cohen-Schneider, R., Chan, M. T., McCall, D., Tedesco, A. M., & Abramson, A. P. (2020). Spotlight on the clinician in the Life Participation Approach to Aphasia: Balancing relationship-centered care and professionalism. Perspectives of the ASHA Special Interest Groups, 5, 414-424. https://doi.org/10.1044/2019_PERSP-19-00025  Duchan, J. F., & Byng, S. (Eds.). (2004). Challenging aphasia therapies: broadening the discourse and extending the boundaries. Hove, East Sussex: Psychology Press. Penn, C. (2004). Context, culture, and conversation. In Challenging Aphasia Therapies (pp. 83-100). New York, NY: Psychology Press. Sherratt, S., & Hersh, D. (2010). “You feel like family…”: Professional boundaries and social model aphasia groups. International Journal of Speech-Language Pathology, 12(2), 152-161. doi:10.3109/17549500903521806 Walters, H. B. (2008, Fall). An Introduction to the Use of Self in Field Placement. In The New Social Worker: The Social Work Careers Magazine. Retrieved July 26, 2019 from https://www.socialworker.com/feature-articles/field-placement/An_Introduction_to_Use_of_Self_in_Field_Placement/  Kagan, A. (2011). A-FROM in action at the Aphasia Institute. Seminars in Speech and Language, 32(3), 216-228. doi:10.1055/s-0031-1286176   Clinical Engagement Readings Bright, F. A., Kayes, N. M., Cummins, C., Worrall, L. M., & McPherson, K. M. (2017). Co-constructing engagement in stroke rehabilitation: a qualitative study exploring how practitioner engagement can influence patient engagement. Clinical rehabilitation, 31(10), 1396-1405. doi: 10.1177/0269215517694678 Bright, F. A., Kayes, N. M., Worrall, L., & McPherson, K. M. (2015). A conceptual review of engagement in healthcare and rehabilitation. Disability and Rehabilitation, 37(8), 643-654. doi:10.3109/09638288.2014.933899   Kayes, N.M., Mudge, S., Bright, F.A.S., McPherson, K. (2015). Whose behavior matters? Rethinking practitioner behavior and its influence on rehabilitation outcomes. In K. McPherson, B.E. Gibson, & A. Leplege (Eds.), Rethinking Rehabilitation Theory and Practice (pp.249-271). Boca Raton: CRC Press, Taylor & Francis. Worrall, L., Davidson, B., Hersh, D., Howe, T., Sherratt, S., & Ferguson, A. (2010). The evidence for relationship-centred practice in aphasia rehabilitation. Journal of Interactional Research in Communication Disorders,1(2), 277-300. doi:10.1558/jircd.v1i2.277 Narrative Medicine Readings Charon, R. (2008) Honoring the Stories of Illness Oxford University Press. New York Hinckley, J. H. (2008). Narrative-based practice in speech-language pathology: Stories of a clinical life. San Diego, CA: Plural Publishing Inc. Medical Humanities Chat on Twitter @MedHumChat   #medhumchat

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.

Dr. Katie Strong, Assistant Professor in the Department of Communication Sciences and Disorders at Central Michigan University talks with Dr. Natalie Douglas from Central Michigan University implementation science and how this applies to aphasia practice.   Natalie Douglas is Lead Collaborator at Practical Implementation Collaborative, an Associate Professor in the Department of Communication Sciences & Disorders at Central Michigan University, and an Editor at the Informed SLP. She completed her B.S. and M.A. degrees at Ohio University and after a decade of clinical practice as a speech-language pathologist in hospital and long-term care environments, she completed her Ph.D. at the University of South Florida. Her work aims to advance best, person-centered practices in communication and quality of life interventions for people with dementia, aphasia and other acquired communication disorders in adults. She additionally aims to empower local healthcare and educational teams to support best practices, quality improvement initiatives and person-centered care through applying principles of implementation science. In this episode you will:  Learn about what implementation science is and how this applies to aphasia practice Hear about how using an implementation lens can lead to better outcomes with clients and families.  Learn about Sam, the Bocce player, his sauce, and the importance of a person-centered approach to care in people living with dementia. KS: Natalie, welcome to the Aphasia Access Conversations Podcast. Thank you for joining us today.  I'm looking forward talking with you and having our listeners learn about your work.   ND: Thank you, Katie. I'm always so happy to talk with you, especially here today.  KS: So, I feel like we should share with our guests, a couple of fun tidbits about how you and I are connected before we get into the meat of today's conversation.  ND: Okay, let's do it. KS: So first and foremost, we are colleagues at Central Michigan University. We share actually share a wall. Our offices are in the same hallway, although with pandemic, it's been awhile since we have both been in the office together. So, we are colleagues and have a lot of great fun together. But we have another way that we are connected as well.  ND: Yes. So, we crossed paths. I think in the early 2000s. So, I was working at a certain hospital system from 2003 to about 2013. And then I came to find…this was in Florida, by the way, we're in Michigan now. And then I found out that you worked for that same hospital system, also as an SLP right before I started, or something close to it.  KS: I did! Yes, we came up to Michigan in 1999 so I was there just a couple of years before you were, and we had shared colleagues! ND: Amazing. KS: Crazy. ND: It was meant to be can't get away for me, I was going to find you!  KS: Absolutely, well fate! Fate. I love it! NS: Indeed. KS: Let me first congratulate you on being named a Tavistock Trust for Aphasia Distinguished Scholar. It's fabulous! Tell me a bit about what this award means to you.  ND: Thanks for that so much. And this award really means a lot to me. I'm just so truly honored, grateful and humbled to receive it, along with people such as yourself and many other esteemed colleagues. And upon finding out about the receipt of this award, it really kind of prompted me into a lot of reflection from when I first started studying speech language pathology. So, this was, you know, in my undergrad degree in 1997. And I, a couple years after that, was introduced to what aphasia was. And, you know, this was further nurtured by working with Dr. Brooke Hallowell. And then continuing, you know, through clinical practice and trying to improve life for people with aphasia, working with Jackie Hinckley in my PhD program. And it really had me become extremely reflective upon what I've been doing recently, which is more system level changes. So how can we ensure that people with aphasia and other communication disorders, how does everybody have access to the best interventions? How do we make it so that best practice is not based on where you have your stroke, geographically speaking? You know, how do we spread what we know, works for people? How do we get the word out so that it becomes routine based care? So, this award, it just served as a catalyst for a lot of deep reflection and gratitude for the work that I've done in the past and now and also for the work that needs to be done in the future. So, I'm just extremely grateful to the Tavistock Trust and colleagues and mentors for this really humbling award. So, thank you for that. KS: Congratulations! The award is well deserved, and we are excited to hear about your work, both the work you have been doing and the work the will come in the future too. Natalie, as we get started, I'd love to hear the story of how you became interested in implementation science as an area of research and expertise.  ND: Sure, so, I think like many of us, when I was working in a clinical setting, there were many problems that I didn't feel like I had the ability to solve with my clinical training. So, you know, I just, quite honestly would leave clinical practice at times feeling honestly, full of guilt and shame, quite frankly, because I felt like I wasn't giving clients and patients and people the best possible services for one reason or another.  KS: I feel like a lot of people listening who are working clinically or have worked clinically in the past can really relate to that. You know, we all get into this field to help people and then when you get into it, sometimes that help isn't as easy to do with a lot of the barriers that are in place.  ND: Yeah, exactly. You know, and for me, you know, there were some cases where it wasn't necessarily an issue of me not knowing what to do. So in in many cases, I had the knowledge and in some cases, I had the skills. Not in all cases, there was often a skill gap to but in some cases, I did have the knowledge and skills to provide a certain evidence-based practice, but I still wasn't. And until I came across implementation science, I thought it was my own personal, I mean, honestly, moral failing why I wasn't. KS: That's heavy. ND: Yeah. I don't know that everyone hits existential crisis, like I do. But I mean, I really did, because it didn't feel right. You know, it didn't. It didn't feel right. Um, so it was, you know, the inability to solve those types of problems that really kind of propelled me back into academia. And so, when I first started my Ph D program, with Dr. Jackie Hinckley, I thought I was going to do something with aphasia treatment research. And I don't know how she remembers this, but it was sometime around in 2009. Jackie gave me a monograph, just a little book by Dean Fixen and colleagues and it was about implementation science. And it talked about how there was an entire discipline, dedicated to really merging the gap between research and practice. And it showed that there are mechanisms kind of outside of me as a person that influenced what I was able to do clinically. So factors like, what the organizational culture is like, what the organizational climate is like, things like insurance, reimbursement, policy. You know, all of these factors that are really outside the individual realm of the clinician, that we have data to show that it really does, those other factors influence what we're able to implement on a clinical level. And so I just kind of devoured that monograph, and quite honestly, been thinking about it, ever since in one iteration or the other. Because it's not just our field, you know, it's not just speech language pathology, it's not just aphasia, you know. This is across education, mental health services, every medical specialty. You know, we the way that we've created these systems of academics and practice, we've kind of reinforced silos. And so, the two don't always meet without active work. And that, I think, is what implementation science can really do. It can provide tools to kind of bring those realms together.  KS: It sounds like it was really a mind-blowing experience for you to have that monograph in your hands. ND It was mind blowing. Indeed.  KS: And how lucky we are that it got into your hands. Well, I know many of us have heard that term, Implementation Science, but it isn't always clear what is meant by that. Could you help us to understand that a little bit more? ND: Right. I think that's a really great question. And I think it's definitely not something to take for granted. You know, as helpful as, as implementation science is to our discipline. Within implementation science, there are a lot of constraints in terms of like language and terms, so it can get a little bit foggy, hazy pretty quickly. But the NIH or the National Institutes of Health definition of implementation science is really the study of strategies to help to determine how to best implement an intervention or evidence-based practice into a typical practice setting, usually as delivered by typical practitioners. So, this is not a situation where you would hire an interventionist or a graduate student, for example, to implement your assessment or intervention tool in a typical setting. I mean, there's definitely nothing wrong with that. But that's not in that could be, you know, if you're following a stage model, you know, that could be a direction that you go. But I think the guts of implementation is having, you know, and I think the routine typical clinician is a beautiful, amazing thing. So, I hope it doesn't don't when I say routine and typical, I really don't mean it in a negative way. But to get just really everybody on board.  KS: You mean your average, fabulous, SLP who is out there working directly with clients and families.  ND: Exactly, exactly. So, what we can do is just like how you would study the effectiveness of an intervention, okay. So, you have, for example, communication partner training. That's an example of an intervention in our discipline has a lot of effectiveness data, right? We know that it works, right? When it under certain parameters, we know that it can support communication and other quality of life outcomes. So, what you would do is, in addition to studying the effectiveness of an intervention, or if the intervention has already been studied, you could study the effectiveness of an implementation strategy. So, for example, you might say, “Okay, if we put in some type of audit and feedback system, does that increase the uptake of communication partner training?” Or if we provide incentives in some way, like some type of certification, or honestly, you know, the ultimate, not the ultimate, but a very effective implementation strategy is paying people to do something, right. And so that's, we don't do that in our field. But if, you know, as I said, a little bit earlier, you know, this is something that's, you know, grown outside and kind of encompasses many disciplines. You know, if I think about myself, and what causes me, you know, to want to change my individual level behaviors, right? There's like, certain incentives that might get me to do that. But those are implementation strategies, and not necessarily the intervention itself. Right? So, implementation sciences, like how do we get it into that typical setting, delivered by a typical practitioner, in the best way? So, just like how you could comparatively assess, you know, two different naming interventions for aphasia, you could assess two different implementation strategies. You can say, “Okay, if I put audit and feedback in one condition, and then I put education and training and another condition, am I going to get different adoption rates?” Right, will, more people do it in x condition versus y condition? Does that make sense?  KS: Yeah it does. So, taking the example you used for communication partner training, and we know that it has a high level of evidence that it works, but I'm not sure if our fabulous, everyday clinicians are using it on a regular basis. So that would be a step to then have some sort of implementation study or protocol to help basically get the evidence out into practice. Is that what we're talking about?  ND: Yeah, it is right. So right. And you kind of said it without saying it. So, one example of an implementation outcome would be something like reach. Okay. So, it's like, if we looked at all of the potential places where communication partner training might be beneficial, right? How do we get that number up? You know, with fidelity to what communication partner training actually is, right? Which we know is not just handing somebody a handout, right? So, you know, those are the types of kind of questions that you might ask, you know, and we can use an implementation science framework to kind of guide our thinking, you know, like, how do we get this reach up? or higher? How do we know, you know? And it gets messy, you know, it definitely gets messy and there's, it's complex, a lot of these questions. But these are the types of questions that I really think we need to be asking if we're wanting to advance these positive outcomes for families. KS: Yeah. And I think that messiness kind of substantiates how you were feeling back when you were working clinically. Right? That you had this knowledge and skill.. ND: That is true. KS: But you can't actually get it going into your day to day practice.  ND: That's right. Yeah. KS: Thank you for explaining that. I really appreciate that, and I think our listeners will also. I do think it seems clear, and then it gets fuzzy. I know it's a deep area of science. Well, you and a few colleagues are working on a scoping review on the landscape of implementation science in communication sciences and disorders. Can you tell us a bit about what you did, what you found, and why this is important specifically for aphasia?   ND: Sure. Right. So, this is a project that I've been working on with some other colleagues. So, with Dr. Megan Schliep, Dr. Julie Firestein and Jen Oshita, and we're working on and again, we're, this is not published, so please take this with a with a grain of salt or 10. I mean, we tried to have good rigorous methods. So, we basically wanted to see because, you know, I, this, when I say this, like I, myself have wrote a lot of these papers. So, I'm like talking about myself, but we have a lot of talking about implementation science, and we have a lot of concept papers. And it's good, you know. We need to be talking about it. It's a new area. But we don't we wanted to know, where is the science, right? Like been we've been talking about it. So, the Journal of Speech Language and Hearing Research, they had a special issue in 2015. So that's like, you know, a few years ago now, the ASHA Foundation had an Implementation Science Summit in 2014. So, years are going by right? And so, we wanted to know, have these initiatives, you know, this discussion that we've been having has it resulted in any changes, right? Are we moving the needle when it comes to incorporating some of these methods into our clinical practice research? So, at this point, we ended up finding 82 studies that met our criteria. But what I think is really interesting for people with aphasia, is we did this communication sciences and disorders wide, so including all you know, pediatrics, adults, we did, you know, speech language pathology and audiology. We came up with 82 studies, but the, the patient population that was most represented, was aphasia. Out of all of those different, you know, potential patient populations. And I thought it was a really fascinating finding. You know, it makes me think that clinical practice, researchers in aphasia are really kind of on the cutting edge, you know, when it comes to studying how to get these best practices into typical settings. And I think it also means that in aphasia, we have a unique opportunity to move things down the implementation pipeline. So, like, we started, you know, you and I started talking a little bit about reach, right? So, it's like, how do we get something out? You know, get people doing it? Well another, you know, kind of further down that implementation pipeline would be an outcome such as sustainability, right? So, like, when there is no researcher in sight, right, like this clinical trial has ended years ago, how do we put mechanisms in place so that that intervention is still sustained right, within that own system? So I think in aphasia, we've got really, yeah, interesting opportunities to be able to look at some of these longer term outcomes. You know. Overall, like as a field, it seems like we're really, potentially overly relying on like training and education as an implementation strategy. And I think that can be, you know, a number of reasons that I'm speculating here but you know, most of us are trained from a behavioral education standpoint. So I think we're really comfortable, you know, in that realm, you know, in some of these other implementation strategies, I don't know that we really know about them or use them, you know, to this point. But I think, you know, overall, a lot of progress has been made. But of course, we have a lot of room for growth. But I think we have some really unique opportunities, especially in the aphasia world, which I think is very exciting. KS: Yeah, that is exciting. And I guess I'm feeling excited and proud and that kind of like ‘eek' as we are stretching ourselves and learning things about how we might move the science forward ultimately so we can help the people living with aphasia to live better lives or reach their goals or whatever it is that they are wanting to pursue. ND: Yes. Absolutely. KS: As you know, this podcast has a wide listener base with shared interests in aphasia. Researchers, clinicians, program managers, people living with aphasia, their care partners and family members. What are some steps that they can take to support implementation science? ND: I think that all of those people that you mentioned those different groups, so you've got researchers, clinicians, you know, program managers, administrators, people living with aphasia, and their families and friends, right? Every single group that you mentioned, right through an implementation lens, they are a stakeholder, an equal stakeholder, where their input engagement is not only valued, but also, I think, required, if we're going to have optimal implementations to support all the outcomes that we want, you know. And so, I think one of the biggest steps that we can all make, is kind of reaching across our silos are relationship silos, right? So, for a researcher reaching out to a clinician, if we're clinician reaching out to a researcher. We don't need to have these silos. Even though we might, we might say there's not a hierarchy with our mouths between researchers and clinicians. I think we kind of know that's not quite true, right? It's a thing that is maybe unspoken, but it can make people feel intimidated to reach out. But I think that, and it's not just clinicians and researchers, but also administrators, families, people living with aphasia, if we can all start to break down some of those silos. So, I think the project that you're involved in with Jackie Hinckley, the Project BRIDGE, is a really phenomenal example of that, where people are actively listening, and learning from another, you know. I think it's not just a nice thing to do, but there's data to support better implementation outcomes, if we do that kind of engagement work upfront. You know and something that I try to ask myself when we're having these types of discussions is who is missing? Right? Who was missing during these discussions? And how do we get them to the discussion? How do we get them to the table to discuss and to really, so that we can figure out what's important, and how do we reach across some of the boundaries that we have and start to have this conversation? KS: I'm envisioning a ‘talk with' instead of ‘about'.  ND: Absolutely. And you know, this is not…I see this as like a both a “both and” thing. And so, this is in no way minimizing or to the detriment of basic science work, right? Like, we're specifically talking about clinical practice research, which not everyone does, right? And we know that there's different stages. But this is kind of a “both and” right”? We need our basic scientists and we need that foundational level work, we do. But I think there's enough data in that research to practice gap to say that we need to start way earlier in terms of, you know, kind of start thinking about, if I'm a clinical practice researcher, and my intervention requires a certain amount of time. You know, so if it's like time per week, you know, in minutes or in days per week. And I know for sure that Medicare is only going to reimburse three times per week, right? Then it's like, okay, that's something that's so much easier dealt with upfront, right? And so I think this can allow us this lens can allow us to be a part of some of these policy discussions when it comes to third party payers and to say, “Hey, guess what, this treatment didn't work, when you only did it four times a week, you need to do it five” right? Or whatever the case may be, but to have to be thinking about the different layers. And I it's a lot to think about, right? It's a lot to think about. As opposed to, you know, getting this amazing level of evidence on a treatment, but then understanding that it potentially is not going to be feasible or acceptable in a real-life setting. Sometimes you can't fix that gap. You know, sometimes it might be a little bit too late, you know, so I think the more we can be thinking about that upfront, the better. KS: Yeah, I love it. I'm visualizing sitting around with our implementation lenses on with stakeholders at the table from all walks of life and moving things forward. Oh wow. I've got goosebumps, Natalie. ND: You do.  KS: I do. You are putting the challenge out. That's for sure. I'd love to switch gears a bit and talk about another recent publication of yours. You and Ellen Hickey have recently co-authored a book titled Person Centered Care and Communication Intervention for Dementia: A Case Study Approach. What was the inspiration for the book?  ND: Sure, yes. So, thanks for bringing that up and letting us talk about that, to appreciate that. So Ellen, and I were, you know, we were thinking, as you know, clinical researchers, and we both of us had spent, you know, several years in clinical settings, we were trying to make it easier for clinicians who wanted to implement Person Centered Care, kind of across the care continuum. And from what we could find, you know, there were a lot of outstanding resources available about certain techniques. So, you know, external memory aids, or maybe the Montessori philosophy, or spaced retrieval. But what we wanted to do was put everything in one place, if possible, with a real kind of focus on treatment, and emphasis on the person. So, one thing that we thought was exciting, was we went so far as to name each chapter after a person and their role in life.    KS: You sure did, I love it!   ND: As opposed to, you know, this is a chapter about vascular dementia. This is a chapter about aphasia, you know, but again, this is a “both and” situation, you know, we need to have that detailed information.    KS: You made that message loud and clear. Person centered, loud and clear.    ND: For sure, for sure. So, for every case, there's eight cases in there. For every case, we really dive in deep on what it would look like to do, you know, a person centered assessment, and then provide some kind of flexible templates and some gold banks, you know, we're hoping that it will give, you know, very bright clinicians, you know, who are already doing great work, more ideas. You know, and by seeing clearly, not every person is going to remotely resemble these eight cases in this book, but we hope that by showing and focusing on a lot of the nuance, it will help spark some more person-centered programming for some of our clients kind of across the Health care continuum.   KS: Thank you. It's fabulous. When I was reading the book, I noticed prominent in the chapters, you've adapted the Life Participation Approach to Aphasia and the Living with Aphasia: Framework for Outcome Measurement, a.k.a. the A-FROM, to working with people with dementia. You know Aphasia Access' work is so centered around LPAA or Life Participation Approach. I love how you are expanding this vision. Can you share how this came to be?   ND: Sure, sure. So, Ellen and I had both used the A-FROM in our clinical work and it really made sense to us that when we think about some of those layers. You know, you've got issues of, at the impairment level, if that's cognitive or language, you've got issues to consider around the environment, life participation and personal identity, right? We felt that these factors were really relevant across disorder types and that this could be a very helpful way to ground some of the interventions and planning for intervention, as well as look at some of the outcomes. So, the Aphasia Institute was generous enough to allow us to use that model, you know, in the book, and we just, you know, merely suggest. It's not been tested or anything, but we just suggested it might be appropriate for people living with dementia as well. You know? And I know that we've got a segment of our population with frontotemporal lobar dementia, you know, or with primary progressive aphasia variants, potentially, so I think sometimes it's good to think about some overlap across disorder types, you know, in terms of how we want to ground intervention and outcomes, right? Because when we're thinking about people with dementia, and aphasia, really, we have to think beyond the impairment not to exclude the impairment. And, you know, we're not doing that, but just to think, to add some layers to what we might want to measure, and what we might expect to see some changes in.   KS: Well I think it's fabulous. I wish people could see, but I'm actually holding the book in my hands as we speak. It's the right size.   ND: It's pretty skinny! (laughter)   KS: Yeah, the right size. (laughter) But seriously, I'd love to dig into one of the cases. In particularly, I'd like to talk about Sam, the Bocce Player who was inspired by your own grandpa. And I'm looking at the chapter and I see photos of your grandpa and our grandma and your children…and I mean Natalie, let's talk about Sam.    ND: So Sam is my grandpa, he is no longer with us. And he was just the most unique, hilarious, funny, just complete character. He was all about his Italian heritage. And, you know, it was extremely sad for him to struggle with a communication disorder towards the end of his life. And it was just really difficult to watch and see, of course. It was devastating. You know, that's why we're all here in this field, right? But the reason that I…there were multiple reasons I wanted definitely a way to remember and honor him. I'm very grateful for the time that we had together but he is definitely one who did and would like he would be the person who you would go into their medical room, if it was rehab or hospital and with the “usual tactics”, it would be a “patient refused” [scenario]. There's just like, no way that he would attend to activities like workbooks or, you know, traditional speech and language tasks. I mean, it just would not happen. And he would refuse things all the time. He was like super stubborn, but the things that he loved, you know, he loved. And I think he is somebody, that's a really great example of sometimes if we go in and we're not knowledgeable of the person, we could lose our opportunity to try to facilitate communication with somebody. So, what we have in the chapter and in real life, you know, really kind of focusing on passions, so he was able to be around my kids when they were smaller, his Italian heritage, and Bocce and food, you know. And using those things in kind of a nontraditional setting, we were able to have some really special moments of what I think were very joyful, participatory, person-centered moments. If we kind of went about it in traditional, you know, from a medical model, I just don't think that would be have been very impactful. So, the hope is that for those folks that we see that they're like “Get out of my room!” you know. We've all been involved and told to ‘get out!'.    KS: “You're fired!”   ND: “You're fired! Why are you here?” You know, trying to think creatively about what that might look like to support somebody's communication.  KS: Absolutely. And I think the way the chapter is set up, how we first learn about Sam's background, and his family, and job, and then we learn about the medical history. I know that's not how we always come across information when we're meeting clients, or patients, or people. Whatever we are calling them in the places that we are working, but I do think it influences how we view one another. You know. And being able to think about our clients as people. And how we might engage with them. This is fabulous. One of the things that I thought, you know I love to cook, Natalie.   ND: Yes, you do.   KS: You talk about Sam and his sauce throughout the entire chapter. And I'm guessing you aren't the one who isn't going to be the one to help me learn how to make the sauce, are you?   ND: I know. That's so terrible. When I was a kid, he owned a restaurant and on Tuesdays he would take me in there and we would make the sauce for the restaurant. And so, he would show me how to do it, and I basically just stirred it. And unfortunately, that's the only detail other than the love... I can't give you details about the sauce itself. And as you know, that's really not my jam at this point, but, you know.     KS: I guess as I was reading Sam's case, as well as all of the others, I just feel like you and Ellen have done such a beautiful job of bringing this very ‘person-first'. I could really see how I could adapt some of these ideas, assessments, and treatment strategies that you've put into the book, even if I didn't have someone exactly like Sam that I could implement them with. So, thank you. Thank you.    ND: Thank you.   KS: As we wrap up, do you have any final thoughts you'd like to share with our listeners?   ND: I again want to express my true, deep gratitude for chatting with you today and for the generous and forward-thinking community of Aphasia Access, truly a game changer for the field. If anyone is interested chatting more about implementation, I hope you reach out to me. I'm always more than happy to talk and brainstorm about ways that we can move this forward. There's also an Implementation Science and Aging Special Interest Group that's free to join. It's interdisciplinary with some people in mental health, nursing, social work. It's all people across disciplines who are interested in who are interested in merging the worlds of aging and implementation science, I can give you that info to put in the show-notes.    KS: Sounds great! We'll add that and your Twitter handle and website for Practical Implementation Collaborative to the show notes. Natalie, thank you for taking time to share your story and work with us. Congratulations again on the Tavistock Scholar Award.    ND: Thank you so much, Katie.    On behalf of Aphasia Access, we thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org If you have an idea for a future podcast topic email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.   Connect with Natalie Online Practical Implementation Collaborative  https://www.practicalimplementation.org/ Natalie Douglas on Twitter   @Nat_Douglas    Links Mentioned in Episode Implementation Science & Aging Research Special Interest Group  https://www.isarsig.org/  Project BRIDGE – Stakeholder Engaged Research www.projectbridge.online    Read More In-depth Bauer, M. S., Damschroder, L., Hagedorn, H., Smith, J., & Kilbourne, A. M. (2015). An introduction to implementation science for the non-specialist. BMC psychology, 3(1), 1-12. https://doi.org/10.1186/s40359-015-0089-9 Douglas, N.F. & Burshnic, V.L. (2019). Implementation science: tackling the research to practice gap in communication sciences and disorders. Perspectives of the ASHA Special Interest Groups, https://doi.org/10.1044/2018_PERS-ST-2018-0000  Hickey, E. M., & Douglas, N. F. (2021). Person-Centered Memory and Communication Interventions for Dementia: A Case Study Approach. Plural Publishing. https://www.pluralpublishing.com/publications/person-centered-memory-and-communication-interventions-for-dementia-a-case-study-approach  Schliep, M. E., Alonzo, C. N., & Morris, M. A. (2017). Beyond RCTs: innovations in research design and methods to advance implementation science. Evidence-Based Communication Assessment and Intervention, 11(3-4), 82-98. https://doi.org/10.1080/17489539.2017.1394807

Ellen Bernstein-Ellis, co-director of the aphasia treatment program at Cal State East Bay in the department of Speech, Language and Hearing Sciences and the 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 with Angie Cauthorn and Avi Golden. In honor of National Aphasia Awareness month, we'll be featuring these two stroke survivors who are very engaged in aphasia advocacy.  Guest: Avi Golden   Avi Golden was a practicing EMT and former critical care and flight paramedic with Northwell EMS and New York Presbyterian EMS. Avi holds a Bachelor of Science in Biology and has extensive experience as a practicing paramedic, both in the US and with Magen David Adom in Israel. After experiencing a stroke in 2007 with resulting aphasia, Avi now is a volunteer EMS. He actively partners with speech pathologists to educate the medical and lay community and is an active advocate for aphasia awareness. Guest: Angie Cauthorn   Angelique Cauthorn, better known as “Angie,” is the proud wife of Charles Cauthorn. They live in Moorestown, NJ along with their cat Tigger. Prior to her stroke, her jobs included a national top selling manager of Radio Shack, a mortgage banker, and at the time of her stroke in 2017, the finance manager of one of the largest car dealers in the country. Pre-stroke, Angie was on the Board of the Eleone Dance Theatre for 15 years as well as a youth leader and basketball coach. Angie was a panelist at the Aphasia Access 2021 Leadership Summit. She is now an ardent aphasia advocate and is co-founder of the newly formed Aphasia Resource Collaboration Hub (ARCH). ARCH is working to become a clearing house for available aphasia resources and services in South Jersey, Philadelphia, and Delaware areas. Listener Take-aways In today's episode you will: Learn why it's important to provide aphasia education and communication partner training to EMS students and providers Learn the benefits of engaging in disability sports for individuals with aphasia as a means of strengthening social connections and creating opportunities for fun.  Understand the value of having updated flyers in your waiting room or on your office bulletin board Learn about the plans for the Aphasia Resource Collaboration Hub (ARCH) and how the organization hopes to connect stroke survivors, their families, and researchers. Edited show notes. This transcript reflects the guests' original responses as a way to acknowledge and honor their ability to be highly effective and gifted communicators even when facing word finding challenges due to their aphasia. Interviewer: Ellen Bernstein-Ellis Avi, welcome to the podcast. We've had fun just trying to get everything to work today. And you've been laughing a lot already. I know it will be fun to interview you today.  Avi Golden: Thank you very much. And you too as well. So we'd like to start with an opening question. Is there an aphasia mentor that you want to give a shout out to? Avi Golden: So for me, again, for me, the speech, a speech pathologist works with me together every day and I love it. I work all the time. I laugh, but very good, but also, I speak with a speech pathologist together talking about aphasia with EMS or police or hospital around the world. And I want to say I forget the name, the guy, the girl, the girl the Karen. Not Karen. The one that we talked about earlier, Kaitlin Brooks? Is that right?  Avi Golden: Yes. She and I spoke many times, many times, with EMS or hospitals. And Kaitlin is amazing.  You just gave a hats off to speech pathologists in general because you're still working hard on your communication, but you also now have a different role where you're partnering and presenting together all the time, and that's part of what we're going to talk about today. So, thank you.  Avi, you had your stroke in 2007. And it was following surgery for mitral valve prolapse. Maybe we could start with what you were doing before your stroke. Would you like to provide our listeners with a little personal background?  Avi Golden: Sure. 4, 5, 6, 7, 8 years I was a nor-uh, paramedic in Columbia Presbyterian and North Shore and a lot of part time at EMS. And then later I was riding for critical care and flight paramedic as well. And I was going to go to medical school. But first, I had, my father, who is a radio- he was a radiologist and he, he has a, he is, he was going to surgery twice to have a mitral valve prolapse. So I have a hereditary, is hereditary. So I have prolapse. So I say l, you know what, before medical school, I want to go to surgery and then go to medical school. Okay? Unfortunately, in the surgery, I have a stroke resulting in aphasia. Okay, and Abi, what was your communication? Like right after your stroke?  Avi Golden: Sorry, sorry, I'm not laughing at all. I'm crying no--. It's funny, Is for basically one year, again, everybody is different. That's my number one. But for me, basically, one year, all I could say was “Michael” l, and I have no idea who Michael is. I mean, maybe my roommate, maybe my cousin? I don't know. But so everybody's like, who is Michael? I'd say, “Michael, Michael, Michael” So yeah but... You're laughing, maybe at the memory of how surprised people were? You're shaking your head. You would come out with “Michael, Michael, Michael” and people would try to make meaning out of that. And you didn't really have meaning for that.  I can already see the teacher in you. Because you're already starting off by saying, “Okay, I'm going to speak for me because everybody's different.” You recognize right away that there's not one rule or one description. Yes, you're shaking your head in agreement.  What was the adjustment process like for you? You said that for a long time, you wondered about going back to medical school, but then you told me when we talked last week, that you had three things that you thought about doing. You started to prioritize and adjust to what was going to be next for you. Do you want to share what that was?  Avi Golden: So in my head, swear, I swear, I want to go to medical school. So I am working with a speech pathologist together every day, working to try to speak, not, not normally but is getting better. And reading and writing, listening. And so (??) but also, I am teaching with a speech pathologist together, talking about aphasia with doctors, nurses, EMS, etc. And number three, for me, is disability sports. Before, sports, a lot of sports, like (??) well, I don't like it, but hiking or skydiving, and it's the same thing for disability. That's gonna be our focus today is to talk a little bit about your EMS training and disability sports. And we'll start with your EMS and aphasia advocacy first. And as we've already figured out, I probably need a whole episode just for you. And I'm going to feel the same way about Angie when we talk.  How did you start as a public speaker and teacher about aphasia? You shared with me that you walked into the National Aphasia Association office (NAA) in New York. Can you tell me about that first encounter? Avi Golden: So NAA was in New York City. Now it's, unfortunately, Virginia. But I, I was, like, six months after the stroke. So I walk in the office, and I say, “Michael, Mike, Michael.”  And the guy, the girl, is like, “Thank you. Thank you. I understand, but who are you?” And I say, “I'm Avi Golden, Michael.” And then I will walk out because I'm, I'm, is like, angry. But later on, so Elaine Ganzfried, who, who was a President. Yes, the  Executive Director, that's right. Avi Golden: Yeah. So she come back. like, one or two months later, and she said, “You know, I speak, I am speaking with people with aphasia, about aphasia, with doctors or nurses or PA or EMS. Do you like to come and speak about your story? And I say, “Awesome. Michael, Michael. Yes. Awesome.” And that's the first time.   Wow, Avi, you're so comfortable. I've been joking that you've been as cool as a cucumber and I'm nervous. I'm more nervous than you about this interview. And you look just so calm. And you've been patient.  I've dropped the microphone a few times, and you've been great.  Avi Golden: But it's twice, not three or four times. So that's good.  Thanks, Avi, you're keeping count. So hopefully, we'll have a fun interview because you are picking up on all the humor. But I was going to ask you if you were a public speaker before your stroke?  Avi Golden: No, not at all. Well, I mean, before the stroke, I was a paramedic. So you weren't going around giving speeches. Okay, thinking back on that first time you walked into the National Aphasia Association office and said, “Michael, Michael, Michael” as you told me, to now, how many speeches have you given over the past 10 years?  Avi Golden: I will say, I don't know. It's a lot. So I, I speak with EMS, police, firemen, hospital, around the world, because it's Zoom now, but also people with a disability, kids, etc.  So, would you estimate more than 50 speeches in the last 10 years?   Avi Golden: Yeah,  More than 100 maybe? Avi Golden: I don't know, maybe one week or two weeks, every day, every month, every week, one to-- One to two speeches a week?   Avi Golden: All the time.  That's a lot of speeches over the 10 years. We'll put your contact information in the show notes. And we'll keep you busy. Avi, you've built a beautiful PowerPoint with lots of photos to help share your story. How do you typically prepare for a presentation?  Avi Golden: So before? I mean, after the stroke? So three years, I don't have a PowerPoint, so I speak for like two or three days, uh three or four, two or three minutes. And that's it.  And then, in my head, it says, “You know what? I have a PowerPoint.” So, I can have a PowerPoint. And then, number one, you, they have, see, what's going on? And also, I understand. I know that it's more before in my head. I know, but then, I also don't know, later, until later on, and, but the EMS are shut down. Do you understand?  No, I lost that last part.   Avi Golden: I speak with three, three or four minutes, but I don't, I... rarely, I don't know, is, after with the PowerPoint, I have a list of stuff. And I look at the list. And I say, “Oh yeah, I forgot.” But then, I remember because, I, yeah... So it's like not having to have notes or a script because the PowerPoint is leading you through the story. And that serves as a way to help guide you.  Avi Golden: Correct And also illustrate things if you do have a moment where it's hard for you to come up with that word. Yeah? Avi Golden: (Laughter) Okay, I know that too. Thank you. So, you and I talked about wanting to use that PowerPoint for our interview. But since this is a podcast, we don't have visual support. And I really want to thank you for still being willing to have this discussion even though we can't provide that to our audience. But that's how you typically go through your presentations is by using the visual support as a visual script. That's become a really good tool for you. Do you have advice for anyone who wants to start being an aphasia ambassador and public speaker like you? What would you advise? Avi Golden: So, number one, I, um, a lot of people who has aphasia, speak with me together with EMT um Speech pathology students or OT students, etc. So, they speak about their stories. So that's number one. They have a PowerPoint. So, it's number two. And number three, please, please come either talk with about one or don't talk, but speak about their, your story. So, number one, please work with a speech pathology because it's amazing. So nice. So brilliant. People, people with speech pathology work with me, Work with them, and it's wonderful. Laughing hysterically but working all the time. But also, people who have a disability please come and speak about their, uh my, uh your story. You were hoping that I would invite more people onto this panel. I said that we will never be able to tell everybody's story (in 30 minutes). But you so firmly believe in collaborating and the strength in having multiple voices. That seems to be a really impactful approach for you.  Avi Golden: Yeah. Yeah. Absolutely. And that you like to collaborate with the speech language pathologist.  Avi Golden: People with aphasia as well.  Yes, absolutely. Speech pathologists, people with aphasia, and you form a team, a partnership. And you said you like living in New York because there's so many resources, right?  You were listing all the wonderful places you go-- Adler, Teachers College... Avi Golden: NYU, Mona Greenville is speech pathology, so she, I go twice a week, I go twice a week, but other people is three times a week. So it's Mona and the students. So, it's one, one versus one for one hour, working, and then three or four hours, a group together, and have a good time speaking, reading, listening to jazz, you know, stuff like that. So it's very, very cool. I noticed that you have quite a presence on social media. And that's part of how I got to meet you and see that you were just all over, going to different places and participating in a lot of different activities.  Given your connection to EMS as a paramedic, let's focus on that for a moment. What do you want to make sure that a new EMS responder understands about aphasia? You go to schools, EMS training programs, and you're trying to help new EMS students or future EMS providers to understand aphasia.  What do they need to know?  Avi Golden: So I call or I email all the time, every day, like three or four, three or four different websites or even uh websites or people. And I ask them, I say, “I have, I have a stroke so it's hard to communicate. But before I was a paramedic in New York City, and then unfortunately, I have a stroke and aphasia. I was wondering whether it is okay to speak, or now Zoom about aphasia with EMS or hospitals with a speech pathologist all together.”  And about half of them don't go or don't call me. That's okay. And half of them say, “Yes, please come and teach them about aphasia.” Is there something particular that you want EMS, the new paramedic to learn? Because you actually pointed out to me how little information is shared with EMS during training by the textbook itself? You said it's like a 1000-page textbook, and what's the problem? (Avi holds up four fingers) That's four, four what?  You're holding up your hand, four?   Avi Golden: Four words, four words. About aphasia?  Avi Golden: Yeah. So before, before, also, I was reading a lot is, you know, 1000 pages, whatever. And I have is, aphasia is small and saying, “They speak not normally.” So, it's like, I don't know, whatever. It's, it's so small, who cares? You know, I don't do it. I have to go to hospital, I go to, I am going to ambulance to ride with a heart attack or trauma, whatever. So, no problem.  But then after the stroke, and aphasia, I went to the textbook, the same textbook, and I read aphasia, and it's four words. And I say that (high pitch voice) it's only four words, in my head, With your fingers you're showing me teeny tiny, just teeny tiny. I will share that our next guest is going to talk about part of her story that was really frustrating to her--something that the EMS responder said to her at her stroke. I don't want to spoil her story now, but it just went to show that that EMS provider must have not been to one of your speeches because he really didn't seem to understand the aphasia.  Have you been asked any surprising questions by any of your EMS audience?  Avi Golden: One or two times? Yeah, I don't remember, They get interested and they get engaged and you put a real face on what it means to have aphasia and share your experience. Avi Golden: I mean, thank God for you, or EMS. But for me, I'm still, still, not crying but I'm saying, “I want to go to medical school, I want to go to medical school.”  but I'm still speaking, so that's, so that's good for me. You do a lot of your aphasia advocacy with EMS because that is your peer group, that was your passion, and you have a strong connection, and they understand that you know their work really well.  And you also go out to medical schools and to speech pathology schools and occupational schools and help people go beyond that two or three lines in the textbook, right? I think it's incredibly important work. So, thank you for continuing to do that. And if you think about the many hundreds of presentations you've done, it's having an impact.  So I'm going to transition from your life as a public speaker advocate, and ask you to talk a little bit about your involvement with disability sports.  Avi Golden: Awesome. Okay. So again, before I was, it's called, it's called Jewish Outdoor Club.  Is a lot of people who hike or also like skydiving or scuba diving or small things. So I hike as well together. And then I have a stroke, and aphasia. So I, so, I went to, oh, so, I was in hospital. And I saw the flyer says disability gliding. I said, “What is that?” So I went to the website, and I see is climbing. I said, “Oh, my God it's disability sport, disability people, disability sport, disability.” And I, and I say, “Oh, and it's right down the road.” So I am driving, I was driving, and I went to the plane and sailing with a pilot. And it's like, oh, my God, and it's disability. That's crazy. I love that you brought up that you saw a flyer. Our next speaker, Angie, is also going to share that she saw a flyer and that led her to a really important place. I guess that the lesson is that the resources that we have available in the office or in the waiting room, you never know what people are going to see. And we need to keep those resources fresh and available.  So you started the Facebook page that you manage called NYC Outdoors Disability, and we'll put the link in the show notes. How did you start organizing outings?  Avi Golden: Now for me, but I live in New York City. So, a lot of, a lot of EMS, sports, like for example, Burke Rehab or Helen Hayes Hospital or Leap of Faith is a disability sport. In the summer water sports and winter skis, you know, and stuff like that. And I, I go and having good time with different sports. And then I say, I ... I, I email, I Facebook with a lot of different disability. But I also speak about, please come with a lot of sports.  So, this isn't just for people with aphasia. You're saying it's for people with all different kinds of disabilities.  But do they seem to understand aphasia when you come or do you have to teach them sometimes? Avi Golden: I don't care, you know. You're not worried about it. You know that you'll deal with it when you're there. Avi Golden: Exactly. (Laughter) Okay. All right. Avi Golden: And I, and I say, you know, before I was a paramedic, but then I have a stroke and aphasia, so it's hard to communicate. Don't worry, it's all good. I understand. So let's go. Okay. And it's like, Alright, let's go and then all right. So it sounds like your Facebook pages are really a clearinghouse in a way. You're keeping the pulse on what new and exciting activity might be happening. And then you post it on your page to encourage other people just to come try it. Avi Golden: That's it. That's it right there. Ah, so you're not sponsoring these trips, but rather you're getting the word out. You're kind of giving people free PR.  Avi Golden: And I'd say just come one time, just one time. Come and just try it. Because first of all, it's free. Disability sport is either cheap or free, I swear, free. And number two, you can try and have a good time. So you know. So you're just trying to get people to engage in activities that will be fun. And to show them that there are things that maybe they thought they couldn't do because of their stroke, but they can do because there's all sorts of efforts being made to adapt, accommodate, and make it happen. Avi Golden: Yes. And also, I have a lot of magazine called, is a lot of magazines. And in the magazine, is either magazine about people with disability, or sports. So, you can go to a website and look for disability sports. And you can see a lot of more things to do for either me. So, you're saying that if you're not in New York, because you're mostly posting the things that are in your area, which makes sense. So you're telling me that if you're not in New York, and someone's listening to this, they should go and Google ‘disability sports' in their area, and they're likely to start seeing activities come up.  Avi Golden: Also, unfortunately, it's big cities. But small city, I'm sorry, it's hard. It's hard is walking, uh is driving. But for me, I drove all the time, because I like driving as well, but driving for two or three hours, because it's fun. But that's me. The thing that strikes me is that you've decided to try to become an educator, because that's meaningful to you. It's challenging for you to practice your communication and you enjoy that. And you enjoy the collaboration and connection with the people you're talking to. It seems like you really enjoy talking to students and to new EMS responders and spreading the word about aphasia.  And then you also find the reward in disability sports because you're just trying to stay active. And we know that the incidence of depression and the sense of isolation is really high in aphasia.  Avi Golden: No, absolutely. Absolutely. And it's so sad. I mean, it's not sad. It's, it's, it's so... I, I say also, also, there, I say, please, I know...I know, it's hard to communicate, and a lot of people, even for me, I, in the beginning, I cried for two weeks, but then I fight because in my head I said, “I want to fight with, I want to go to medical school.” That's my head, my story. But other people, says... in my head, their head, let's go fighting, fighting, fighting.  But a lot of people also is depression. And it's so sad. So, I am speaking about depression and say, please come try a lot of things to do-- sports, hiking, working, cooking, whatever you want, but just try, well are more and more  We know that exercise alone can elevate mood. So that's the bonus with activity like exercise-related activity. And number two, we know that having something meaningful to do, a meaningful activity also tends to help with depression. So, you get a twofer here-- disability sports are really amazing.  So I knew this time would fly by I knew this would happen. But I've really enjoyed it. I will ask you one last question. Oh, go ahead. Go ahead.  Avi Golden: The No Barrier Summit. I swear. Sorry.  You want to bring that up? Okay. So, tell us why do you like The No Barrier Summit so much?  What so, so, so three times, every year in the summer, is disability sports, No Barrier Summit is a disability sports or wounded warriors or kids, whatever. So, in the morning, skiing, scubbaing, hiking, whatever you want, it's fine is really good. But in the evening, people who have disability speak about their story. And it's, it is so powerful because everybody is like, Oh my god, really! You hike. You do it, you, you have blinded, you and you do it or, or scuba lessons, or whatever. Everybody is like holy crap. It's amazing.  So you are inspired by what people are able to do. And you think why can't I do it too? Maybe, is that... Avi Golden: Yeah, and I am, and I am now speaking as well. Speaking and also schools, not school, sports. Also too. Have a good time.  So that's really been motivating for you.  Avi Golden: Yeah, yeah. I will look for that link and put it in the show notes too.   Avi, what, what would you say are the most valuable lessons that you have learned as an aphasia advocate? Do you have anything final you want to go out with? Avi Golden:  Basically...uh..fight, work, working with aphasia. That's number one. Number two, remembering that, in my head, I want to do it. Whatever you want, Meaning, fight, fight, learn, and then have a good time. Three lessons: fight, learn and have a good time. Thank you, Avi. I've had a wonderful time with this interview and getting to know you more than just seeing you in different places on Facebook and waving to you at conferences. So this has been a delight. Thank you so so much. Avi Golden: Not a problem at all, please.  Okay. Hopefully we'll have you back in the future. We just hit the tip of the iceberg today. So, thank you so much,  Avi Golden: Not a problem. My pleasure.  I'm really excited to introduce our next guest, Angelique Cauthorn better known as Angie, she is the proud wife of Charles Cauthorn. And they live in Morristown, New Jersey along with their cat Tigger. And that's a gorgeous cat that you're petting right now I can see on Zoom. Beautiful!  Prior to Angie stroke, her jobs included a national top selling manager of Radio Shack, a mortgage banker, and at the time of her stroke in 2017, the finance manager of one of the largest car dealers in the country, pre stroke, Angie was on the board of the Eleone Dance Theatre for 15 years, as well as youth leader and basketball coach. Angie was a panelist at the aphasia access 2021 Leadership Summit, and she is now an ardent aphasia advocate and his co-founder of the newly formed Aphasia Resource Collaboration Hub (ARCH). ARCH is working to become a clearinghouse for available aphasia resources and services in South Jersey, Philadelphia and the Delaware areas.  Angie, thanks for helping me with the name of that dance company, which I know has a very special place in your heart. Angie Cauthorn: Yes. It was founded by my brother, Leon Evans, in 1992. So, thank you for making sure I said that correctly.  I am just going to start with my first question for you, which is, how did you end up being a panelist for Aphasia Access at the Leadership Summit? I am so, so grateful that you said yes, when we invited you to come be a guest today. Thank you. Angie Cauthorn: Thank you so, so much for having me. Thank you for that wonderful introduction. As for the leadership summit, Dr. Gayle DeDe of Temple University called and asked me to be part of the summit. Because of the pandemic, I had done some online work with some very young, talented people. And I was asked to give my, my opinion on some tricks and tips that I had learned, and my general feelings about receiving therapy online. And I was happy to lend myself and my time when I was asked. You mentioned tips, and you gave us all a tip about passwords when you did your presentation to the Aphasia Access Leadership Summit. Would you share with our listeners today? What was your tip about passwords when you're on Zoom if you're working with people with aphasia? Angie Cauthorn: Well, what everything is, when you send the link it, you know, you can just click the link, but sometimes it asks you to prepare a password for security reasons. But that, remember you're dealing with people with aphasia and numbers can be very confusing. And they can cause an additional barrier to someone maybe joining your group session or your private session. So just be mindful of the passwords that you use and try to use something that's aphasia friendly.  I think that's a really important tip because you don't want that password to be the first barrier before they even start. Angie Cauthorn: Before they even start. Then they're coming in with kind of a down feeling. It's just again, showing people what they can't do, rather than how they can participate. And Angie, we were so glad to hear your message at the Aphasia Access Leadership Summit. I was wondering what did you, as a consumer, get out of being at the summit?  Angie Cauthorn: Well, I was at the summit and I was on a panel with Dr. Charles Ellis, which is the one where I gave the tip and then I did a presentation. But I stayed the whole week. And I was literally inspired by the people, the kindness, the generosity of the speech pathologists. The, it gave me a different idea of health care. Everyone was just, no one was really, there was no, I'm sorry. There were no panels on how they can get more money from Medicaid or Medicare or anything like that. It was all about how they can maximize people's health. And it was an absolutely, I want to say, loving experience. It was how everyone was concerned about how they could help a stranger get through a hard time in their lives. It was very refreshing. You know, I have to agree with you. I found it really refreshing and inspiring too as I listened to each and every panel, and poster.  It was really an inspiring conference for me too. Angie Cauthorn: So kind, so thoughtful, and just wanting to help. And that's what I really kind of took from it, how everyone was on the same page. It was really inspiring. Angie, your bio is a small window into what a busy and active and full life you had before your stroke. And you shared with me yesterday in the email that today's actually the fourth anniversary of that stroke. Angie Cauthorn: Today is the day. Yeah, yeah, it's, um, it's a little different. It's, um, it makes you a little melancholy, I guess, in a way, but also joyful, because you know, you're still here. The alternative is everybody doesn't make it through a stroke. And so, you have to celebrate that. Never mind what you can't do, the fact that you can do anything has to be celebrated. And keeping a positive attitude with it is very hard to do sometimes, but absolutely necessary. So, I am celebrating. But also, taking it all in, taking full account of everything, is always a good thing, as well. But, you know, the, these milestones that you hit um...are...a lot. They're very meaningful. And I think you're right, we learn in life how to both carry the grief and the joy and make sure that we acknowledge and understand that, that we can do both together.  Angie Cauthorn: Yes, yes. You must. You must.  So you shared that after a long day at work, four years ago, you were winding down, and you noticed you couldn't reach for a glass of water. And your speech sounded a little funny. So, you actually told your husband to call 911. Can you share your experience with the first responder? Angie Cauthorn: I most certainly can. The young men, two police officers and two paramedics, came in. And the young man didn't seem to have a good understanding of what was going on. He told me, I was having... a panic attack. And as much as I could muster in my little box of words that I was now working with. I said, “Son, I don't, I don't do panic attacks. I don't, I don't even know what that is. I promise you. I don't know what this is, but that's not it. And I need to get to the hospital.” And they were almost kind of, what is the word, indifferent on if I, if I needed to go or not. And I was like, “Yeah, please take me now.” I think that that story supports the work that Avi Golden, who was my other guest today, is doing by trying to raise aphasia awareness with EMS schools, EMS students, EMS responders. He wants them to have a better understanding of what aphasia means, how to communicate, and how to be a better partner in these situations. So, we're gonna give him a shout out for continuing to do that work because this is a story that reminds us why it's so important.  Angie Cauthorn: It's so important because if I would have said, oh, maybe I am having a panic attack, and maybe, maybe I would have went to bed. These are sometimes the stories that you hear, if somebody was having a stroke that they went and took a nap. That is so true. In fact, Angie, I will share that is what my mom did. She took a nap.   Angie Cauthorn: Yeah, because you don't know. Because when you don't lose consciousness. I did make it a point, as soon as things went a little to the left that night, I made it a point to try to acknowledge everything I was feeling. I made it a point to say, “Okay, stop. What can I feel? How does this feel? What's different?” And my hand, that was clo--, my right hand was cold to touch anything else. That was my biggest thing.   Alright, so just paying attention and knowing yourself. You knew that you needed to get to the hospital immediately.  Angie Cauthorn: Yeah.  Then you got to the hospital, and you needed your husband to help advocate for you there.  Angie Cauthorn: Because my language was disintegrating. It was just... not working. And so, I got my husband in the room with me. And I told him, “You have to go tell these doctors that I am... I'm smart.” Smart. You're smart. You want the doctors to know that. Angie Cauthorn: I want them to know I am smart. I am not on drugs. I don't know what this is. But I have to go to work in the morning, so we have to get this wrapped up. I was supposed to open the dealership that day. And I will mention, as a quick sidebar. I never made it to work. I still haven't been back. Instead of going to work, you spent three days in the hospital, you told me, then you were discharged home. I'm assuming next came therapy. Share with our listeners, how did you start to realize what you could or couldn't do? What was that process like?  Angie Cauthorn: It was trial and error. You don't know, when it comes down to aphasia, you don't know what you don't know until you're faced with it, until someone ask you. I didn't know I couldn't tie my shoe until I went to go tie my shoes. So, if I'm walking around in sandals for three months, I didn't realize that, oh, this is a problem. Writing my name, or the one I love is saying the alphabet. How often does, when was the last time you actually, Ellen, said the alphabet all the way through? Well, I'm a speech therapist so I do get to say it, but I know the point you're making. Yes. Angie Cauthorn: Right, nobody's, you know what I mean? So those things were very... telling to me. And it was just about trying to figure out and trying to navigate... what was missing. So, you started therapy.  I know you were working hard. Can you share how you found your first aphasia group? How did that happen? Angie Cauthorn: I was in my doctor's office. She had a flyer on the wall. It said... every first and third Tuesday, I think it was, and of course, that's, that's hard to kind of figure out with or without aphasia.  Okay, true, true.  Angie Cauthorn: You know, you're missing a lot. And so, my husband and I, we finally figured it out, which one we were going to go to, and he took off for work and he took me and it, I felt like I had come home. It was like a weight was lifted off of me. Because I found a community that was open, understood. And a place where my aphasia was a non-issue. So, we're, we're talking about the Adler Aphasia Center, right? I'm gonna give them a shout out. Angie Cauthorn: And you should. Why would you then recommend aphasia groups to other stroke survivors? What's your advice there? Sounds like it was a good place of connection for you. Angie Cauthorn: I would advise it for the friendship, for the validation, to be heard, and to more importantly, be listened to. And I'm not a, the person who is a group therapy Kumbaya person. That's not, that's just not my nature. But I have definitely...but it's been a godsend. It really has been a, such a huge help. And a lot of us are, you know, are more independent and this is, you don't know what you need until you find it in that particular instance. I didn't know that was something I needed or should have been looking forward to until I literally stumbled into it.  You also mentioned to me that you have a special place in your heart for Dr. Gayle DeDe's aphasia choir, and I'm also a very big aphasia choir advocate. What has that been like for you, participating in the choir? Angie Cauthorn: I'm just going to, first of all, let me just say, the Philadelphia PACT choir is probably the best choir of aphasia of all time. I'm just gonna go ahead, I'm gonna lay it out there. Dr. DeDe knows what I'm talking about. This is great. I love it. I love it. Well, you haven't heard my choir yet. But that's okay.  Angie Cauthorn: We should have like, a community...like uh.. A sing-off?  Angie Cauthorn: Yeah, a sing-off. Not that we're competitive, Angie!  Angie Cauthorn: No, no, no, just a friendly, let these cats know from Philly, Gayle DeDe takes it very seriously. No, she's such a genuine, she, first of all, she really does, with kindness and sincerity and a loving disposition, runs a tight ship. She is, she just wants to make sure everyone understands, everyone gets it. We don't move on until everyone is comfortable. We take votes on what we're going to sing to make sure that everyone is comfortable. It's just really, a really, a good time. And she really does an outstanding job of making it somewhere you want to be. It sounds like Adler Aphasia Center has been a place where you've made connections. The choir has been therapeutic and rewarding for you.  Now, four years later, you've become engaged in a special project, the Aphasia Resource Collaboration Hub, or ARCH for short. What is that budding nonprofit about?  Angie Cauthorn: ARCH is about being the landing pad for people with aphasia, the researchers, the clinicians, all of these different stakeholders to know and be made aware of the information that's available to for people with aphasia to be better. I was a, it kind of started with me having a very car..., I'm sorry..., a very…. conversation with Dr. Martin from Temple University. And she was telling me about all the resources that were available to me in this tri-state area. And it was a lot. And I wanted, we wanted to put a position, put ourselves in a position where there was one place where I could find out about all the research, clinicians can find out about the research, researchers can find people with aphasia, so we can do the research We wanted to find a way to kind of bridge the gaps, to fill in the gaps. So, people, it would be a smooth transition, and a smooth transfer of information. And that's really what ARCH is about.  So like a clearing house a place to help connect people who need the resources and people who want to give them resources.  Angie Cauthorn: Yes, exactly.  It's not as if you just accidentally stumble and happen to see a flyer posted on the wall behind you. You want to make it a much more intentional effort to connect people. Angie Cauthorn: Right!  Because aphasia is so... not well known. And I think that is one of the bigger issues. You know, if people have Parkinson's, you know what to do. You tell them you have aphasia. They want to know if you're contagious.  It's true. We know that only about 10% of the public even know the word aphasia, even though there's over two and a half million people in the United States with aphasia.  Angie Cauthorn: Yeah, right. You shouldn't have to say I have a stroke and I have brain damage. I should be able to say I have aphasia. There should be a level of recognition and that's what we have to be working on constantly. I started to say, it shouldn't just be flyers on the wall, but flyers on the wall are important because that's how you saw the notice about the aphasia group. So we need that. And we need these clearing houses that will build more bridges. So what's your short term goals for the next six months for this new organization? Angie Cauthorn: It is to advertise, get some funding lined up. And to advertise, advertise, advertise, and educate. And I say advertise. But I probably mean educate. But we have to tell the public about it. We have to secure... give ourselves the opportunity for people to know what's going on, and the people that have had aphasia, that have kind of fallen out of therapy, because with aphasia, sometimes you don't even realize it until by the time therapy is over, is around, in my opinion, the time that therapy should be starting. So they need more resources. When they're discharged, they need to continue this process of learning to live well with aphasia, as we say.  Angie Cauthorn: Right. and giving people a flyer when they leave the hospital, it just ends up on the dining table. You have to be able to reach them later. Because they may not be able to process everything that's being, all this paperwork. And there's something about aphasia in there. Okay, again, I can't tie my shoe. I have bigger problems right now. It gets lost.  So, we have to keep coming at it and keep making those connections again and again. Angie Cauthorn: Yeah, so, so important.  So what message would you like to share with speech language pathologists? What do we need to know when working with our clients? Angie, what's your take home? Angie Cauthorn: My take home would be to understand that your clients are still mid- avalanche when you see them, when you meet them. They are, you are reaching out your hand, telling them-- just grab my hand. And they hear you, but they can't reach you. And they don't really know what you're saying. You're just a person that they kind of, you're almost in their peripheral vision. Just know that and be patient with them, even when they're not patient with you.  Angie Cauthorn: And I one thing I can say I did get from the Leadership Summit, meeting all these speech pathologists, they are seemingly just innate with the kindness that is required. But just to say, again, be a little more deliberate with your patients. If you can, and just know that these, your patients, are... mid avalanche, and they have no idea how it's going to go down. So, your kindness is so important. I think that's a good reminder. And would you give a different message to your fellow stroke survivor after discharge from speech therapy? What would you tell that person? Angie Cauthorn: Be consistent with your therapy, do not deviate from what you were told to do? Go get math books. Work on that on your own time. One thing I did is, I made a playlist of all my favorite songs from my youth, and I would practice those songs.  That's an upbeat way to go at it.  Yeah, yeah, I did that. And I call it, it says “aphasia stuff”. That's what I call the playlist. And it might be, you know, just old rap songs from 1984. But those are songs that I knew I knew. I know, I know these songs, okay. And I would work on my verbiage in the mirror and just try to sing the songs.  What I love about that is aphasia is so different for every individual, but you found something that worked for you that was creative. And that, I hope, with all that good music, also made you feel a little bit better too.  Angie Cauthorn: It did, it did.  It's so important, so important.  I'm going to wrap-up with a long-term life goal for you, Angie, Something you shared with me-- that you wanted to give a TED talk. I think that's going to happen someday. Because I think if anybody should give a TED talk, it should be you. You have so many insights and such wonderful energy to share.  What would be your topic and what might be two or three points you'd want to make in that Ted Talk? Angie Cauthorn: Well, I think I would call it Lost in Translation, the Battle with Aphasia. I will talk about how it changes us, and all our relationships. I would also talk directly with the people with aphasia. And let them know, listen, it's going to be hard. It's going to be tough. And every, all your friends that you have now will not all make the journey with you. But a few will, and be consistent, be kind to yourself, have a positive attitude, and to call aphasia by its name. That would be, the, what I would, I would talk about if given the opportunity, I hope you will because that's a message that needs to get out. And that's the perfect message for today's episode, given that we are celebrating June as National Aphasia Awareness Month. So, thank you. Thank you so much for being my guest today. Angie, I could sit here and talk with you for the next hour. And we could, we might just turn off the record and keep talking. So thank you so much.  Let me just wrap this up and say thank you again for sharing your expertise, your insights, your knowledge with us, with our Aphasia Access members. Angie, I appreciate it so much.    References and Resources  Avi Golden NY Outdoors Disability https://www.facebook.com/groups/nycourdoorsdisability Leap of Faith Disability Sports https://www.lofadaptiveskiers.org/ No Barriers Summit 2020 https://www.nobarriers.live/ No Barriers https://nobarriersusa.org/experiences/ Angie Cauthorn Aphasia Resource Community Hub (ARCH) archresource@gmail.com Philadelphia Aphasia Community at Temple http://www.saffrancenter.com/p-a-c-t/ Aphasia Rehabilitation Research Lab--Temple University http://www.saffrancenter.com/about-us/aphasia-rehabilitation-research-lab/ Adler Aphasia Center https://adleraphasiacenter.org/

During this episode, Dr. Janet Patterson, Chief of Audiology & Speech-Language Pathology Service at the VA Northern California Health Care System, talks with Dr. Michael Biel about theories of motivation and their application and value in aphasia rehabilitation.  Guest Bio: Michael Biel is an Associate Professor in the Communication Disorders and Sciences department of California State University, Northridge and senior speech-language pathologist at UCLA Medical Center.  From 1993 to 2012, Michael was a full-time speech-language pathologist working in the Los Angeles and Pittsburgh VA healthcare systems.  Michael is board certified in neurologic communication disorders from the Academy of Neurologic Communication Disorders and Sciences and specializes in working with persons with aphasia. In today’s episode you will hear about: Self-Determination Theory, and Flow, and Aphasia rehabilitation Psychological nutrients of competency, autonomy, and relatedness, including a short list of actions one can take to satisfy these nutrients Intrinsic and extrinsic motivation, and therapeutic engagement as a process. Interview Transcript Dr. Janet Patterson:  Welcome to Aphasia Access Conversations. Today, I am delighted to be speaking with my dear friend, research partner, and pioneer in the study of engagement, motivation and aphasia. Dr. Michael Biel. Dr. Biel earned his master's degree in Communicative Disorders from California State University Northridge, and clinical doctorate degree in medical speech language pathology from the University of Pittsburgh. Mike dedicates much of his clinical practice and research efforts to understanding the science of motivation, and how to translate well established theories in the psychology literature to clinical practice and research in aphasia rehabilitation. He also has an interest in the role of the arts and humanities in adult neurorehabilitation, and with his wife, Francie Schwarz, started a book club for persons with aphasia. You can hear about that book club in Aphasia Access Podversation # 12, where Francie describes the aphasia book club within the Los Angeles Public Library System.  Before joining the faculty at CSUN, Dr. Biel worked as a speech-language pathologist for the VA Healthcare System, and the UCLA Medical Center. Mike is Board Certified in Neurologic Communication Disorders from the Academy of Neurologic Communication Disorders and Sciences or ANCDS.  Welcome, Mike. I am pleased to have a conversation with you today, and to turn the tables on you so to speak, as you are typically a podcast interviewer with ANCDS. Today you are our aphasia expert on motivation and engagement. Thank you for talking with me today about aphasia, rehabilitation, motivation, and engaging patients, family and clinicians in the treatment enterprise. Dr. Michael Biel: Great, thank you so much for having me. Janet: Mike, I would like to start our conversation by asking you about motivation, and how we might think about it as a concept in rehabilitation. People scatter their conversations with the word motivation, attributing all sorts of their actions and reactions to motivation or the lack thereof. Knowing that this is a vast topic, can you help our listeners develop a frame of reference for thinking about how motivation fits into aphasia rehabilitation? Mike: Well, Janet, you're right. Motivation is a broad term. I think one author said that motivation is the why behind all human behavior. Some years ago, a paper was published, exploring the definition of motivation, and I think the author catalogued something like 200 different definitions. In its simplest form, I think we could say that motivation is the energy that causes us to do something, to act. Typically, whether motivation is effective, the many theories of motivation, are regarding its strength. The stronger the motivation, the more someone's going to pursue their goals and, and persist. Another way to think about motivation, one that I've kind of subscribed to comes from Self-determination Theory, and they focus more on the quality of motivation. They acknowledge that the strength is important, but they argue that more than the strength the quality is important and in its simplest terms, they define motivation as being either intrinsic or extrinsic. Intrinsic motivation is motivation where we're moved to act, because the activity itself is enjoyable, interesting, or satisfying. When people play video games that would probably be an example of intrinsic motivation. I use the example of going dancing, right, we dance because we'd like to dance not because we're expecting some kind of outcome after we're done. And so, if we are expecting an outcome, or if we have a goal in mind, then that would be considered extrinsic motivation. When I teach my students about motivation, they are in some ways, very tied to this notion that intrinsic motivation is good, an extrinsic motivation is bad. Extrinsic motivation is not necessarily bad. Much of adult life is characterized by us having to do things that we don't always enjoy. But if we're working towards a valued goal, and we're doing something because we desire to achieve that goal, then we're in a positive state of motivation, I guess you could say. Self-determination Theory divides extrinsic motivation into controlled and autonomous forms. In controlled forms of motivation, we’re acting out of some pressure to act. That can be due to some external threat, such as the client in acute rehab, who's told that if they don't participate, more, there'll be discharged, or even the pressure to secure a reward. And in this case, the care and the positive regard of a health care provider. Even we can put pressure on ourselves, wherein we have this “should” voice in our head. In Self-Determination Theory, this is thought of as some recommendation, or belief or value or goal that's been internalized, but to a shallow degree. In a better way of saying it, the authentic self is not really integrated and identified with this goal, and so it simply remains kind of a “should” voice in our head. Janet: That's fascinating, all the ways to think about motivation, several different perspectives. As I was listening to you, I was thinking about all of them, or at least, most, I think, have in common, that you're motivated to engage in something behavior, whether it's intrinsically motivated, or extrinsically motivated. But let me ask you a little bit about motivation from the perspective of engagement in the rehab process, because you mentioned that as an example of using motivation to keep people engaged in that process. I looked at the definition of engagement and found these two examples. One is, the fact of being involved with something. And another that adds a psychosocial component specifically says emotional involvement or commitment, which is exactly what I think you were talking about in differentiating the kinds of motivation.  I also found this interesting description of how engagement feels when riding a horse. Now, I am not a horse person. However, this description resonates with me, and I wonder if it does with you as well. I think it has application in how we think about aphasia rehabilitation. Paraphrasing from the site, Happy-HorseTraining.com, and I bet you never thought that aphasia and happy horse training would be in the same sentence, but there they are. “There are different degrees of engagement, and it can come and go when we are writing in itself. It is a particular gymnastic state when the horse brings into action, a specific set of postural muscles, which fundamentally alter the dynamic of how he carries himself. It is only in this state that the horse is able to carry the rider in balance, and without the damaging effects that otherwise a rider inevitably has on the horse. This is why any educated rider who cares about their horse’s well-being will make engagement a priority when they ride. Apart from the fact that an unbalanced horse is never a pleasure to ride, nor is it safe. The engagement of the horse gives you the following sensations: you feel the power from the hind legs feeding underneath your seat, instead of pushing out behind, and you feel lifted up by the horse’s back underneath the saddle, instead of dropped into a hollow. Above all, engagement is an incredibly good feeling for both the horse and the rider, because we instinctively enjoy the feeling of balance and power. Instead of always focusing on what you are doing when you ride, start to become aware of the moments when it simply feels good. This is the most reliable way of finding the direction towards a correct engagement.” Several phrases in this description such as being engaged is a good feeling for both patient and clinicians (those are my words, replacing horse and rider) they resonate with me because I think we instinctively enjoy the feeling of balance and power. What do you think, Mike? Mike: I completely agree, I think we all have a sense of what that feels like. Some people might call it flow. And in fact, there's a theory of flow and in that theory, they say, essentially, that we get into a flow state, when there is a particular balance between our skills and ability, and the degree of challenge that we're facing such that if the challenge is too great for our skills, then flow is lost. If there isn't enough challenge to capture our attention, then we're not going to have the kind of absorption that we might have in that flow state. I certainly think most of us have had that experience working with a client where, particularly after we get to know them for a while, and we've developed some skill at facilitating their communication abilities, or some aspect of a treatment that we're working on and things are starting to flow. I know that when I was at the VA in Pittsburgh, working in their Intensive Aphasia Treatment Program, one of the things I noticed was that, we worked with people for a whole month, and after about a week or two, I felt as if I was really dialed in. I was like an instrument that was being tuned, so that I could really exquisitely cue my client and facilitate their production. When we think about engagement, people have written about engagement as an experience that is co-constructed, it is a process. People have also talked about it as a state, and flow state would be an example. In going back to Self-Determination Theory, intrinsic motivation would probably be very closely related to this idea of a flow state in the sense that when we're intrinsically motivated, we're drawn to do something because we get some satisfaction out of the very act of doing it. In Self-Determination Theory, the ingredients that contribute to intrinsic motivation are that our sense of competency is being satisfied, we're feeling effective. In fact, one of the details of that competency satisfaction is that there's an optimal challenge, that we're meeting, a challenge that is not too hard, not too easy. The other ingredient that's being addressed is we're it we're doing it truly out of our own choice freely, without a sense of pressure, because we genuinely want to. Janet: That makes a lot of sense to me as you talk about engagement and motivation, and how we can apply it in the aphasia rehabilitation sessions that we do in in our program planning. I wonder if you had any other additional thoughts you might want to share at the moment about how we can think theoretically, the theories of motivation and how we can apply those to our aphasia rehabilitation practice? Mike: Sure, you know, when I started off as a therapist, and I was thinking about ways to motivate my clients and to increase their engagement, I think I often thought about the stimulus. I thought about making the activity more interesting to them. I thought about incorporating their hobbies, or something like that. And I think that practices is fairly common. But again, it tends to be focused on the interesting aspects of the stimuli. I think when we look at theories of motivation, we realize that there are deeper needs, that people have needs that are going to provide more of this motivational energy and provide a kind of energy that sustains itself for longer. I think when we focus on some of these more superficial aspects, quite honestly, of therapy, they just don't have the staying power. And at least in Self-Determination Theory, there's a concept of basic psychological needs. In this theory, they've identified three, (1) the need to feel autonomous, to feel that what we're doing is truly of our own choice that we desire to do it, (2) the need to feel competent at doing those things that we want to do, and (3) the need to feel connected to other people, what's called the need for relatedness, to feel that there are people who care about us, there are people we care about, and that this care is unconditional. I think if therapy and rehabilitation is constructed in a way where these needs are satisfied, then we're going to have a lot more fuel for engagement, and particularly when we hit the different challenges that people have to cope with.  Now, the listener may be wondering, well, exactly how did these needs influence motivation, and, to be honest, I probably don't have time to go into that in much detail, but essentially, it contributes to motivation in two ways. Number one is, at least according to Self-Determination Theory, these needs are innate. We tend to be drawn towards activities, goals and contacts, where these needs are being satisfied. These needs fuel a process called internalization, which is the human tendency to kick in the recommendations that belief, the values, the practices of important people around us, and to identify with them and to make them our own beliefs and practices and what not.  I think in rehabilitation, we do a fair amount of teaching in one way or another and recommending and espousing certain beliefs and values that we think will serve people in positive ways. In the dynamics of a relationship and satisfying these needs, there is a kind of a security and a trust, and a nurturance that our clients feel and that increases the likelihood that they do take on what we have to offer and make it their own and, develop some ownership over it. Of course, that really is going to form the foundation of a more persistent engagement. Janet: Mike, in the past year during the pandemic, and its requirement for social isolation, which perhaps may continue for several months into the future, increased mental health challenges, such as depression, have appeared in the general population, and likely also in persons with aphasia. How do you think that fostering engagement in aphasia rehabilitation and in communication interaction can help persons with aphasia cope and indeed thrive during these challenging times? Mike: Yeah, that's a that's a really interesting question. Staying on this notion of a psychological need. Self-Determination Theory is not the only psychological theory that proposes that humans have psychological needs. What these theories tend to have in common, these needs-based theories, is that it's the satisfaction of these needs that is necessary for us to be psychologically healthy. In fact, in Self-Determination Theory, these needs for autonomy, competence and relatedness are sometimes referred to as psychological nutrients, communicating the idea that just like physical, dietary nutrition, that these elements really do need to be addressed for us to be optimally healthy. I think that as therapists, of course, we have our limits. In my sessions with clients and the dynamics of our interaction, I do the best I can to address and satisfy these needs. That would also include the kind of goals, collaborative goal setting that we might do, and, and I will frankly discuss these needs with clients and family members, too, and people seem to get it. Other examples are, let's take the need for relatedness, which is not just satisfied between individuals, a client-clinician relationship, or a romantic relationship, or a parent child relationship, but it's also satisfied when people have a sense of belongingness to community. I think, right now, I've noticed that a couple of the aphasia groups that I belong to and facilitate seem to be playing a really important role in helping people feel connected to a community. Hopefully that is having a prophylactic effect in terms of helping people stay psychologically well. Janet: Which again makes sense. But as you are interacting with people, both patients with aphasia and their caregivers, what are some of the indicators you see, that suggest a client is engaged in rehabilitation, or not engaged? How do you measure engagement or feel confident in identifying when a patient is engaged with you in the rehab process? Mike: There are some measurements of engagement out there. Off the top of my head I don't know how valid they are. There are most definitely a number of measurements of motivation and Self-Determination Theory related measures of intrinsic motivation, of autonomous versus controlled forms of motivation, and need satisfaction. I don't administer those tests myself in my clinical practice, although I sometimes pull one aside to guide the kind of conversation that I might have with a client so that I can kind of get a sense for whether they're really struggling with this need for autonomy. In other words, they're not feeling as if they're having much choice over their life, that they have a sense of doing what is important to them, or steering the conversation towards getting a sense of how competent they feel, doing the things that are important to them, how connected they are to friends and family, etc. In general, I guess I rely more on my interactions with people and my observations. I think in terms of kind of markers of engagement, I think it does look different at different stages of rehabilitation. Early after a stroke, for example, or early in a clinical relationship, our clients often don't understand enough about their disorder, about the process of rehabilitation, to be real engaged the collaborators. At that point engagement is more focused on them being engaged in wanting to learn about aphasia, and the options for rehabilitation and whatnot. In so in the beginning, I'm spending more effort supporting people developing some competencies that will help them become more true collaborators, so that later on engagement is manifest much more in the sense of them participating in decision making and sharing their opinions on different treatment approaches, for example, then sharing their observations of what's going on with them and their progress towards their goals. So, I guess, overall, my experience has been when things are going well, that people start off most definitely curious and engaged in that way. Over time, they develop more ownership over the process and become, if not collaborators, maybe even more than that, for lack of a better word, become their own therapist. Then, of course, there are, I guess you could say, the more traditional observation observations of engagement, adherence to treatment schedules, home practice schedules, following up on recommendations, things of that nature. As a kind of an example, I think of the way one can use a theory of motivation to maybe start to think about some of the patterns of behavior that we see. I'll sometimes see clients who are using an app on their iPad and so I can monitor their practice how often they're practicing, when they're practicing. I might see that they kind of don't practice much until the day before their scheduled session with me. And to me, that's really one example of someone being in a more controlled form of motivation, wherein the reason for them to be motivated is perhaps the desire to maintain my approval of them. When our motives are external to us they don't really exert much influence until they're in proximity. And so, as we get closer to the scheduled appointment, all of a sudden, this external motivator starts to kick in, and they'll do some practice. I might look at that and realize that there's something missing in terms of addressing goals, etc. so that people are more truly, the genuinely autonomously motivated, in which case, the pattern would be more like, not just that people are more persistent on their own, but at times, they're even asking for more. Janet: That is a good place to leave it because you've been helping me visualize this picture of engagement as a process. Everything's so new in the beginning of a person's journey through aphasia. And as the clinician, you are helping them become more comfortable with that and take more of an active role, if you will, owning the aphasia and what to do about it. Let me ask from your experience and research, what advice or techniques or suggestions can you give to our listeners that they can take and incorporate into their clinical practice? I know you've described a little bit about how you use your observations, but are there some specific pieces of information you can impart to our listeners? Mike: Sure. I think engagement starts with me. If I am truly engaged, then that tends to facilitate the engagement of my clients. If we think about when someone listens to us, let's say and listens to our story, in a manner in which they genuinely seem to be trying to understand our perspective, that tends to cause us to be a little bit more interested in in it ourselves. I think engagement is contagious. You will read in in qualitative studies, rehab patients particularly in the acute phase, talk about this need to kind of draw on the positive energy of their clinicians to carry them through this difficult time. Now, there are some specific practices that have been described that are focused on satisfying these basic psychological needs, which are kind of the ingredients of motivation, and therefore, engagement. Maybe it would be helpful for me to just go through the list of them, or the short list, so people can kind of get a flavor for what this might look like.  The need for a satisfying people's autonomy is often achieved through first doing what is called perspective taking, listening to people, their concerns, their stories, with the particular intention to try and see the world through their eyes. That kind of listening interest is an acknowledgement of a person's autonomy, and therefore, its autonomy satisfying. Providing choice has been studied quite a bit in terms of satisfying the need for autonomy. I think most of us are familiar with that, because it plays a role in shared decision-making and client-centered goal setting, providing rationales for any of the recommendations we make, rationales that are meaningful, from the client’s perspective, that allow people to genuinely self-endorse them and to kind of take ownership of them. That's believed to be autonomy supportive. Finally, establishing an environment that is not pressuring. In other words, that we don't set up contingencies either explicitly or implicitly. What I mean by that, specifically, is that people don't feel that they need to be a certain way, or behave in a certain way, in order to secure our approval, and our energy, and also to some degree, that means paying attention to the language that we use. Those people who are familiar with motivational interviewing will know that, in motivational interviewing, you pay quite close attention to the language your client is using, the language you're using. For example, you may make an extra effort to stay away from controlling language such as “you should”, “you must”, “you need to”, etc. As far as satisfying the need for competency, that starts by providing the kind of structure that makes people feel secure, that makes them feel supported in making progress. It’s not chaotic, therapy is not a chaotic experience, it's somewhat predictable. I mentioned previously optimal challenge, such as finding tasks, goals that are optimally challenging. The nature of the feedback that we give can support people's needs to feel competent, in other words, that our feedback is more informational than evaluative. It's informational in the sense that, once we give it people have a sense of how to do better next time. It's useful a feedback. And then of course, monitoring progress is an important component of satisfying people's needs to feel competency within rehabilitation and measuring progress in a way that is meaningful to clients. As far as the need for relatedness. In general, it means that we do not send any overt or covert signals that our positive regard for our clients is in any way dependent on what they say or do. Let them know that our care for them is unconditional, and that our motivation is autonomous. In other words, that they are not an object to us. What I mean by that is, they are not a means to an end for us they are not a productivity requirement, they are not a means of generating income, they are not a means of stroking our egos, that we genuinely empathize with them and want to help. And they that is their experience of us. Janet: It does sound to me like you've spent a lot of time thinking about motivation and engagement, and also applying it in your everyday work with patients and their family members. Would you describe for us one of the successful experiences you've had and engaging patients and family members in your rehab process? Mike: Sure. I can honestly say that all of my clients now and in recent memory, or I think, successes. One of the things, as I mentioned before, that I've been experimenting with more is working with caregivers and talking about these basic psychological needs and how we, the people around the person with aphasia, can sometimes out of good intention, thwart those needs, and how they can do some simple things, to help people feel autonomous, to help them feel competent, to help them feel connected to others. I've gotten a lot of good feedback from starting to do that. Another thing I've been experimenting with are very, very short term goals. In goal setting theory, which is referenced now and then in rehab literature, proximal goals, very short term goals are thought to be more motivating than long term goals. My PT colleagues are fortunate in the sense that the kinds of goals their clients are working towards her so much more concrete and tangible. A person could not transfer from their bed to their wheelchair independently. Now, they can. It's easy to observe. Communication improvements are more abstract. To some degree, I think my patients suffer from struggling more to have a tangible, concrete sense that they're making improvements towards their goal. And so I've been working with super short term goals. In other words, goals, like,” Okay, what would you like to achieve by next week.” What's been really interesting about that process is that when we think about a goal in that short of a term, it tends to focus the mind in ways that longer term goals, one month, two months, three months, just don't. It seems to cause people to really reflect carefully on their strengths, what they can do. Then there’s this heightened sense of expectation that people have, because they're going to experience meeting a goal in a very short timeframe. Now, of course if we can link these one week goals up towards some longer term valued goal, all the better. But that's been a very interesting process, and really helpful not just for my clients, but for me as a as a clinician, too. Janet: I can imagine it has. It must, again, thinking back to the definitions we talked about earlier on engagement, make you feel good, help you and your client feel good that you're in balance with each other. You're working together, little steps, baby steps to achieve some larger goal in future time. Mike: Yeah, I think setting goals and thinking about goals is, is difficult for all of us. And by really shortening the distance. It makes it easier to conceptualize, Janet: I can imagine. Well Mike, as we bring this conversation to a close, and quite frankly, I would rather not. I'd rather go on talking to you for hours and hours because I know that you've spent a good deal of time studying this topic, and practicing this topic, and can talk for days with us about motivation and engagement and its value and importance in our rehabilitation activities. But we are limited on time, so as we bring this conversation to a close, are there any last comments on engagement or motivation? Or in particular Self-Determination Theory, that you would like to share with us?  Mike: Yeah, I think there may be two things. First is that we don't motivate people. We support people's motivation. We support people in ways that contributes to their need for motivation to show up. I want to make that statement because I know that earlier in my career, I spent a lot of time trying to persuade people to believe certain things, to do certain things, and whatnot. In a related way, you know, for me, motivation was a thorn in my side, because I often felt that my clients were not as engaged in a persistent way as they needed to be to kind of reap the benefits that treatment had to offer. That wasn't just my perspective, they felt the same way, and they often didn't know why. It was some time before it dawned on me that there was this factor - motivation - that I put a lot of emphasis on, but I essentially knew nothing about it, I followed my intuition. Learning some theories of motivation, not just Self-Determination Theory, although I think that's my favorite one, I think it's the best fit for the people that I see in my practice, but I draw from other theories, too, this has really transformed my practice and made me more comfortable in my skin, as well as I think more effective. I'd suggest that people who are interested in this topic to start to read about it. One thing about motivation is that the factors that influence motivation tend to be universal, so that we can read about motivation in the context of education or even the workplace, and I think with some confidence, translate that into our own practice. So even though their research is really not there, in speech pathology land, there is a lot of useful research that we can draw upon. Janet: Thank you, that's a good recommendation. I hope that our listeners will take that recommendation, and I hope they will to learn from a project, Mike, that I know you and I with some other people are working on to really examine how people in speech language pathology are reporting motivation when they report their clinical work. We look forward to disseminating that information in a future venue. I want to thank you so much for your time today, Mike, and for chatting with me about motivation and engagement in aphasia rehabilitation.    This is Janet Patterson speaking from the VA in Northern California, and along with Aphasia Access, I would like to thank my guest, Mike Biel for sharing his knowledge, wisdom and experience in studying and practicing principles of motivation, and engagement in aphasia rehabilitation. You can find references and links in the Show Notes from today's podcast interview with Dr. Michael Biel, at Aphasia Access under the Resource Tab on the Homepage. On behalf of Aphasia Access, we thank you for listening to this episode of The Aphasia Access Conversation Podcast project. 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. Resources   @mebiel  https://twitter.com/Mebiel  Self-Determination Theory http://selfdeterminationtheory.org/  VA Pittsburgh Program for Intensive Residential Aphasia Treatment & Education (PIRATE) https://www.va.gov/pittsburgh-health-care/programs/pirate/

During this episode, Ellen Bernstein-Ellis, Co-Director of the Aphasia Treatment Program at Cal State East Bay in the Department of Speech, Language and Hearing Sciences, talks with Bob Williams and Tauna Szymanski from CommunicationFIRST. Guest Bios Bob Williams, Policy Director of CommunicationFIRST, helped to co-found the organization in 2019, after retiring from a distinguished four-decade career in federal and state government and the nonprofit sector, most recently as Director of the US Independent Living Administration at the US Department of Health and Human Services. He is a nationally recognized leader on policy issues relating to supporting people with the most significant disabilities to live, work, and thrive in their own homes and communities. For over 60 years, Mr. Williams has relied on an array of augmentative and alternative communication (AAC) strategies, including a series of speech generating devices over the past three decades. He lives with his wife in Washington, DC, where they enjoy visits with the grandkids, walking along the riverfront, Netflix binges, and all things Springsteen. Tauna Szymanski became the Executive Director and Legal Director of CommunicationFIRST in 2019. Previously, she spent twenty years working on climate change law and policy, including 13 years at an international law firm in London and Washington, DC, where she volunteered and represented clients pro bono in disability rights and inclusive education matters. Ms. Szymanski has graduate degrees in law and public policy. She grew up around the world as the child of US Foreign Service Officers and is multiply disabled.   In today’s episode you will: Learn about CommunicationFIRST’s efforts to advocate for policy reform in order to protect and advance the rights of individuals with speech-related disabilities Hear the story behind the June 2020 ruling to protect the rights of individuals with communication disability to have access to their communication support partner in the hospital, even during Covid Find out the benefits to filling out the Communication Tool Kit before a person with aphasia enters a hospital Learn about using the Hospital Visitation checklist offered by CommunicationFIRST Find out why we talk about Bruce Springsteen   Edited show notes:  Greetings to our Podcast listeners, This is Ellen Bernstein-Ellis, your host today, and you’re listening to an updated version of episode 68 with CommunicationFIRST. Let me share what happened to the original podcast because there's a valuable lesson in this story. Bob Williams, one of the guests that you’ll be meeting shortly, uses an assistive device to speak. He is indeed an eloquent and powerful speaker, as you will soon hear.  Bob spends considerable time preparing for interviews by prerecording content on his device since real time responses can be time consuming. However, as a matter of principle, Bob always opens his presentations by typing in real time in order to educate the public by providing some insight into the fuller experience of being an AAC user. The remainder of his interview responses are played at a more typical speaking rate. Unfortunately, because I didn't provide explicit instructions to our podcast producer, Bob’s response in that section of the podcast was edited from  four and a half minutes to 30 seconds to eliminate the audio lag. I failed to catch this unexpected revision in the final copy before it was posted.  I want to thank Bob, and Tauna, our other guest, for bringing this to our attention so we could redo the episode and restore his original response as it was delivered. I sincerely offer my apologies and appreciate their gracious understanding as we worked together to resolve this issue. Thank you too to our podcast producer for quickly responding to our concerns. To our listeners, Bob’s first response is a small but important window into the effort it takes to be an AAC user and also how to be a respectful listener and effective communication partner.  I found Bob and Tauna's interview profoundly impactful. They are passionate, expert advocates, as their mission states,  in advancing the rights, autonomy, opportunity, and dignity of people with speech-related communication disabilities and conditions. Be sure to check out the CommunicationFIRST website at www.communicationfirst.org Interviewer: Ellen Bernstein-Ellis Welcome to both of you today. Thank you for being here Bob, do you want to add anything to your impressive bio? What brought you to CommunicationFIRST?   I want to explain to our listeners that for this response, you're going to respond in real time, which means the listener is going to hear some typing as you compose your response. Thank you, Bob. Bob Williams  Thank you. Over 50 years ago, my parents, brothers and sisters, and I started to figure out ways I could express myself and that is why we can have this conversation. CommunicationFIRST is committed to making certain that all children and adults, and older Americans with disabilities that need ACC get that same chance. Bob, you and I spoke before the interview of how important it was to actually demonstrate to show how laborious and effortful it is for people with communication disabilities to communicate effectively, and to how important is for the partner to be patient and develop good listening skills. And you're actually the one who pointed out the corollary with individuals with aphasia, who may also need the partner to give them more time and have more patience so they can participate fully in the conversation. So thank you for sharing that and making sure that lesson is out there today.  I'd like to share my first lesson about being a good communication partner for someone using AAC, because I set up our tech meeting, and learned the hard way that the password was actually a barrier to you joining our meeting. By the time we figured out the problem, there just wasn't time for you to participate because you had another Zoom meeting you had to attend. And that one was at the White House, so that meeting won out. It left me totally impressed, of course. I decided this was a good lesson to share with our listeners. I've learned a lot in preparing and appreciate this honor of working with you for this interview. Thank you. Bob, how do you get ready for something like this that involves prepared and live responses? Bob Williams  I prepare most of what I am going to say in advance. Having worked with members of Congress, a cabinet secretary, and others who place a high value in brevity, has really developed my skills. To do this, I cut and paste, and repurpose as much as what I can, but it is time intensive. For the last 30 years, I have composed everything on my computer and transferred it to my speech generating device, which has advantages and downsides. Now, I am starting to experiment with the hybrid approach. You heard what I spelled out on my device. And what you are hearing now is the read aloud feature which is included in Microsoft Word. That voice quality is better and it cuts out the transferring and other hassles. Once I get the routine down, I am confident it will improve things. Responding to things in real time is never easy. It is just something you deal with as best you can. Bob, before we started recording, you explained that there will be some pauses between our questions because you have to physically reposition the cursor to read your next response. I just want to give the listener a heads up that they may have to wait a moment. Getting back to what you just said, Bob, what are the implications of what you shared for the people we work with who have aphasia? Bob Williams  If there is anything I want you to take away from what I say, it is this, the people you work with are making huge motoric and cognitive effort to express themselves and to be understood, regardless of whether they are using a speech generating device or not. The work they do is often Herculean. But many never realize that and view individuals with aphasia and others with significant expressive disabilities as less than, as having little to no human need, ability, or right to express themselves and to be heard. Because you and I know better, our most fundamental duty is to shatter this narrative. The idea that we can acquiesce and be complicit in letting people live incommunicado must become morally repugnant. Bob, that gave me the chills. It's so eloquent and so beautiful. Thank you. I think it leads us to the next question. It’s about the passion you and Tauna both share for communication access.  What are the mission and values of CommunicationFIRST? Bob Williams  We often get asked how we can expect to defend and expand on the civil rights and opportunities of people who seem to have nothing in common, except, of course, that we are voiceless and powerless. I was among those who was asked much the same question about what was then seen as this pipedream called the Americans with Disabilities Act. It is true we are diverse demographically, in terms of the disabilities and conditions we have, when and how we acquired them, how we communicate and a host of factors.  But here is what unites us. Like all people, we have the same intrinsic human need. The same human capacity and the same inalienable human and civil rights to effectively express ourselves and to be understood. Recognizing these truths about ourselves, that there is strength in our numbers, and recognizing we have rights and must demand them. These are the essential building blocks of CommunicationFIRST and the human and civil rights and liberties movement we are forging.  Thank you, Bob. My next question is for you, Tauna. Who do you serve? And what is your connection to aphasia? Tauna Szymanski  Thank you, Ellen, for the invitation to join your podcast today. This is actually our first podcast, so we're having a lot of fun with this. As Bob suggested, CommunicationFIRST is a very broad and diverse organization in terms of the group of people we seek to represent. So, the one commonality is that we will seek to advance the interests and the rights of anyone who cannot rely on speech to be understood, and that includes people who were born with a speech disability, and those who acquire a condition or disability later in life that makes speech communication difficult, and that includes people with aphasia. I'd like to hear a little more about the history of CommunicationFIRST. Tauna Szymanski  Sure. Well, as you noted earlier, we were only founded about 18 months ago. We publicly launched in October of 2019. It really came about over the prior few prior few years, as we realized that there were well established organizations. effective organizations, that represented people with the other two types of communication disabilities, vision and hearing disabilities, but strangely, not a single organization that really worked on the third type of communication disability, speech related disabilities. So there were, you know, there are some organizations for professionals and there's organizations that sort of worked on broader issues impacting folks with intellectual and developmental disabilities, some of whom have speech related disabilities, but no one who's really focused on the rights and interests of this large population, which is just equally as large as those other two communication disabilities. It came about because of the realization and the fact that the issues are just as intractable, if not more so, than for the other two populations of people with communication disabilities. I'm really grateful that you collaboratively started this organization. I didn't realize it was a new one, because you have already accomplished so much, just looking at your website. How are you seeking to achieve your mission?  Bob Williams  Well, it begins like everything else involving changing hearts and minds. Creating greater justice must begin in conversations like this one. Most of all, it takes creating the opportunity, spaces, and support for more of us who need AAC to get to know each other. And to recognize that we share not just the same kind of challenges, prejudice, and discrimination in common, but that the civil rights, accommodations, and support also are largely the same. And we share a common responsibility to each other to bring such changes about. Thank you. You are an eloquent speaker. Can you explain why CommunicationFIRST views this as right as a civil rights challenge?  Bob Williams  The National Aphasia Association 2020 survey on public awareness surveyed 1001 persons asking if having a speech disability is a sign that someone has an intellectual disability. Fortunately, 58% of the respondents said they either strongly or somewhat disagreed that is a true statement. But 42% said they either strongly or somewhat agreed with the statement. You and I know there is nothing soft or benign about the bigotry of low expectations. Or of social isolation, institutionalization and a lifetime incommunicado. We all have witnessed its absurd and horrid injustices. It is time to call it what it is. And to end it. This is why we do this work and need allies like all of you to join in. We have to work together. That is absolutely right. We're always stronger together. What is something big that you've learned during COVID, about healthcare ACC disparities? Tauna Szymanski  I can try to start out with this one. So as I mentioned, we launched only six months before COVID broke out. So, we had to very quickly pivot our plan or rollout for the first year to addressing what we quickly realized would be a very significant issue impacting our population-- one slice of which we knew would be these new no visitor policies in hospital and congregate care settings.  Especially because we know that virtually everyone in our population who has expressive communication disabilities needs some kind of human physical support in order to communicate. After everything shut down, and hospitals started implementing these no visitor policies, we issued toolkits about rights. Then we started getting calls about this issue and, in the course of doing that work, I personally have really come to appreciate and develop a much broader and deeper understanding of what communication really is and how much broader it is than just speech and hearing and vision.  Also how individualized communication and communication supports are. That's something that's actually been a personal blessing to me and in the work as we started with this organization. It's been an unexpected gift, really. Thank you for sharing that, Tauna. And Bob, do you want to speak to something you've learned during COVID and health and AAC disparities? Bob Williams  We have known about the deep disparities in health, education, and economic well-being that are part of the everyday lives of African Americans and other people of color with and without disabilities long before the pandemic and the vile white supremacy of the last several years. Because of the work of the National Black Association for Speech, Language and Hearing, as well as researchers and practitioners like Dr. Charles Ellis, and others, we are learning more. Not just that black, indigenous people of color and those who are multilingual are more likely to acquire more significant degrees of like aphasia, Parkinson, TBI and early onset disabilities like cerebral palsy, which require them to use an array of communication and other services and supports. But they also face disproportionate barriers and discrimination in accessing the services, AAC, and assistive technology required to each lead a decent life. Absolutely. And I'm admirer of Dr. Charles Ellis's work as well. So Bob, what needs to happen to get policymakers to understand and address both the systemic barriers as well as effective practices that research is identifying? And how can we help to elevate the need for action. Bob Williams  I mentioned Dr. Ellis, a leading expert on aphasia among black people and the director of the Communication Equity and Outcomes Laboratory at East Carolina University. Over the past several months, I have read his work as well as that of others doing similar research. And I think it's accurate to say we know and are learning more about what inequity in access to AAC and communication supports look like, as well as its devastating effects it has on people. We must now create urgency around what communication equity must look like and what we must do to retain it. In January, we prepared and were joined by 47 other organizations in submitting a Communication Equity Call to Action to provide the Biden administration. In it, we call on them to take concrete actions to create equal access to AAC, regardless of one's race, disability, age, language, or other status. Check it out on our website. And we will be glad to talk to anyone who wants to become more involved in our efforts. Thank you, thank you, for the work you're doing. That leads to the topic of what introduced me to CommunicationFIRST as an organization this summer in the first place. Could you please tell our listeners how you met Patient GS, that patient who's actually behind the June 2020 ruling to protect the rights of individuals with communication disability to have access to their communication support partner in a hospital setting, even during COVID?  Tauna Szymanski  As I mentioned earlier, in March of 2020, we issued a COVID-19 Communication Rights toolkit, which was designed to be a way or resource for folks who were going into the hospital due to COVID, who needed to ensure that they could access the communication support they needed in that environment, even if that communication support needed to be another human being.  So in other words, it was an accommodation request under disability rights laws for someone with a communication disability to be provided a reasonable modification to those no visitor policies and to other non-human communication supports like AAC and other communication accommodations that might be needed. That had come out in late March and I believe it was about two weeks later, I got a cold call on our main line from a woman in Connecticut whose mother had just been taken to the hospital less than 24 hours prior by ambulance. She was a 73 year old woman, GS were like initials to keep her identity confidential, but she's since come public. Her name is Joan Parsons, and she had acquired aphasia, I think 11 or 12 years prior due to an aneurysm and she was going to the hospital for non-COVID-related reasons. Her family, who had always accompanied her in the ambulance on necessary hospital visits and had remained with her in the hospital to ensure that she could communicate and understand, were prevented from doing so.  One thing led to another and we attempted to advocate and ultimately we needed to file an administrative complaint with the Office for Civil Rights at the US Department of Health and Human Services and something we did with Disability Rights Connecticut and a few other disability rights organizations. Can you can you share a little bit more about what the ruling entailed?  Tauna Szymanski  We filed that complaint in early May and very quickly the Office for Civil Rights (OCR) opened up what's called Early Case Resolution procedure, which all the parties have to agree to. The complaint was both against this individual hospital, which was Hartford Hospital in Connecticut, but also against the state of Connecticut for not having a statewide policy that reminded hospitals of this need to include exceptions in these no visitor policies for people with disabilities who needed in person support. It was sort of a two tiered complaint. Over the course of the next month or so, OCR, and Connecticut, and the hospital, and the disability groups, negotiated resolution to those complaints.  Ultimately, the resolution was an agreement for Patient GS, to be ensure that she could have that in person access. She was actually still hospitalized, after getting diagnosed with COVID, and was in the ICU for this entire time, six weeks. She was still in the hospital, I believe, that day we signed it. She ended up being released later, but we had resolved the practical issues earlier so she was able to be supported.  But the broader results of this complaint was that the state of Connecticut issued emergency regulations that essentially were a policy that laid out the law and said, yes, people with disabilities are entitled to have a support person present if needed, despite hospital visitor policies. It laid out a lot of the details about PPE and safety precautions that need to be taken. It wasn't a lawsuit, but rather, it was a decision that was endorsed by the Office for Civil Rights. It became a national precedent and an indication of what the federal government was saying that, yes, this is what needs to happen.  After that, we didn't have a whole lot of issues. We would just point people who were calling with these issues to that resolution. That was the backbone and that came out June 9 of 2020.   That had really widespread impact that summer. I saw the posting, that's how it came to my attention. We were cheering because for us, that's landmark, as protection for the people we work with and care about. They we're telling us stories of being so scared about going to the hospital and not being able to communicate.  Not only did you have that landmark ruling, but you also created this Hospital Visitation Framework document. Could you please speak to what the main criteria are for evaluating if a hospital policy is discriminatory? Let me share with the listeners one quote from the document: “Doctors have an ethical obligation to seek and obtain informed consent from every patient, something that cannot take place, if the patient does not have the tools and supports necessary to become informed, ask questions and make decisions and communicate consent. No visitor policies pose serious barriers to individuals with disabilities who require in person supports.” Could you explain a little bit more about the hospital visitation framework? Tauna Szymanski  Sure. Together with the other disability rights organizations that we worked with on this issue, we put together this document, the Hospital Evaluation Framework. It was put together to compile best practices really, to highlight some of the better state policies and hospital policies out there in terms of the detail.  One of the things that I never thought I would, a year and a half ago, be looking at were these nitty gritty sort of details like under what circumstances can a support person eat and use the restroom while in the hospital? This is really what a lot of these negotiations come down to is that kind of detail. States still are all over the map with their policies and some states don't even have policies on this issue. And hospitals are all over the map, especially in states that don't have policies. We thought it made sense. I was on a daily basis getting calls on these issues and coaching folks in various states here are the sorts of things that you need to be thinking about.  As we were negotiating with OCR and Connecticut about elements that are important to put in these policies, this (framework) was the compilation of a lot of these issues. And we wanted to make it helpful for states and hospitals to adopt comprehensive policies that ensure that patients with disabilities would be able to be supported and have equal access. Part of this document reminds folks of this ethical and legal obligation that healthcare providers have to ensure they're seeking and obtaining informed consent from their patients. So if a patient has a communication disability, they're still entitled to be provided with informed consent.  Part of becoming informed is being able to understand what is being presented in terms of treatment options and also being able to ask questions about those options. And then, of course, providing that consent. Much of what we've had to do in terms of advocating on this issue is reminding healthcare providers that you still have to do this, right? Just because that person doesn't have the communication tools right now, you have to provide those (tools) to ensure that they can have that opportunity. And in the case of aphasia, and with Patient GS, a lot of what we were advocating for was reminding (providers) that Patient GS has aphasia and she can understand a lot, but sometimes she needs help with rephrasing. The only person that can really help with that is someone who knows her and knows the background of how she understands and expresses things. And how she can be asked questions in a certain way to ensure that she is answering in a way that is going to lead to an agreement, or decision, or consent.  This Evaluation Framework document methodically goes through some of these elements that we found were really essential to have in some of these no visitor policies. Including, is there a requirement in the state policy for a hospital to follow the policy? Some of them suggested it was optional. Or, what kind of facilities does the Framework cover? Does it just include hospitals? Or, does it also include congregate care type facilities, long term care facilities, skilled nursing, etc.?  Some were very selective about the types of disabilities that they listed and yet you don't need to have a certain type of disability to qualify under the ADA for an accommodation. So it goes through some of that. What we also thought was helpful would be to footnote each of these with real examples from states, including the language that they've used in their policies, to address each of these points. You can see the variation in how some states have done this. That was, hopefully, a helpful resource. We've used it over time as we've worked in new states to encourage better policy adoption.  That’s a really big undertaking. And right before we started our interview, you mentioned that there's been some updates as of yesterday. Do you want to share?  Tauna Szymanski  Sure. This was specifically about hospitals. The Patient GS situation was really about hospital visitation. And we had been hearing increasingly from folks in nursing homes and institutions, for lack of a better term, and intermediate care facilities, assisted living facilities, skilled nursing facilities, about similar issues about people not being able to go into to visit and then to support. We always start by emphasizing that distinction between a visitor and a disability support person, because in a lot of these facilities, there is actually a legal right to visitation. But more strongly, under disability rights laws, there's this separate and independent right to effective communication and certain disability related support. There was no real guidance about those rights in these other types of settings at the time, and so we, along with several other disability and aging groups, spent a good chunk of last summer pushing CMS, the Centers for Medicare and Medicaid Services, to issue guidance on those rights in those settings.  And finally, in September of last year, we got some guidance about nursing home visitation. Then in January of 2021, we got guidance about visitation on intermediate care facilities, and psychiatric residential treatment facilities. Yesterday, just an hour after we presented about the nursing home and ICF visitation, HHS and CMS actually issued an update on the nursing home guidance on visitation and made it stronger, talking about the role of vaccinations and that sort of thing. So essentially, all of these other guidance documents include that additional language about reminding those who run those facilities that that if a patient with a disability requires an outside support person to access the services and healthcare options that are provided in those settings, they're entitled to do so regardless of those no visitor policies. Some of the documentation and legal aspects can be overwhelming for families to navigate. That's why you put in place this COVID-19 Communication Rights Toolkit, which is very accessible. I urge all our listeners to share the link with families which we'll have in the show notes Could you explain what it is?  Tauna Szymanski  This was put together in March very, very quickly. It tries to simply lay out what those communication rights are in health care settings. Specifically, it includes a section about how you protect those rights and assert them. It includes links to the three different laws, which are the Americans with Disabilities Act, the Section 504 of the Rehabilitation Act, and Section 1557 of the Affordable Care Act. For advocates and lawyers in health care, hospitals, and whatever, they can click on the links to see the actual laws if they want to read them. And then it includes additional resources, like the Evaluation Framework. We included various memos and links to the guidance for state policies that we've compiled on our website. At the very back, there is something that you can actually print out designed to be a form that you present to the hospital when you're being admitted which says: here's my name, here's my emergency contact, here's the support I need to communicate. It could be this person, it could be this AAC device, I need wait time, please be patient, etc. It cites the law and asks people to put this document on my chart and you can keep a (copy of the) document. It’s designed to be used before you need to go to the hospital. We’ve heard that folks are actually doing it that way. Lots of folks have this filled out just in case they have to go to the hospital at some point. We have it translated in both Spanish and Chinese.   Maybe one of the tips for introducing this to a family, if a client has an upcoming surgery, is to refer them to this Communication Rights Toolkit, and encourage them to print out the Communication Rights form, right? Do you have any specific stories you want to share about its use at a hospital that's come back to your organization? Tauna Szymanski  I haven't heard long detailed stories about its use. But I have seen on many occasions, on Facebook, Twitter and in emails, that folks have brought this information to the hospital and have used it successfully. So that's been very gratifying. I was truly inspired and grateful for the work that your small organization has been able to accomplish during this time when so many families have spoken about feelings of loss and fear about not being able to advocate for their loved one in a situation that is already very, very scary. And it's just been compelling to see the difference that this organization has made.  I want to express my appreciation to Bob and to you, Tauna, for what you've accomplished. Thank you so much. And I hope our listeners will look at the links in the show notes to check out the Communication Toolkit and the Hospital Framework.  Also, in the show notes, Bob, you showed me yesterday that, as of March 3, you posted a video on the history of communication rights. I only had a chance to start watching it and I can hardly wait to finish it. I urge everybody to check out that video. It is going to be an amazing tool for sharing the importance and value of the history of bringing communication rights to people. Thank you for that. As we wrap this up, when we finally did get to have a tech check after creating a second meeting without the password, we started talking about Springsteen because I saw that noted in your bio, and I couldn't resist.  You liking Springsteen makes a lot of sense to me, because at heart, he is really a storyteller. It seems to me, that you too, are very much a storyteller and you understand deeply the value of being able to tell your story. I asked if you had a favorite Springsteen song that you'd like to share?  Bob Williams  As I told you before, this is the impossible question to answer. I first heard Bruce in 1972. I believe he was the warm up act for Richie Haven. But I was too focused on the redhead college student with me to give him any notice. Soon after, some friends turned me on to the stuff he did on albums, like Greetings from Asbury Park, and The Wild, the Innocent and the E Street Shuffle. So like every old friend, we have been through and continue to go through a lot together. In trying to make sense of this world, each in our own way, trying not to be blinded by the light. And to find some ways to make things more right. So you're telling me there is no one song? Bob Williams  No, but here are a few. I love ‘Jungleland’ for its artistry. As the man wails, it is a ballet being fought out in the alley. Clarence’s saxophone solo at the end always takes me places where I crave to be. ‘Racing in the Streets’ also calls out to me. It reminds me of my dad. His work ethic, his drive. The way he lived his life and expected us to do the same.  But if I really need my fix from the Boss, I listen to the ‘Ghost of Tom Joad’ and ‘Youngstown’. The injustices Bruce challenges in many of his songs are as real, if not deeper, today than ever. But so are the yearnings they inspire. That is the fix I keep going back for. Of course, I can belt out ‘Thunder Road’ and ‘Rosalita’, just about anything he sings, with the best of them. Absolutely ranks you as a top fan. I agree with you deeply. So thank you for sharing that answer.  I want to thank both of you for sharing your expertise today with our Aphasia Access members. I've learned a lot. And I'm hoping that we're able to get the good work that your organization is doing out to a lot more people. So thank you so much. References and Resources CommunicationFIRST COVID-19 Guidance https://communicationfirst.org/covid-19/covid-19-guidance/ https://secureservercdn.net/166.62.108.22/izh.66f.myftpupload.com/wp-content/uploads/2020/10/FINAL-Disability-Org-Guidance-on-COVID-19-Hospital-Visitation-Policies-updated-100720.pdf Americans with Disabilities Act featuring Bob Williams https://www.youtube.com/watch?v=fLg533x8vKE&feature=youtu.be CommunicationFIRST Covid-19 Communication Rights Toolkit https://communicationfirst.org/covid-19/

During this episode, Dr. Janet Patterson, Chief of the Audiology & Speech-Language Pathology Service at the VA Northern California Health Care System talks with Dr. Rebecca Hunting Pompon, assistant professor in the Department of Communication Sciences and Disorders at the University of Delaware in Newark, Delaware, about depression, the effect it can have on people with aphasia and their care partners, and how speech-language pathologists can recognize and address depression during aphasia rehabilitation.   Guest Bio Rebecca Hunting Pompon, Ph.D., is an Assistant Professor in Communication Sciences and Disorders at the University of Delaware, and director of the UD Aphasia & Rehabilitation Outcomes Lab. Prior to completing a Ph.D. in Speech and Hearing Sciences at the University of Washington, she earned an M.A. in Counseling at Seattle University and worked clinically in adult mental health. Dr. Hunting Pompon’s research focuses on examining psychological and cognitive factors in people with aphasia, and how these and other factors may impact aphasia treatment response. She also trains and advises clinicians on interpersonal communication and counseling skills adaptable for a variety of clinical contexts.    In today’s episode you will learn: about the similarities and differences among sadness, grief, and depression, and sobering statistics of their prevalence in persons with aphasia and their care partners, how the behavioral activation model can assist clinicians during planning an aphasia rehabilitation program for an individual with aphasia and his or her care partners, 5 tips to use in starting conversations about depression with persons with aphasia and their care partners, and fostering their engagement in the therapeutic enterprise,  the value of community support groups for persons with aphasia.   Janet: Rebecca, I would like to focus our conversation today on your work investigating depression, and other psychosocial factors that patients with aphasia and their care partners may experience. Let me begin our conversation by asking how we define and think about depression, because I think everyone has an idea about what depression is, and how it may manifest itself in an individual’s interaction with family and friends, and certainly in the past year, as we've moved through this worldwide pandemic, focus on depression has increased. You have studied depression in persons with aphasia, and how depression affects their care, so first, let me ask, how do you define depression? And then how often does it appear in persons with aphasia?    Rebecca: Depression is a concept that so many of us are familiar with. In one way or another, so many people have experienced depression themselves, or alongside a family member, so I think it's such a common concept. Likewise, many people know that the definition of depression that we use most often is about a mood disorder. Usually, the two fundamental ways we think about depression, clinically, is that it is either low mood, or it can be a loss of interest, or pleasure. So of course, we all experience this from time to time, but depression is really a much more marked, persistent low mood or loss of pleasure, or interest, and it can span across days and daily life and make a tremendous impact. Those two features go with some other features like a change in appetite, fatigue and energy loss. Some people experience a slowing of thought or slowing of physical movement, or experience trouble with concentrating, or trouble with focus. It also could include feeling worthless or excessive amounts of guilt, and it also can be accompanied by recurring thoughts of death, which can be with a plan or more abstractly without a specific plan. Those are the constellation of symptoms that can go with that formal depression diagnosis.   Of course, aphasia, as we all know, comes with some significant changes in functioning after stroke or other types of brain injury. Loss and grief are commonly experienced by many people with aphasia and their families as well. Unfortunately, those losses that are experienced with aphasia can lead to depression in a significant number of people. Let me give you a little bit of context on that. In the general adult population, maybe like 9% of the population or so may experience a mild to major depressive disorder at some point; the number goes up for people that have experienced stroke to about 30% or so. In studies of stroke survivors with aphasia, the number is significantly higher. We recently completed a study with about 120 people with aphasia, and about half of them reported symptoms that were associated with a depressive disorder, mild to major. And I think it's really important to note that this is based on 120 people that were motivated to participate, to volunteer for research. We really believe that actually, depression may be experienced by a quite a greater number of people with aphasia, because we're not capturing those people that are at home, they're not engaged in speech therapy, and we really wonder if rates of depression in aphasia might be quite a bit higher.    Janet: That is a stunning set of statistics when you think about all the people who don't report, can't report, or don't come into the clinic, and their feelings; their ideas are pretty much lost in the world. I appreciate the comment that the people participating in your study are motivated, and they experienced depression. It's out there, and we need to pay attention to it. As a clinician, how might one recognize the presence of depression in a client?   Rebecca: Depression can be really hard to observe at times. A lot of people with depression can mask their depression and seem to be doing fine. I've had this experience working with a number of people who seem to be really thriving after their stroke, but then getting into the details and discussing their life and their reactions, we come to find that they're struggling far more than we perceive that they are. Other times we may get some sense of an experience of depression, maybe we observe a lack of initiative or motivation during treatment or get some sense that our client is just not enjoying his or her activities the way that they used to, or the way that we hear from their loved ones, how they used to participate in their life. What do we do if we're wondering, “Hmm, depression? Is this a factor for this particular person?” It can be helpful to ask about the specific symptoms of depression, sometimes more than asking, “Are you depressed?” I that's true for a couple of reasons. First, some of our clients may associate the label of depression as having a lot of stigma. Stigma around mental health has been with us for a very long time, unfortunately, and it's really a barrier to making sure that we can provide care and address issues like depression in many people, not just people with aphasia.  Of course, the other thing about the label of depression is that some people just feel very disconnected from that label. They might hear depression and say, “Well, that's not me, I don't really feel sad.” But again, as we talked a little bit ago about those features and symptoms of depression, it's not necessarily just a sadness, it's about mood and so many other things that go with depression. It can be helpful to talk about those specific symptoms instead of just the label itself.    I wanted to throw this in there too, sometimes I've been asked this by a number of clinicians, “How do I tell the difference between depression and grief?” The short answer is that grief doesn't come with feelings of worthlessness or guilt or shame. It's not the turned-inward type of experience, whereas depression can be turned inward. Ultimately speech-language pathologists do not need to feel like they need to be mind-reader's; they do not need to feel like, “I am not a mental health expert, so therefore I cannot ask.” We can ask about depression and depressive symptoms. We can ask ourselves, “Does this person's mood appear to influence their everyday life or their recovery?” That might be the thing that will push us forward to ask a little bit more about what their experiences are like. Helpfully, there are a couple of screening tools that are really useful for clinicians, regardless of type of clinician. One is the Patient Health Questionnaire. It's a depression scale, vaguely named. It's also called the PHQ. The PHQ is a nine, or there's also an eight, item version. They're very simple scales. They've been developed for clinical populations, so the phrasing is quite short and straightforward. They use a Likert scale and they're very well validated screening tools that are also free. I believe we're going to have the pdf of the PHQ-9, which is nine items scale, in the Show Notes.    Janet: Right   Rebecca:  Great. Another scale that's been developed specifically for aphasia, though, it's really addressing caregivers or other proxy reporters, is the Stroke Aphasic Depression Questionnaire, or the SADQ, and it's available also for free. There are a couple of different versions. Again, that's been created for people with aphasia in mind, specifically their caregivers. So that's really helpful tools. In Short, these are great tools to use, and just give us a little more information as we're having a conversation about depression. They then give us some ideas about what next steps to take, including referrals that we might be thinking about.    Janet: Rebecca, those are excellent ideas. And indeed, those two resources you mentioned will be in our show notes. You speak about depression in patients with aphasia, but I believe that depression also affects the care partners of a person with aphasia. What do you see is the role of a clinician in recognizing depression in a care partner?    Rebecca: This is really, unfortunately, true. Depression is experienced by caregivers, including stroke caregivers and aphasia caregivers, and depression symptoms align, and maybe not surprisingly, with the degree of caregiving effort that's required by the family members. In other words, caregiver depression, can be higher when caregivers are working with a loved one who has more severe functional impairment. Here are even more sobering statistics. There was a study conducted, it's a few years back, about caregiving adults, ages 66 and up, so it's a lot of our clients, family members, and spouses, etc. Those caregivers who reported mental or emotional strain had a 63% increase in mortality risk compared to caregivers who did not report strain. That's a really shocking and sobering to think about. The takeaway here is caregiving burden, as it's often called, that s just a very, very real problem with us. Given that caregivers are such an important part of our client's recovery, their health and well-being are just incredibly important. So how can we support them? They're not our primary concern, because our client is, so what do we do? What do we do for caregivers to support them? Of course, we can ask how they're doing, certainly. Then we can also provide some support resources, support groups, counseling services, and the fact that we are doing much more online now has opened up opportunities for both caregivers and clients to participate in lots of different ways, to connect virtually, and so that's great.    Another really great tool that can be used is called the Caregiver Questionnaire. It's a questionnaire that has 17 items and was developed by the American Medical Association. It just goes through a listing of common caregiver experiences that can really be illuminating for caregivers. I've given this questionnaire to caregivers in different contexts, including in caregiver support groups. What I hear from caregivers, once they go through those 17 questions, is often they're surprised. They're often not thinking a lot about how they're doing themselves, because they're very focused on supporting their loved one. It can be really illuminating for them to answer the questions and realize, “Wow, I am really fatigued I'm really tired. And maybe I need some extra support”. What I sometimes recommend to clinicians is having this questionnaire on hand and providing it to caregivers while you're working with the client, and then maybe checking in at the end of the session to say, “You know, how was that for you?” And it's an opportunity, again, to provide some support resources that they can explore on their own. I think it's a really handy way to just shine a light for caregivers, saying, ”Hey you're doing a lot, we recognize that and we know you need support, too.”   Janet:  I think that's very important. It reminds me of the message you see on the airlines, you know, put your own oxygen mask on first, so that you're better able to help the other people. If you're a caregiver, you must take care of yourself, and we must help the caregivers take care of themselves so that they can better care for our patients with aphasia.    Rebecca: Oh, my gosh, so true.   Janet:  Depression typically does not appear by itself. You've alluded to that and mentioned that earlier. In your experience and investigation. How does depression interact with coping skills, resilience or motivation? Are there other interactions that we may see in persons with aphasia?    Rebecca: Oh, my gosh, depression, part of the reason that I studied depression, among other things, is that it's a really interesting experience. It's part of a grouping of some biophysiological processes that are so intimately linked together. I hope you don't mind if I geek out a little bit here.   Janet: Geek away   Rebecca: Geek away - All right. We know that when we perceive something stressful, like, let's say we're near a potentially dangerous animal or something like that, it's classic example. It triggers systems in our body that helps us respond, right, we've heard of the fight or flight response, where our adrenaline system jacks up so that we can move quickly, right or get away from the danger, or if we have to, fight it off. Then once the danger is gone, our body goes back to its normal functioning state, the adrenal system stops pumping out adrenaline and our heart rate slows to a normal rate, all that good stuff, right? So of course, our body does pretty much the same thing when we're not in danger, per se, but we are experiencing or we perceive stress; that could be public speaking for some, or a big job interview. Then thinking about people with aphasia, maybe it's really stressful to make that phone call to somebody, even someone they know well. They don't feel confident about their communication ability, and that can be incredibly stressful. Even though it's not danger, it still can kick our body's stress systems into gear, activating that adrenal response, etc. Here's the thing, though, if our body is entering that stress state pretty regularly, it gets regularly flooded with these stress biochemicals that can impact multiple systems. We can handle those biochemicals, we were built to handle those biochemicals. But we weren't really built to handle them all the time, or often over a long period of time. If those biochemicals are circulating in our blood, they can really have a damaging effect on our body, and they have a damaging effect on parts of the brain, that are really important for us as speech language pathologists thinking about treatment, right? So those biochemicals, and cortisol is among them, can diminish functioning of regions of the brain that we need for things like attention and memory, things that are really important for learning, right? What do we do in treatment - we learn. At the same time, these biochemicals can increase parts of the brain, like the amygdala, that are really central for emotion. In other words, if we're experiencing persisting stress over a period of time, we may have impairments in memory and focus to a degree, and we may also experience depression, anxiety, and other mental health challenges. I got really, really interested in stress and depression a few years ago, and as you mentioned at the beginning, we created a scale for chronic stress for people with aphasia. Using that scale we found, just as we would in the general population, that there are very close associations between reports of perceived chronic stress and reports of depressive symptoms. The bottom line is that chronic stress is significantly connected to depression, and it's significantly experienced by our clients with aphasia.   You asked about coping skills and resilience and that's another area that I've been really, really interested in. We know that there's an association between depression and resilience, or how people cope with stress. As resilience goes up, depression tends to go down. But we also have seen that this relationship is more complex than I anticipated. We are currently validating a scale of resilience for aphasia. We really want to understand better how resilience and depression and other mental health challenges fit together, and then how we address them.   Janet:  I think that's very important work because we're, when we engage on the therapeutic endeavor, when we begin treatment, it is a partnership. And both the clinician and the patient with aphasia, but also the caregiver, we have to be in there engaged in that process and moving forward to achieve whatever communication goals we have in mind for the patient. If a patient is not engaged because of low coping skills or low resilience, because of depression, that can certainly affect our treatment,   Rebecca: Agreed. It's things that we don't really understand. I mean, we understand to a degree, for sure, but I think with some time and some additional research, we'll be able to understand much more clearly how depression and resilience impact treatment, and also how we can capitalize on resilience and build it. I'm looking forward to uncovering some of these associations and understanding them better.    Janet: Oh, I look forward to reading your work on that. I want to ask you now the next logical and perhaps obvious question, which is how may depression experienced by a person with aphasia adversely affect the treatment, as well as the quality of life in that person, and with the person's caregivers?   Rebecca: We've talked about people who have experienced depression in one way or another, and depression is really mean. It is really a mean, mean process, that can sap our interests in things that we like to do and screw up our sleep and our appetite. It impacts others around us, of course, but yes, absolutely, depression can dampen motivation. That's one of its features, it can dampen motivation to get out of the house, or for our clients with aphasia, it can diminish how much initiative they want to take with activities, especially social interactions that really help with language function and recovery. It may diminish their initiative to seek support or to reach out and start speech therapy. Then, even when a person has decided to actively engage in therapy, depression may also limit how much he or she can take away from that therapy experience to a degree, given that it's harder to attend to things, it's harder to concentrate, it's harder to remember, when you are also struggling with depression. Then it's also that all of those things that contribute to how well we can engage in treatment and adhere to treatment recommendations. We need a level of motivation and initiative and energy to tackle assignments that our therapists might have given us to work on in between our sessions. There are just multiple ways that depression could influence treatment, either through those diminished cognitive processes, or the impact on engagement, and adherence. There are just a lot of questions that we have, still about these impacts on treatment, and how they influence the outcomes of treatment.    Janet: One of the things we've observed in some work we've done recently is that people talk a lot about motivation, or resilience or coping, but people haven't yet figured out what that means or how to identify it. I'm very glad that you're doing some of this work to help us understand how we can best approach the treatment effort and really assure maximum engagement of the patients to achieve the goals that we want to achieve.   Rebecca: It is really interesting. There is some really interesting work going on in some other allied health disciplines that is, I think, helping us to pave the way in thinking about how to ask these questions about engagement. It's for our clients as well. I am excited to move forward on that.    Janet: You're right about that! Speech-language pathologists are by nature, compassionate individuals, and would be responsive to a person with aphasia or a care partner who seems to show depression. What guidance can you offer for clinicians as they plan and implement a rehab program for a person with aphasia, who shows signs of depression?    Rebecca: Oh, first of all, Janet, I agree. Speech-language pathologists are such a big-hearted bunch and that is just a real plus for our clients. There are a number of things that we can do to consider depression and treatment planning. In addition to being aware of the impact of depression, and those engagement and motivation issues, the cognitive issues, and the screening that we already talked about, we of course, can make appropriate referrals. This can be easier for some clinicians and more difficult for others. Some clinicians who work in an environment like an acute care or rehab environment, may have access to a psychologist or social worker, rehab counselor, someone like that who can help step in and provide support or other resources. For other clinicians who work in outpatient settings, the best referral might be to the client's primary care physician. Unfortunately, as we know, there are just not enough mental health professionals with aphasia expertise; we need so many more of those. That's a whole other discussion, isn't it? The primary care physician and support groups can be some of the first people that we refer to, if we are working in an outpatient setting. In addition to those things we can also provide some information and training to family members, and our colleagues and our clinical teams about supportive communication techniques. Interestingly, people with aphasia have talked about how interacting with people that know a little bit about aphasia and know how to support communication really can not only facilitate the conversation, but also help improve their mood, and give them a little boost. They also talk about how important it is to both acknowledge their experiences and perspectives and struggles, and to have at the same time, a positive outlook, to use humor, to celebrate goals. All of those things have been things that people with aphasia have talked about as elements that really help in working with clinicians and others for that matter.    Another thing that has come up, and you and I have talked about this a little bit, is also about the tremendous impact of mental health challenges for people with aphasia. We talked a bit ago about the very high incidence of depression in aphasia. And so, people with aphasia have said in previous work that they really wanted more information about low mood and changes that can come with stroke, around mood and mental health, and wanted an open forum to talk about that, and continue those conversations with caregivers as well. That open discussion about depression, about other kinds of mental health struggles, can really help normalize it, help destigmatize it so that we can address it more readily.    Janet: That makes sense. And you know, one of the key points I heard you just say is that, as a clinician, it's important for us to be aware of the community resources that are around us, whether they're specific individuals like neuropsychologists or mental health workers, or support groups or community groups. Bearing that in mind that we're not alone, as clinicians working with patients with aphasia, we have a whole group of people who can contribute to this rehabilitation effort.    Rebecca: Absolutely. And I was going to add, in addition to the myriad of people that can be around and supporting people with aphasia who are struggling with mood issues and other mental health challenges, support groups are really amazing. I would say if I gave a couple of tips for clinicians, but I had three things that I was thinking of, that we can really encourage for our clients, and one is to really seek out those support groups and other opportunities for connection with each other. I mean, I think we all know that groups can be so amazingly effective at not only providing some opportunities for social connection, but also that emotional support, and kind of perspective-checking opportunities for our clients can realize, “Oh, I'm not alone, others are also struggling in a similar way.” I'm the biggest cheerleader for support groups, as I think we all are,    This is one of those broken record things. Exercise is another incredibly, useful tool. We all know, of course, that exercise is good for our health and our cardiovascular functioning, all that good stuff. But it also so helpful in improving mood and cognitive functioning. Getting outside and moving around is just so important. There is just scads of research across many health disciplines that talks about this and reminds us about the importance of exercise.    Here's the other thing that I think is really cool to suggest to clients. And that is, in simple terms, do more of what you like to do. There's been some work around behavioral treatment approaches for stroke survivors, including those with aphasia, using a framework called behavioral activation. Thomas and colleagues in the UK have done a little bit of work around this. The basic notion is that by doing more of what you like to do, provided it's healthy and not detrimental, of course, can really help improve mood. When we do things we enjoy, it releases endorphins, and it gives us some sense of satisfaction and well-being. That's exercise for some people, not for everybody. Other people may find doing creative things, or learning something new, or engaging in something that feels like it's contributing in some way. Those can all be things that can over time, help improve mood and outlook. This can be a little challenging for folks with aphasia; the things that they think about or reach for, or things they enjoy, are maybe no longer available to them because of their language and communication impairment, or other impairments that have come with stroke. So again, the support groups are so helpful. They can be places where people have an opportunity to learn about new activities or connect with opportunities that may fill that hole of things that they like to do, new things that they hadn't discovered before. I always have more plugs for support groups.   Janet: The things that you mentioned, they're simple, they're easy, but they're so powerful. Sometimes we forget that the simple things can often have the biggest change or make the biggest change, or the biggest difference for us. It's a good thing that you have been reminding us of those things today.    Rebecca: Simple things, and sometimes combinations like a couple of simple things together can make a huge impact.   Janet: As important as the treatment techniques are to address specific linguistic and communication goals, an individual's mental health state and their feelings of engagement with the clinician and the process are just as important, as we've mentioned several times today, What advice or suggestions or lessons learned, can you describe for our listeners that will help them become better clinicians, and address the whole person in aphasia therapy, including our role as clinicians in counseling, and I don't mean the professional counseling that is reserved for degreed mental health professionals. I mean the communication counseling and quality of life communication counseling.    Rebecca: Yeah, even though speech-language pathologists are not mental health experts, there really are a number of very simple counseling skills that can help connect with our client s and more fully understand how they're doing, where are their struggles are, how are they doing in terms of mental health. When we understand them more fully, what's important to them, what they're struggling with, then it's easier to build treatment plans that fit them as individuals. So, if I'm putting on my counseling hat, I have a couple of things that I would prioritize, I think I have five, five things that I would prioritize as a speech-language pathologist using some counseling skills.    Janet: I will count them.   Rebecca: The first one is really to consider their stage post event or post stroke. If the stroke or the event is new, we may be working more with the family; they may be in shock, they may be overwhelmed and struggling to take in the information that we and our clinical team are providing to them. Those conversations differ tremendously from the conversations we might have with clients and families that are in the chronic stage, because they have a better sense of aphasia and of what it means for them, what their everyday needs are, etc. I think considering first of all, the stage post stroke or post event is really important.    The second thing I would say is to find empathy and unconditional positive regard. It is good to know that depression is complicated, and it can come with emotions, a lot of different emotions and experiences from anger and frustration and shame, and so sometimes our conversations around depression can be uncomfortable. I would say, approach these conversations in an open and honest way about the client's challenges and maintain that unconditional positive regard even when we're feeling that discomfort ourselves. If they are angry and frustrated, we also may feel angry and frustrated or defensive or something else that doesn't feel very good as clinicians, or for anybody for that matter. Just remembering that unconditional positive regard, that we really all want the same thing. We want improvement. We want improvements in life and to face things like depression and find some answers that will really help push clients forward.    The third thing that I would say is giving clients and family members our full attention and listen really actively and carefully. Sometimes this can be just an extra 30 seconds, an extra 60 seconds of listening using some reflective techniques that can really provide some critical information about our client, their needs and priorities that we can use in treatment planning. At the same time, this act of listening very deeply, and reflectively can help build our connection with their client and that's going to help promote engagement, adherence, and trust, which is just so essential for the therapeutic alliance.    The fourth thing I would say is communicate multi-modally. I would say this not just for clients, but for family members as well. I myself have been the caregiver in situations where a clinician, never an SLP I will say, has come in and talked to a loved one and it was wasted words and time because nobody could take in that information. It was feeling overwhelmed and that that information might have come in as just some noise; maybe we remember one or two words from it and couldn't take the rest of it away, just given everything else that we were processing in that moment. I always say, never just say something, say it and write it or diagram it. This is just again, so important with clients and families who are stressed, who are depressed or anxious in some way. It is just so hard to remember when we're feeling overwhelmed. We can really support our clients and families by communicating in a multi-modal way. Even almost as important as summarizing what we've said and providing information again, I had a caregiver once say never tell us more than three things at once, because the fourth thing is going to be lost. I took that to heart; I understand that that makes perfect sense. And of course, providing a lot of opportunities for questions is helpful. That number four had a lot of pieces to it.    Here's number five, and this is really obvious, developing mutual goals with our client and revisiting them. Sometimes when our client is struggling with depression, we might find their treatment plan seemed like a great idea, seemed like a great fit for our client, and just falls flat. If our client is really struggling to concentrate or engage in an activity because of depression, it just makes sense to stop and revisit those goals and make sure they really line up with the client's interests and priorities, but also how they're doing and how they're able to engage given everything else that's going on - mental health-wise and otherwise.    Janet: Those are five excellent tips, Rebecca, excellent. And again, they're not difficult things to do, but they're so important, especially if you do all five of them together. I think our listeners are going to be quite pleased to learn about these five ideas that you have.    Depression experienced by persons with aphasia is not new, we've talked about this earlier, certainly as long as there has been aphasia, there have been people with aphasia and depression. But although it's not new, it has not been well recognized or really well studied, as you mentioned earlier on. During the past year, as a result of changes due to the pandemic, such as the stay-at-home orders, limitations on in-person activities, and the increase in virtual care, I believe depression and associated mental health and self-care concerns have increased and have come to the forefront of our thinking. Have you found this to be the case?   Rebecca: It's interesting. We are in the midst of a study right now, that's looking at how our research participants are doing during the pandemic as compared to pre-COVID, pre-pandemic. We're not done, we're midway through, but so far, we're seeing some really interesting challenges that people are reporting with everyday functioning during the pandemic, which it doesn't surprise us, of course, we're all struggling with functioning, I think, during the pandemic. We're not necessarily seeing greater levels of stress for the group we've done so far. Some people are reporting more stress, and some people are reporting less, which is fascinating. I'm going to give you some examples. Some people have said that they're not really that bothered by not being able to leave the house. Then other people are talking about how they're not able to do the things that they've always done, and that's been really difficult and stressful for them. So clearly, there's a lot of variety of experiences that we've heard so far. I'm really looking forward to finishing up that study and just looking at all the data together. Maybe the next time we talk we'll have some better news or a clearer picture about what people's experiences are like.    Janet: I'll look forward to hearing about that.    Rebeca: Separately, a couple of months ago, we chatted with our friends with aphasia and just asked, “Hey, what's been helping you during these lock downs, during this time of isolation?” And here's what they said: they said things like games and puzzles and dominoes were helping; listening to music every day. One person found brain teaser books were helpful and fun right now; several people were cheering for support groups that they were attending online; playing with pets; connecting with family over FaceTime. One person talked about chair yoga. Those are the things that our friends with aphasia are doing that they say are really helping.    I think we're all thinking about self-care right now. It's just so important, of course exercise and getting outside and learning something new. I think we've all heard of countless people that have learned to bake bread this year, me among them. Taking care of things like a new plant, and then just finding ways to connect with each other, though a little bit different than we were doing it before.    Janet: That is so true. I think we've all been finding those new ways and new things and new ways of connecting with people. Rebecca, you've given us much to think about today. Depression may not always be easy to recognize in an individual, and certainly its management is multifaceted. As we draw our conversation to a close, what are some words of wisdom that you have to offer to our listeners who interact with persons with aphasia every day? And who may be wondering, “How do I start a conversation about depression with my clients, or my clients’ caregivers?”   Rebecca: I would say first, be yourself, be genuine. When we are able to genuinely connect with our clients and their families, it really does strengthen the trust, and build our relationship for some good clinical work together. Then ask about depressive symptoms, as we've talked about before, and communicating openly about depression; not something that we should, you know, hide away, but actually discuss and regularly check in on, as well as providing some resources and support for what to do when someone's feeling depressed or struggling with mental health. Then listening fully and acknowledging the experiences of our client, the good stuff, the difficult stuff, all of it. They're really the experts on life with aphasia and they are such a critical part of our clinical decision making. Then keeping our eye on the literature as there is more clinical research on depression, and other psychological challenges in aphasia right now than I think ever before, which is incredibly exciting. So just keep an eye on that. And then I think this is a really important one - take care of yourself. Clinicians working with people with communication disorders are also experiencing depression. It can be a lot over time, and no one can be a great clinician if their own health, their own well-being is compromised, so do what you can to take care of yourself. Again, simple things, several simple things we can do to just make sure we're our most healthy and going to be the best supporters for our clients and their families.    Janet: Those are some very, very good suggestions. If I'm right, you have a paper coming out in Perspectives soon, about counseling skills, is that correct?    Rebecca: Yeah, there should be a paper coming out soon about counseling skills, and also about stages using those skills, depending on the stages post event or post stroke, hopefully, that'll be coming out really soon.    Janet: This is Perspectives for the Special Interest Groups within the American Speech-Language-Hearing Association. I have to say, I remember, oh gosh, many, many years ago, I wrote a paper for Perspectives on depression and aphasia, and at that time, there was not very much written about it; people were thinking a little bit more about quality of life. As I reread that paper before talking to you today, I found myself thinking how much more information is available now, how much more in the forefront is the topic of depression, and mental health and psychosocial skills, and how pleased I am that there are so many people who are really recognizing the importance of having these conversations with our clients and caregivers.   Rebecca:  I'm so glad that there's more available now, but I have to say thank you, Janet, for blazing that trail those years ago, you have been an inspiration clearly and I'm glad that we are picking up the pace on these important topics.   Janet:  And you indeed are. 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, Rebecca Hunting Pompon, for sharing her knowledge, wisdom, experience and guidance about this most important topic, the effect depression can have on persons with aphasia, and their care partners.    You can find references and links and the Show Notes from today's podcast interview with Rebecca, at Aphasia Access under the Resources tab on the homepage.   On behalf of Aphasia Access, we thank you for listening to this episode of The Aphasia Access Conversations Podcast. For more information on Aphasia Access, and to access our growing library of materials, please go to www.aphasiaaccess.org. If you have an idea for a future podcast topic, please email us at info@aphasiaaccess.org. Thank you again for your ongoing support of Aphasia Access.   Links and social media Lab website: UDAROLab.com Facebook: “UD Aphasia & Rehabilitation Outcomes Lab” AMA Caregiver Self Assessment Questionnaire (free pdfs; 5 languages): https://www.healthinaging.org/tools-and-tips/caregiver-self-assessment-questionnaire   Citations Modified Perceived Stress Scale: Hunting Pompon, R., Amtmann, D., Bombardier, C., and Kendall, D. (2018). Modification and validation of a measure of chronic stress for people with aphasia. Journal of Speech, Language, and Hearing Research, 61, 2934-2949. doi.org/10.1044/2018_JSLHR-L-18-0173   Patient Health Questionnaire depression scale (PHQ)  PHQ9 Copyright © Pfizer Inc. All rights reserved. Reproduced with permission. PRIME-MD ® is a trademark of Pfizer Inc. (open access)   Stroke Aphasic Depression Questionnaire (SAD-Q) https://www.nottingham.ac.uk/medicine/about/rehabilitationageing/publishedassessments.aspx  

During this episode, Jerry Hoepner, a faculty member in the department of Communication Sciences and Disorders at the University of Wisconsin – Eau Claire, has a conversation with Dr. Gayle DeDe about the upcoming Aphasia Access Leadership Summit.  Take aways: Get to know the back story about Gayle’s LPAA mentors.  Learn how the planning committee strategically distributed the schedule to reduce Zoom fatigue and to retain as much of the close knit, reunion feel that past Summit attendees love as possible.  Hear a sneak peek about the Gathertown app, which will be used in our social get togethers at the summit. Make your own avatar (MYOA).  Shout out to members of the planning committee! Multiple opportunities to learn about telepractice.  New to this year’s summit! Accepted oral talks.  Hear about the great lineup of invited speakers. Check out the Aphasia Access Facebook page and Twitter feed! Interview transcript:  Jerry Hoepner: Hi Gayle, nice to see you today. Gayle DeDe: Thank you, nice to see you too. Jerry: Long time, no talk. It's been at least two days. Well, I’m really excited to have a conversation with you about the upcoming Leadership Summit and kind of what we can expect when it comes to the summit. Before we jump into that conversation, can we start out just with a kind of a traditional question of mine just asking about your influences and your mentors in the life participation approach. Gayle: Sure. It's hard because there's just too many people to name them all. I have been raised academically and clinically by a village. In the traditional sense, so I would say that the first sort of really important mentorship that wasn't exactly about the life participation approach, but is related, I think. It was my undergraduate thesis mentors, so this is going back many, many years when I was in psychology and linguistics and I was very interested in those topics and I was doing a thesis with someone who is in the department of communication sciences and disorders, at my university. And as part of that I was able to go and observe treatment sessions, with one of my mentors, who was a speech pathologist and I had this epiphany, lightbulb moment; that this work that I really enjoyed That was really interesting to me from a theoretical perspective could have an influence on real life people and that that was what I wanted, but it wasn't enough to be purely theoretical that I wanted to be able to take what I was doing and apply it to people. Jerry:  That's a great epiphany and definitely a life participation moment for sure. Gayle: um and then my PhD mentors are both, you know, strongly rooted in the cycle in mystic domain Gloria Waters and David Kaplan but also were really good about thinking clinically and thinking about relationships between theory and practice, and so I think that also had a really significant impact on me and how I think about clinic in general um and then. Liz Hoover actually hired me for my clinical fellowship is an exciting side note, but she when she came to Boston University. They started the official resource center when I was still in graduate school at BU, and so I was able to run some groups in that context and have my first real experiences with aphasia groups run within a life participation approach. And that was very impactful I ended up sort of stepping back from that to do more psycholinguistically oriented research for several years. At the University of Arizona, while I was there, I got to be pretty good friends with Audrey Holland, who is a professor emeritus at University of Arizona, and she helped me in a million different ways and mentored me in a million different ways. But one of those was when I was trying to think about where I really wanted to go with my career trying to decide if I was in the kind of position I wanted for the long term. She was really encouraging and help me think through what it was, I really wanted and without that I don't know that I would have been able to have been in the mental space to make the move from University of Arizona to Temple where I'm able to be the director of an Aphasia Center. And then the last group, I would mention is just the members of the Aphasia Community at Temple have had an enormous impact on my life as a researcher as a clinician and just as a human. Jerry: Yeah, what a what a great bridge from that theoretical background too strong applications with Audrey and Liz's guidance. And I 100% agree and I've heard so many aphasiologists talk about this that the people within our groups are our best teachers and really. I just continue to learn every day when I interact with my group members as well, so that's really that's really outstanding and valuable so appreciate that. Um, so thinking about that you know as you talked about what you wanted to do, how has the LPAA framework kind of influenced your research you're teaching your clinical work? I know that's a big question. Gayle: Indeed, yes, so in making the transition for me part of what I wanted was to be able to do clinic for clinics sake. In the kind of track I was on previously it would have it felt like it would be difficult for me to do clinic outside of a research setting and I wanted to be able to tailor clinic to the people I was working with and you know, with groups, even though you're in a group setting like we add groups, depending on what our group members expressed interest in, so I felt like I could actually do that in the setting I'm in now um and then just More generally, I have found that when I'm thinking about clinic I start at the end. When I'm talking with students, the question is always you know where does this person want to get to themselves and what can we do, based on what we know of the evidence to help them get there, how are we going to implement treatment protocols to get them to where they want to be, or as close to their as where they want to be as we can. Jerry: Outstanding I believe another very fine aphasiologist once said, begin with the end in mind, Aura Kagan has had that influence on all of us so. Gayle: Yes indeed, and then from Audrey, I think that trying to focus on what people with aphasia can do not just on what they can't do, focusing on strengths rather than weaknesses. Jerry: Yeah, what terrific guidance and a terrific way to spring off into our conversation about the aphasia access leadership summit coming up pretty soon in April; nice to see it coming to fruition for sure. Gayle: Wow, I'm very excited. Jerry: Gayle, I know you in the planning committee have done a lot of planning to make this virtual event feel like a get together, so it feels as close knit and interactive as possible. So, many past summit attendees see the summit as the kin to a family reunion type of feeling right about the steps the team has taken to retain that feeling. Gayle: Sure, first of all I want to point out that you are part of this team. You and I are the co-chairs of the summit. So, we have done a lot to try to think about how to keep a more community-based feeling with the summit, so one thing is that we've planned synchronous talks where there's opportunities to ask questions online, but also if people aren't able to attend the synchronous top. They can watch some of the talks after the fact, and then communicate by discussion board so there's still the opportunity to interact and then we've planned purposefully to have some time for unstructured informal conversation so we're using a platform called Gathertown, which essentially is like a little like a big Zoom room, with little separate areas in it and you can enter into the gather town space, then you can see who is around, and you can have a little avatar that you can move to join conversations  with people you know and to join different conversations to see your friends and be able to catch up so it's not you know it's better than live cocktail party and that there's not so much background noise. But there's still that feel of you can see someone across the room who you haven't seen for a long time and go say hi to them. So, that's pretty exciting, so we have a BYOB cocktail party scheduled for Thursday night and then we'll also be using Gathertown during the day on Friday and then also at the end of the day, on Saturday so as people are on their way out, they can chat with their friends and make new friends. Jerry: Terrific so with my little avatar I could walk over to Audrey Holland and have a conversation about her mentoring, have you those kinds of things that'd be fabulous. I like the idea, you know of having walking around in this little blue avatar, right? just like the movie. Gayle: Just like it. Jerry: Just kidding. Um, terrific so that sounds like we've put a lot of thought into just achieving that kind of close-knit feel and trying not to get overwhelmed with all of the zoom time and creative ways to make that happen. Gayle: yeah. Jerry: Terrific! Hey, you know, before we jump any further how about we just give a big shout out to our planning committee for all of the time that they spent contributing ideas to that you know developing an online conference that really does facilitate that close knit feel and for all their work reviewing a lot of proposals so who should we shout out to. Gayle: And so, in alphabetical order and we had Jamie Azios, Mary Beth Clark, Will Evans, Katarina Haley, Trish Hambridge, Nidhi Mahendra, Maria Munoz, Catherine Off,  Andrea Ruelling, and Debbie Yones were all on our committee and gave really fantastic feedback from lots of different perspectives. Jerry: Absolutely, maybe a virtual round of applause, here we don't want to anyone's ear drums on the podcast but yeah, thank them so much for the work that contributed for sure. Alright, so we know that sitting in chairs and staring at a screen all day long can really get to be exhausting. I think we've all pretty much learned that lesson, this year, if nothing else. So, what kinds of things, specifically, have you done to break up the schedule, so that attendees stay connected and kind of reduce that zoom fatigue. Gayle: Yeah, so we did a couple different things, first of all, we spread out talks across the week, so the way the conference is structured they'll be for a full week. Monday, Tuesday, Wednesday, Thursday there'll be talks from 12:00 pm to 1:15 pm (CST) every day those will be synchronous so attendees can watch them live (Note all times are Central time zone). And if that doesn't work with your schedule, you can watch it later and then like I said communicate with the speakers using discussion boards. For Friday and Saturday, we tried to keep the days relatively short, and we also built in some different like what we call mind and body breaks so, for example, Aimee Dietz’s group will be talking about yoga with people who have aphasia with her team and part of that will involve some demonstrations of aphasia friendly yoga So hopefully our attendees can get up and get moving a little. Jerry: Absolutely and nice to kind of get that midway stretch and still be learning, while we're stretching so that'll be really great. Gayle: Sure, so, in addition to the body and mind break Will Evans and his group will be talking about aphasia games for health which is a prototype for using games for people with aphasia feature friendly games so that's another way that we're going to be able to have sort of a less research heavy talk where you're still learning but it's you know a little calmer, maybe. Jerry: Sounds like fun, right? Gayle: Yes. Jerry: Well, obviously we wouldn't be having this conversation, the same way we're having it right now, if it weren't for COVID, right? Our world changed with the onset of COVID and there's a rapid shift to the virtual telerehab format. Can you share a little bit about who our invited are and how they're going to address those current issues? Gayle: Yeah, we have a couple of different ways, so, first of all, on Tuesday we're having a panel on telepractice for people with aphasia and what I'm particularly excited about there is that we have people who have been doing telepractice for quite a long time, like Judy Walker along with people who are relatively new to using telepractice, and then we also have two people with aphasia who will be on the panel as stakeholders to talk about their experiences of telepractice. Jerry: That's going to be terrific. Gayle: Yeah, and then another way that we're addressing this is by inviting Jane Marshall who's going to be talking about Eva Park for people who don't know Eva Park is a virtual world that was designed for people with aphasia in order to practice functional communication, you can hold groups there. It's a really interesting space and they've been working on Eva park for a very long time, so they've done a lot of work around how to work with people with aphasia in a virtual space so I'm also really excited to hear about that, and then we also have several poster sessions about the transition to tell a practice, including some about transitioning music groups which I am super excited about. Jerry: Agreed, sounds terrific well speaking of invited speakers how about a little bit of a at least a taste or an overview of what those invited speakers will discuss. Gayle: Yeah, so I mentioned a couple of them already and we also have Charles Ellis who's going to be talking about health care outcomes and health care disparities for people with aphasia which I'm really excited about. And then we're also having what we were informally calling the master class on aphasia groups. It's a panel conversation with people who are really just experts in running conversation groups, and they are going to be talking about various aspects of how groups are put together how you run them what kinds of things you're thinking about during group. And we sat in on some of the earliest planning meetings and I learned so much during just the planning meetings I'm ecstatic to hear what they have come up with in the time since so that's really exciting. Jerry: Agreed, and like you said they're reluctant to call themselves master clinicians but this is a unique opportunity to look over their shoulder. We get to see how they think, and why they do what they do so I agree it's going to be very exciting. Gayle: Yeah, and just thinking about you know the there's such a range and how we all implement groups it'll be really interesting to hear how different masters clinicians implement different concepts and I'm just I'm very excited. Then another really exciting thing on Saturday is we're going to have Karen Sage talking about therapeutic alliance with people who have aphasia and then, following on the tales of that Katarina Haley will be talking about collaborative goal setting for people with aphasia so really focusing on how we can work together with people who have aphasia to maximize treatment outcomes. Jerry: Absolutely, that's going to be just a terrific pairing of those two ago so well together outstanding. Right? Well, this is the first year that we will have accepted proposals really exceptional proposals as oral presentations. Can you tell us a little bit about the accepted oral presentations? Gayle: Sure, so we have three accepted talks I should mention here that we had many, many more submissions for oral talks than we could possibly accommodate so we had to say no to a lot of really fantastic talks. Jerry: There were several and all of them were really terrific so. Gayle: Yeah, it was we had to make some painful choices. And so, the three talks that we have were universally acclaimed by the reviewers and also have. A lot of relevance for both research and clinical perspectives so Marion Leaman and Brent Archer are going to be talking about empowering people with aphasia to initiate topics of conversation. There will also be a talk by Jamie Azios, Jamie Lee, and Roberta Elman about running virtual book groups and how to encourage engagement in virtual book groups. And then finally Jackie Hinckley and Janet Patterson are going to be presenting results of a study, where people with aphasia were randomly assigned to receive impairment or activity focused treatments and presenting results, about which type of treatment seem to have the best effects. Well, I'm really excited for all of those talks. Jerry: Absolutely, that's super exciting. All right, well Okay, you know that's right, we had a lot of proposals, this year, can you talk a little bit about the different formats and how we try to make them as interactive as possible. Gayle: Yeah, absolutely so I mentioned a little bit already about the invited talks and the accepted talks so that will be one format. And they're also going to be Brag n’ Steals as is the tradition for the summit and those will all be synchronous live. And then we're also having just one poster session and we're going to be obviously virtual poster sessions are very different from live poster sessions. So, we are developing a format, where each poster will be in its own Zoom room and attendees can basically drop in on the different Zoom rooms that they're interested in and hear you know talk with. The author or authors about the contents of the poster they can have a run through like you would typically have and then our plan is also to make the poster overall the big poster accessible in a PDF format. For attendees so you can sort of get the big picture, but you can also go into the Zoom room and talk with the authors so we're trying to keep that interactivity that is so great about poster sessions and again like with Gathertown, with the added benefit of less background noise, which is something I always think of as a speech pathologist when I'm in a poster session, then we should loop all of our posters to. Jerry: agree, no big poster hall with people shouting next you and so no vocal trauma or less trauma. And we're putting together some guidelines that will send out to people who are presenting posters, so that they have a clear idea of what that will look like and how to kind of maximize the way that they deliver that so yeah excellent okay. So, it's sort of a tradition that Audrey Holland, at the end of the conference wraps things up provide some takeaways and a conclusion at the end of the summit that's still going to happen this year. Gayle: It is and I'm very excited. Yes, I'm really excited to hear from Audrey I think it's always great to hear what she's taken away from the conference so I'm excited to hear that again. Jerry: Excellent, and I assume we'll be having awards for the Audrey Holland award and the Innovator award and those types of things that will happen sometime during the conference as well. Gayle: Yes, that will be happening Friday afternoon at the end of the day, on Friday and I'm actually also really excited to announce that we will be having a new award, which is for outstanding student presentation. Jerry: Outstanding! I'm really excited about that, you know I love student learning so terrific well that's just sounds like a terrific opportunity to reengage with all of our life participation colleagues and hopefully, retain as much of that close knit reunion feel as we can. Anything else out there that we should know about, as we look forward to the summit? Gayle: Just that I'm really excited for it, and I hope lots of people will register and will really take advantage of all the different ways to interact. Jerry: Agreed. So excited for that and I’m sure we'll have a busy few weeks leading up to the summit so I will definitely see you again soon. Okay, well, thank you Gayle for joining us and really appreciate the conversation.  Gayle: Thanks for having me. Jerry:  Absolutely, on behalf of Aphasia Access we want to thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and for access to our growing library of materials go to www.aphasiaaccess.org if you have an idea for a future podcast series or a topic email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.

During this episode, Dr. Janet Patterson, Chief of the Audiology & Speech-Language Pathology Service at the VA Northern California Health Care System talks with Dr. Jerry Hoepner, Professor in the Department of Communication Sciences and Disorders, University of Wisconsin Eau Claire, and Marybeth Clark, M.S., speech-language pathologist at the Mayo Clinic in Eau Claire, about improving the lives of people with aphasia, both indoors and outdoors, through the Chippewa Valley Aphasia Camp. These Show Notes capture the experiences, recollections and wisdom of Marybeth and Jerry at camp. In today’s episode you will discover the philosophy of “Challenge by Choice” as a path to personal change and growth hear how activities that reveal competencies in persons with aphasia lead to transformations in many people – students, Aphasia Camp staff, individuals in the surrounding community, and of course the persons with aphasia themselves hear how the phrase, “We are all in this this together” takes on new meaning in the real life daily activities of Aphasia Camp. Dr. Janet Patterson. In 1997, with colleagues Tom Hintgen and Tina Radichel, Marybeth founded the Chippewa Valley Aphasia Group. Shortly after that Jerry started volunteering with the group and a beautiful partnership began. One of the outcomes of this partnership is the Chippewa Valley Aphasia Camp, which started in 2004. Tom Sather, Michelle Knudsen, and Carin Keyes are also part of the Chippewa Valley Aphasia Camp.  The Chippewa Valley Aphasia Camp meets at Camp Manitou near New Auburn WI, and is a three-day retreat offering people with aphasia and their family members, activities and resources to increase social interaction and to facilitate communication success in daily life. Faculty and students from the University of Wisconsin at Eau Claire partner with staff from the Mayo Clinic Health System to offer communication activities nestled inside outdoor activities. This community partnership provides support for people with aphasia while providing a firsthand field experience for communication sciences and disorders students. Janet. Welcome Marybeth and Jerry. The idea of experiencing communication in an outdoor environment is appealing to me, and I hope also to our listeners. I have several questions for you today as we explore your work in aphasia camp. Marybeth, let me start by saying how sorry I am that Aphasia Camp had to be canceled in 2020, and I hope it will be back in business, if not this year, then hopefully next year. Thinking back to 2004, how did the Chippewa Valley Aphasia Camp grow from your work with the aphasia group? What led you and your colleagues to envision a clinic camp program? Marybeth Clark. Janet, back in 2004, it was our dream to be able to create a peaceful, relaxing retreat for individuals with aphasia and their significant others. Ultimately, we were thinking about providing the optimal aphasia friendly atmosphere. We were very much influenced by the Life Participation Approach to Aphasia. Tom Hintgen and I had traveled up to see the Aphasia Institute, the Pat Arato Aphasia Center, and we were also influenced by Lynn Fox's approach to conversational intervention. Those are the key drivers in our overall thinking of developing this relaxing weekend retreat. We were looking to create a participation-focused weekend experience that fosters socialization, and meaningful, authentic activities, within the backdrop of conversation, and at the same time instilling a sense of confidence within the activity participation, fostering a hopefulness, and promoting a sense of wellbeing. Jerry has heard me say this a number of times, but I was really fortunate when I was a young girl to work at Camp Manitou as a counselor, and then as a program director for seven years. Those experiences at camp were some of the most memorable experiences that I've had over my lifetime and I'm still in contact with those friends and counselors, and people I worked with. We talked about different venues and it all came back to, why not think about the YMCA Camp Manitou? It's a peaceful, relaxing atmosphere that has the opportunities for activity, and relationship building. It’s quiet, serene, nestled in the woods, and yet has that rustic environment to it where people share cabins, there’s a main lodge, there's a dining hall, etc. So, it just seemed to be the perfect, or at least in my mind, the perfect backdrop to provide this type of a weekend retreat. Janet. It sounds beautiful. I can visualize it up in the northern woods. Jerry, what attracted you to begin volunteering in the Aphasia Camp, and kept you returning year after year? Dr. Jerry Hoepner. As you said, in your introduction, Janet, I started volunteering with the Chippewa Valley Aphasia Group shortly after its inception and had the honor and the privilege of being mentored by Marybeth and by Tom Hintgen. They were really well versed in life participation-based aphasia interventions before that was even really a thing. They would bring in speakers, so I got to see John Lyons, I got to do an introduction for John Lyons. I got to see Audrey Holland. You know, when I was just in my formative years, they took us on a trip to Speaking Out the very first Speaking Out in Chicago, and I got to see people like Roberta Elman and Aura Kagan and Ellen Bernstein-Ellis. I was just hooked. Fast forward seven years, and Marybeth and Tom came back from Pat Arato, and Marybeth said, “We're going to do a camp”, and I don't think there was ever any question for Tom Sather and I - we were just in. With that great mentorship and the opportunity to work alongside them all those years, it was just an easy decision. I grew up camping and going to camp and fishing all summer long with my dad and my mom, so it just made a perfect fit. What keeps me going, I think, is obviously the campers and the stories that we have about campers, the students and the outcomes that students have there. But what really, really keeps me going is the great colleagues that I've been able to work with over those years. Not only colleagues, but some of my closest friends, Marybeth and Tom and Tom Hintgen when he was still there, and Michelle, and Carin and everyone else at camp, and all of our community volunteers that continue to come year after year, and that includes my dad as one of the fishing experts. So that really explains why I'm a part of this and continue to just love this year after year. Janet: I know you mentioned earlier, Jerry and Marybeth, that when you are actually in the camp for those three days they are exhausting, intensive and focused to get everything done. I imagine there must be such rewards for you at the end of those days. Listening to you describe why you are involved in the camp and how you got involved, I can understand your feeling of whatever you have to put into it is worth it at the other end, both for yourselves and for the campers. I imagine there are numerous logistical arrangements that have to be planned and managed to launch a venture as successful as your Aphasia Camp, and to keep it running year after year. Would you talk to us about the nuts and bolts of how you plan and implement Aphasia Camp? That is, what happens in advance and behind the scenes to keep the lights on, those nuts and bolt tight, and the s’mores at the ready? Marybeth. Sure, back in 2004, the initial conversations that took place between myself, Tom Hintgen, Tom Sather, and Jerry involved meeting with the neurology division here at Mayo Clinic Health System, meeting with actually two of the neurologists here, and then describing the retreat weekend that we wanted to put together, talking them through some of the financial resources, and asking their permission to go ahead then to promote a weekend retreat that would be supported by Mayo. In order to make that happen we also needed to develop or find a partner that would be a primary stakeholder with the program moving forward. We decided that the best partnership for the development of camp would be the University of Wisconsin Eau Claire, primarily the Department of Communication Sciences and Disorders. Some of the financial and people resources that were utilized here at Mayo included nurses from the neurosciences department, occupational therapists, physical therapists, chaplains, massage therapists, and at that time, four speech-language pathologists. We also had to get the permission of the Rehab Services Department in order to help finance the initial weekend of camp, which looking back now was not a difficult thing to do, because of the fact that we had already identified a partnership with the university and we had also had the conversation with the neurology department. The initial planning that was involved with that first camp involved identifying the key stakeholders that we wanted involved with the camp. It was important for us to identify the key stakeholders that shared our philosophy in developing the camp. The idea that, “We are all in this together”, was valued by all of us and we were looking to provide a sense of community, a sense of activity, a sense of relationship, in terms of developing that peaceful, relaxing weekend retreat with individuals with aphasia and their significant others. The university partnership was actually the best partnership that we could have ever imagined, because of the fact that we had two speech pathologists that were teaching within the Department of Communication Sciences and Disorders. In addition to the fact that we knew that in order to build this relaxing, fun filled weekend for individuals, we would need a community to help us. We would need volunteers that would be trained in communicating with individuals with aphasia. We knew that we needed a lot of volunteers in order to make this happen. And the students at the university who were studying communication disorders, were our best allies in terms of putting this camp together. In addition to the university development with the students, and the trainings that were involved with the students, we also put together an Aphasia Camp board, including the staff of the camp, the speech pathologists, a massage therapist here from Mayo, who actually was so invested in working with us that she turned out to be a staff person that has worked with us for over 10 years in putting this camp together. We also included individuals with aphasia and significant others to participate on the board. The reason we did that is because we wanted their expertise in developing a list of activities and events that would be most enjoyable to people with aphasia and their significant others. It was important for us to hear their voice and to put their recommendations and their ideas forward with camp. Another key planning step is the budget or the financial piece. Putting together the staff of these experts, including physical therapists, occupational therapists, nurses, neuro nurses that could spend the entire weekend with us, a massage therapist, and chaplaincy required some additional financial resources. It was so positive for us to hear that back then and even up until most recently, that the Neurology Department or the Neurosciences Department helped us with the financing of some of these positions. The Rehab Services Department provided the occupational therapist, the physical therapist, and the time for speech- language pathologists. To be perfectly honest, we could not have put this camp together without that financial support, both from Mayo and from the University of Wisconsin Eau Claire. In terms of working on the collaboration of the funding, some of the key items that we needed to look at were: the cost for a keynote speaker; the cost of some of the activities or the main events that we wanted to provide; the student fee, whether we were charging students or paying for the students to stay at camp and participate; the overall camp cost, meaning the rental of the cabins, the rental of the camp property, the rental of all of the buildings; and any resources that we may have used at camp, including boats, or drivers for boats, or kitchen cooks, maintenance team, what have you. Those are just some of the YMCA camp costs that we needed to consider. And then there were the other resources, including people and activities, including golf experts, community volunteers, or what we call community experts. Those individuals that we've identified that share our philosophy, that are willing to invest time for this weekend, willing to learn a little bit about aphasia and the best techniques for conversation, and those individuals that are wanting to provide an experience that is challenging, yet support the individual at the same time in order to meet their goals or to help them to be successful. Some of those individuals included a golf expert, an artist, a musician, some of the university team from the Drama Department, other individuals were from the Technical Department, Nursing Department, and the Physical Education Department at the university. Also, there were community artists, including some of the musicians, and artists, and chefs within the community that we knew were willing to participate and willing to spend the weekend with us. At the same time, we also knew that we needed to give them some type of an honorarium, pay some mileage. Also, when you're looking at providing a three-day retreat, you also have to consider the fact that there's going to be meals provided throughout that entire time and when you invite the community experts, the community volunteers, we also have to have enough money set aside that's going to pay for their time at camp and for their meals at camp. Other logistical planning centers around meeting with the YMCA camp director and working through logistics, including the actual lodging, the numbers of cabins that are needed, the number of cabins that could be used by student volunteers, the buildings that may have to be renovated a little in terms of helping us with accessibility, or even the consideration of technology with respect to Wi-Fi. And believe it or not, when you're in a woodsy-type setting, when you're trying to create this rustic, relaxing, beautiful weekend on a lake, it's difficult to have everything work from a technology perspective. There were many phone calls and many meetings just to kind of talk through some of the technology pieces and the Wi-Fi pieces, and if we had an activity that required an abundant resource of electricity, or an abundant number of computers. We had to make sure that we were in the right location in order for all of that to work. We also had to work through other logistics at camp, including some of the grounds areas. This camp was designed for children and so the pathways to and from cabins initially were like dirt pathways, lots of stone on the pathways. The pathways weren't lit very well, we had some areas of access down by the lake, or down near the boat dock in the marina, which were fine for children walking between these locations or accessing the dock or getting down to the marina, but we needed to work through some of the logistics in order to have people in wheelchairs or people who walked with canes to be able to access that area successfully as well. So that was just one of the major logistics that was involved in those initial planning years. Another piece that has to be considered is the overall scheduling and planning of the activities. Once the aphasia camp board decides on their host of activities and events, we then need to match those activities with the best expert or lead individual for that specific activity, and then develop a schedule for that weekend. It's always been very important for us to have that schedule be balanced with enough rest and activity for the individual with aphasia. This has been something that we've learned over the years and something that we continue to check at all times when we're putting activities together. We want to make sure that there's that time for people just to sit down, relax, take a walk, or maybe just sit by the lake and rest for a little bit. So, we're always looking for that for that even balance. The planning of those activities is something that we take very seriously and involve our camp board members in putting that all together. We also take a serious look at providing activities that could be challenging for individuals, but at the same time, provide that key support that they need in order to be successful. So, we take time to look for resources that would be beneficial for people to be successful, whether it be the adaptive bikes, different types of archery tools, different types of rods for fishing, art equipment that will help someone be able to do some techniques one handed, different types of cooking utensils, or cooking resources that will help individuals be successful, any type of adaptive equipment that we may need for golf in terms of helping people. Those are just a few of the examples that we need to consider when we're putting this entire schedule together. Through this entire planning process, we have a timeline that's proven to be fairly effective in order to keep us on task and making sure that we're meeting the list of activities, the list of schedules, that financial pieces are set, we've got payments that are ready to be made, etc. So, the timeline helps us to keep things moving along. As it gets closer to camp, we make sure that professionals are those experts or community volunteers are provided with the training, that they need to feel successful at leading these activities at camp. We also look then to have one lead speech pathologist and for our team, it's actually Michelle Knudson, who is incredibly organized. She has the eye for looking at a schedule, looking at a list of campers, looking at addresses, phone numbers, contact information, all their information, and then helping to put that together and organize all the communication that needs to go out to these campers in order to help them prepare for the weekend at camp. That task alone, the communication and all of that preparedness that goes into place for these campers in order to prepare for that weekend at camp, that action is something that takes a great deal of time. We actually do need one individual to manage all of that communication. I think Jerry could talk more about the student aspect in terms of the student trainings, and what we do to help them feel more successful and more prepared for camp as well. Jerry: Yeah, I'm happy to weigh in on that. I think when we talk a little bit about a day in the life of Aphasia Camp, we'll talk a little bit about that process of involving students. But as you can see, there's a lot of details that go into running a successful camp and I just really want to highlight the importance of all of those partnerships that Marybeth talked about. The partnerships with the university and with all of those community experts, as she said, to really keep camp going. I was thinking as Marybeth was talking at the beginning, I wasn't actually full time at the university until maybe our fourth year at camp, so we didn't have a direct liaison, and we didn't necessarily have funding. So as Marybeth alluded to, in those first four years, students actually paid to go to camp, paid to work their butts off for an entire weekend, which is kind of remarkable if you think about it, that we found enough students that would come in and do that. We'll talk a little bit more later about how we did get funding in those sorts of things, and what opportunities that creates for students in terms of preparation and learning. But a lot of those early days were a little grassroots and you know, us heading over to the university, providing some trainings, and we've gotten pretty efficient and dialed in on how to deliver those trainings in a way that prepares the students to be effective, and so that we can choose students that are a good fit for the camp. Because not everyone is a good fit for that context, but we think we know which ones are. Janet: As I listen to both of you talk, I started out with a beautiful vision of a bucolic area, and of a lake and trees, and then I began to hear all of things that have to go into creating this bucolic scene, and oh my goodness! You speak of a lot of excitement and cooperation, and positive things – I commend you for the efforts you have made over the years to keep this camp running. You mentioned a few obstacles you faced, such as training students. I am wondering what other obstacles you may have faced in starting the Chippewa Valley Aphasia Camp in 2004 and in keeping it vibrant for over 15 years now? I am thinking of things like permitting issues, or accessibility challenges, or liability constraints? How did you successfully overcome them? Marybeth: Yeah, there were a number of obstacles. The relationship that Mayo has with the Eau Claire YMCA was also a benefit to us because of the fact that there were some events that Mayo at that time held up at this camp. So that ongoing relationship helped us in terms of working through some of the liability types of things you're mentioning or that permit piece. Mayo put together a waiver form that we used for all of our individuals attending camp. So that was one of the first pieces that needed to happen. The second thing, or one of the most important things that we had to look at initially was, what was our process going to be if someone were to get injured at camp, or if someone needed medical attention, and that was something that was looked at by the key stakeholders, meaning, the YMCA, camp, Mayo, the university, and the camp board itself. We wanted to be able to have that process in place then in case something would happen to an individual either with aphasia, or just one of the family members. So, one of the things that was important from a Mayo perspective was to have that nurse up at camp the entire time or for that entire weekend. And so right from the beginning of our camp days, we've had a neuro nurse involved with us up at camp. The neurologist, the nurse, and the camp director then helped us work through the process, or that medical process, including that transportation, what happens when something happens at camp, how do you get that individual to the hospital, how do you access that medical team, etc. Those types of things needed to be worked out for that initial camp season. Thankfully, we've actually never had to use that process, but just knowing that we've had that nurse available at camp that we've got that process in place, has actually been really appreciated. In terms of the camp itself, one of the things that we needed to talk through with our entire camp board is the fact that these cabins have 10 to 12 bunks in them, single bed bunks. They also have no indoor plumbing and no heat. So, thinking about camp on a fall weekend, which usually our camp is the second weekend in September, forced us to also think about the weather and how we were going to keep these people warm, how we were going to make sure that people were comfortable in these cabins with the fact that there was no indoor plumbing. And then also, in addition to that, work through any types of transportation issues that we might have in terms of getting people from their cabins down to the main lodge or assisting people in getting to meals in the dining hall. It was important to us to be able to work through all the accessibility issues so that no matter how much of a physical limitation an individual had, we would be able to provide an opportunity for these people to have a successful relaxing, enjoyable time at camp. And so, we worked with the camp director, and also with the physical therapists and the occupational therapists, and all of the speech pathologists to make sure that we had taken the necessary steps in terms of making the pathways more accessible to individuals. We needed to think about lighting the pathways in the evening, we needed to use those orange cones to make sure people would watch out for any of those roots or rocks or anything that may cause someone to stumble. We needed to work with the camp director in terms of additional docking that would need to be done to help individuals access pontoons or access boats safely. We also needed to talk with them about repairs that needed to happen within the dining hall in terms of making any type of steps that were too high for some individuals to access to make sure that we had some type of a ramp or some means for people to be able to go to those areas without any type of a risk. We also made a decision early on to rent golf carts, a number of golf carts actually, to be used so that people wouldn't be fatigued, that they'd have easy access to those activities that might be off the grounds, including like an archery range, or to be able to go up to an area that was maybe a quarter mile away, in order to enjoy some biking, or to be able to take a ride on a pontoon, which, from their cabin, maybe was a tenth of a mile. So, it was important for us to be able to provide that means of transportation for them, that ease of access for them. One of the things that we were surprised at finding out and I guess, from working up there, this wasn't too surprising for me. Our individual campers really didn't mind the fact that we had no indoor plumbing, or the fact that there wasn't heat within the cabins. Everyone who is signed up for camp or everyone that we had talked to about attending camp knew that this was a rustic environment. This wasn't a hotel. This was a place where you're going to have to carry a flashlight when you're out at night, or you may need to go to the other side of a building and into a wash house, if you wanted to use the bathroom. People didn't mind that, though. They were actually looking forward to that peaceful, relaxing weekend. So yes, to your question, there were obstacles. But actually, with everyone working together, we were able to work through all of the issues without too much difficulty. And to be honest, without a whole lot of expense. The camp director and the Eau Claire YMCA were very, very interested in providing this type of an experience for these individuals, so they were on board to help in any way that they could. Jerry: Marybeth if I can add, the YMCA over the years has really done a lot to increase accessibility, not just for our camp, but for all of the camps that happened in the summer with children as well. That’s something that, you know, it's still a rustic camp, as you said. But that accessibility has really allowed us to do a lot of things with outdoor activities with sailing, and as you said, pontoons and fishing boats and kayaks and all of those sorts of things. Marybeth: Yeah, exactly. Exactly. Janet:: It sounds to me like you had this wonderful vision, and there were obstacles, but you must have had fun overcoming some of those obstacles. I can hear it in your voices. I bet it took a lot of s'mores though and a lot of discussion during those numerous meetings. Jerry: And a lot of coffee. Janet: A lot of coffee is right! Tell us about a day in the life of the Chippewa Valley Aphasia Camp. What is camp life like for you, for your staff, or your campers, and for the students? Jerry: Marybeth, maybe I'll start with the students if that's okay. Marybeth: Yeah, that would be great. Jerry: Students really begin this process months in advance, and I think Marybeth was alluding to this earlier. So, each spring around late March, early April, we put out a call for student volunteers. And typically, we get about twice the number of applicants as we have spots. So, it's a pretty competitive kind of position. Most of our students are from communication sciences and disorders, but we always have a few spots saved for some other disciplines as well. We have a kinesiology program that has pre occupational therapy, pre physical therapy, so we typically have one or two students there. We get some students from social work. We haven't had students apply from nursing, but that's always an option as well. We've even had students apply from computer science and they're a really great asset, given all of the technology it takes to carry out some of the things that camp. In fact, one of them has been with us, I don't know 10 years plus at this point, and really a part of our staff at this point. When students make their applications, we read through their essays and we try to get a sense, as I said, of whether they'll be a good fit for camp and some are and some are just not quite the right fit for camp. Those accepted go through an online training module, and then we have three face to face trainings as well. In two of the trainings, they learn a little bit about a day in the life at camp actually. Then we train supported conversation techniques. Those meetings are each two hours long. Then we have a third meeting, another two-hour meeting, just about a week before camp, really focused on logistics, last minute planning and their roles. We talk a little bit about their talents and how they might bring those talents like singing, playing a guitar playing the drums, those sorts of things, at camp, to the campfire, and so forth. We're always looking for a few crafty people to help out with things that we do in terms of prep in the evenings and so forth. Some of them have projects straight up to the time of camp, to prepare things for different sessions, and so forth. Once they're at camp, they are working hard. From 6:30 or 7:00 o'clock in the morning, they're up helping prepare breakfast and then they have a full day of interacting with those campers as well. Their roles are really to help engage people in meaningful activity, and to kind of transparently, almost like they're not there, provide communication ramps and supports that allow people to communicate within those activities. It's really fun to see a well-trained and a terrific volunteer just kind of seamlessly providing those supports while the person is just engaged in archery, or making a craft, or whatever the activity happens to be. Because of that, both our students and our campers really say that it just feels really natural. Campers often say that they feel like they don't recognize that they have aphasia for a moment or two, which is obviously our big goal for the for the camp. We don't assign students to specific campers, but we do assign them to sessions, because we want to be able to balance the number of campers with those potential supports. So, students will, just like campers, go from session to session, and engage in the session. We don't want them just standing there but be prepared to kind of step in at any given moment, to provide those supports when they're necessary. We have an expression for campers that everything at camp is “Challenge by Choice”. We want people to push themselves, but not to the point where they're uncomfortable. And for the most part, that's true for students too. We tease them that a few students get assigned to the Polar Plunge on Sunday morning, and that's kind of challenge by, you know, force, but they're really good sports, and they're always good at jumping into that ice-cold water mid-September. So that's a pretty typical day for them. A couple of other things along with interacting with campers and their partners and all of the great conversations that happen within sessions or just sitting at the campfire, each do a rotation of kitchen duty, and they help out with all of the other logistic tasks behind the scene in terms of setting up for sessions and so forth. And again, they do it in a way that is really transparent, and you can't even really recognize sometimes that they're providing those supports. Every evening after we close down the campfire, and we have these great campfires singing and telling stories and interacting with each other. After that's all done, the students make sure that the campers are returned to their cabins. And then we keep them busy for a little bit longer. So, we have them do individual reflections and video reflections and then we get together in small groups or pods, where we kind of debrief the day, what went well, what could have gone better, what their goals are for that next day. And then at the end of the entire weekend, they stay around to clean up the camp, we do another final debriefing, and then they're still actually not off the hook yet. They help us haul materials back to the university and back to Mayo. And that ends up being late Sunday afternoon by the time that they're returned. We see this real transformation for some of those students and you know just what that experience brings them. And many of the students will volunteer year after year. We have some of those students who have kind of a veteran experience and can be mentors to the newer students as well. Janet: I think I'd like to be a volunteer at your camp. It sounds fun, even the Polar Plunge. Marybeth: Yes, I was just going to add that the camp staff then handles some of the logistics early in the morning before the campers rise. Some of that early activity participation includes unloading the canoes from the racks, getting life jackets out, organizing paddles, getting the adaptive gloves ready that need to be used for canoe paddling, or getting those special adaptive pieces that we use on the recumbent bikes so that individuals that have some physical limitations are also able to participate in in biking. We're making sure that we've got the archery equipment where it's supposed to be, that we have the adaptive pieces set up, that we've got the rods with the reels for fishing, and the necessary gloves that need to be used for fishing. We also have some of our students actually take those golf carts around in the morning prior to breakfast, making sure that if people need rides down to the dining hall, early to have that that cup of coffee, or to visit with people, or just to go for a little walk in the morning. We then have students ready to provide that service to our campers. One of the things that I wanted to mention in terms of training with our students is we continually tell them that the attitude of “Whatever it takes”, and “How can I help”, is what we're promoting at camp. It's just amazing to see from the start of camp, and watching the students in terms of providing that kindness, that genuine care to foster that sense of enjoyment and that relaxation, for those campers is seen early on, and then just flourishes even more, and it's something that's contagious. We see all of our students doing that throughout the entire weekend. We hear from our campers, we hear from those individuals that they've never experienced anything quite so kind and caring and where they felt like people were always willing to help them. We also then check in with our community volunteers are those experts coming up for the day to make sure that they've got everything they need, that their activity or their session is organized and ready to go. We have one individual staff person that is basically on standby and just oversees all of the different activities, checking to make sure that if there's something that is needed, from a technology standpoint, or some device that's needed by another camper, or an instructor that may need an additional massage chair, that all of those little things are taken care of by this individual who kind of oversees everything. Then as Jerry mentioned, we just go from activity to activity and check our schedules. We make sure that if campers are interested in switching an activity or they maybe see something else that looks a little bit more pleasing to them than their original activity, then we also help to make that happen so that campers are able to participate in activities that that they're driven to and that they're really motivated to attend. Janet: It sounds like you and your staff, your students and campers are busy from sunup to sundown, and even past in your campfires. I bet everyone goes to sleep exhausted at night but very happy with their days. I can just see it and sense it in your voices as you are describing the enthusiasm you have for camp. How do you secure funding to support your camp every year? Marybeth: That goes back again to Mayo, who is the primary funding source, but also to our partnership with the university. The university provides extensive funding in terms of the student's ability to participate at camp because to be perfectly honest, Mayo would not be able to fund the entire camp weekend for individuals without the support of the university providing that financial support for students, and also providing some of the financial support for a keynote speaker we may have, or one of the main events that we may want to provide. We've also been privileged, actually, to receive some donations by individual campers. Over the years, we've received financial donations, in addition to actually receiving a couple of recumbent bikes from campers that have wanted us to provide biking to individuals, and knew that we didn't have all those recumbent bikes that had the bells and whistles that were most appreciated by individuals with some physical limitations. We were so very, very pleased to receive a couple of these recumbent bikes. In addition, I have to say that the speech pathology staff and some of these other key members on our team have donated hours and hours of their time. That's not, you know, a financial piece, but that's definitely another piece of putting this entire camp together, the amount of talent and time, in addition to the money that's needed. Jerry: I can speak a little bit about some of the specifics at the university as well. So, as I mentioned, for the first few years, I wasn't employed at the university. So, my first year in employment at the university, I applied for what's called a UW Systems Differential Tuition Grant and I somehow was fully funded for five years. Then we had that renewable for a number of additional years. So, we had three years of renewal, and then our state went through some difficult financial times, so we lost that funding. Just as we lost that funding, we had a fairly new dean, who is fabulous, supports all of the work that we do, and she secured funding for long term. Our college actually funds all of the students attending camp, travel time, time for their training, the food for their training, the lodging at camp, the food at camp, and then, as Marybeth said, some additional funds for keynote speakers or other activities at camp. Also funding for staff, for Tom Sather and myself, for all of the development time for camp, and then for our time at Camp as well. We’ve been really fortunate to be in that position of being well funded between Mayo and the university. Janet: That’s good to know. Marybeth, I am reminded of what you said earlier, that you were all in this together, and it does sound like that through the years you’ve shown the positive effect you can have on the students and the campers, and that encourages people to give you additional funding. It is great that you have been able to do this and sustain the amount of funding. Jerry and Marybeth, I imagine that despite your best planning, there have been some hold-your-breath moments with campers in camp life. Will you tell our listeners about some of those moments and how you worked through the challenges they may have posed? Jerry: Do you want to start, Marybeth? Marybeth: I'm not sure if you and I have the same thoughts here, but when I thought back on some challenges that we've that we've gone through, two of the things that come to mind quickly is ,we had one camper that that fell in one of our wash houses when they were getting ready in the morning, washing up and using the bathroom. Now, it might not sound like a big thing, but when you are hosting individuals at camp that have had strokes, or individuals that have had strokes and seizures, in addition to maybe a few other medical comorbidities, you are always thinking that if someone may fall, or have a seizure, or have some type of an event when they're out on the lake in a boat, or on a pontoon or sailboat canoe, what have you that you're always concerned as to how you're going to handle that situation. And fortunately, we've had only two situations where, in one case, an individual fell while he was getting ready in the morning while he was in the wash house. Now these wash houses have cement floors, so the individual did fall. He did hit his head, not hard, according to his father, but you know, he did hit his head and that was serious. We contacted the nurse right away, she came, she oversaw the situation, and talked with his father. He was watched carefully and per his and his father's decision, he was feeling fine, he was doing all right, they wanted to stay for the day and just see how things went. That situation turned out fine. He was okay, and we followed up with him the next day after him and his father had left at the end of camp and he was totally fine. But those things can be really scary, especially when you're out in the wilderness, and then you have something happen. And, yes, you've got trained people there, but it's not a hospital and you're not in a hotel where you can access things really quickly, either. So that's just, one of the things that I can recall that was actually challenging. And Jerry, maybe you have other ideas. Jerry: I was thinking of a couple of stories, I think it might have been our second year at camp, we had a lady there who was actually maybe only six months out of her stroke, something like that. One morning, she just decided to go for a little walk on her own and I remember kind of panicking looking around for her. She was just down the road, you know, a few 100 yards or something like that, didn't think anything of it, but got our blood pressure up a little bit. Probably the next best story is one, I think Marybeth and Tom Sather and I were involved in. We had this really cool ceremony one year where we had floating lanterns with candles in them, and we sent away our troubles and our goals for the next year, those kinds of things. If you've seen the floating candles, it's kind of like that, but you send them out on the lake. So, these candles went out into the lake and it was just beautiful, and we have just the most beautiful pictures of all of these candles floating off into the distance. Then all of the campers left, and it was great. About that time the wind picked up and blew all the candles directly to the shore, along the pine needles and so forth. Tom Sather and I scurried to the boat, and we had our net, and we're scooping up all of the candles and trying to put them all out before they hit the shoreline and started camp on fire, which fortunately we averted. But that was definitely a moment that it went from the most tranquil, beautiful setting to oh my gosh, we're going to burn down the camp. But we did not. Janet: No contingency plan for that one, just get in the boat and go quickly! I'm sure that there are many more heartwarming stories that you have from Aphasia Camp than hold-your-breath moments. Tell us about some of those heartwarming stories. Marybeth: Sure, I can start. There's one particular lady who has come to our camp. I think she's come to our camp for 12 years now with her husband. She’s a musician who played in a group when she was a young woman, sort of did that on the side sang, played the guitar, and I'm not sure if she did keyboard too. She had a stroke and had a non-fluent type of aphasia. She communicated with few words, but her facial expression and her gestures said it all. We typically invite different types of artists to camp every year, because we really want to provide that type of activity to our individuals. And we know based upon that feedback that we get from the individuals that attend camp, that many of them do appreciate art in the various arts. So, this one particular year, we invited an artist, a very well-known artist, who came and did some pictures of natural still life and a few other things, but primarily this still life was something in his repertoire. This lady attended the class and she was so engaged. and I think many of our listeners would actually say that she looked as if she was in flow, when she was participating in art. To watch people come around behind her or to come up and look at her painting when she was finished, was breathtaking. Because here's this woman who had very, very few words, who had some physical limitations, who was using her non dominant hand, and painted this beautiful, beautiful picture. For her husband to see her painting and to see her participate was simply amazing. He was so taken with her artistic talent. That weekend after they left our camp, I received a call from him, I think it was the Monday following camp. He told he told me that he was so happy to see her participating and painting and enjoying it so much that on their way home from camp, they stopped at an art supply store and he bought her an easel. He bought her all these paints, brushes, different types of paper and boards that she could work from. I don't think I'll ever, ever forget that image of seeing her paint. And then also to hear his comments about how appreciative he was that we could help to reveal those skills. Janet: Moments like that make it all worth it, don't they? And Jerry, I'm sure you have a heartwarming story as well. Jerry: I was thinking as Marybeth was talking, I have hundreds of snapshots in my mind. And what Marybeth said about revealing competence and revealing what that person can still do through those activities at camp, a lot of times it's very much like that, where they didn't realize what capabilities they had until they did it again. I'm just going to walk you through a few of them. I happen to run the woodworking class at camp because that's one of my skills. I've seen people who are carpenters and woodworkers doing this for the first time since their stroke years later. I know Tom Sather is one of our resident golfers and we've seen golfers swing their club for the first time since their stroke. Often one of the things that they'll say is something like, “Why haven't I been doing this for the last five years?”, “I didn't do it again until I was at camp.” A couple of years ago I had a young woman with aphasia, catch a 44-inch muskie on a Sunday morning, just before our closing sessions We did a little scrambling but were able to kind of incorporate that in the slideshow, and just the joy and the pride on her face when that came up on the screen, and everyone just kind of said, “What?” She had this massive fish and was holding it in her arms. We've done that by having campers lead sessions. We have a guy who leads crossbow sessions, and another one who leads cooking classes, and another lady who leads crafting and beading sessions and shows her adaptive equipment that she uses. We have another that makes candles and makes cards. We even had a partner who is a printer, and she printed all of our t-shirts, but kind of personalized t-shirts for all of the campers right at camp. That was pretty cool. So those are the kinds of things that really, really stick out to me. And then I have got to say, our students, just so many fabulous students who have this, the only thing I can say is just this remarkable transformation of understanding what it's like to live with aphasia. And what it takes to support that individual and whether they go on to serve people with aphasia, or children, or whatever it is, they've got that glimmer in their eye that says they care about that human being. And that's really powerful. Janet: I can imagine. Two words struck me in listening to the two of you talk about these heartwarming stories. One phrase is revealing competencies; that you are uncovering what has been there all along and are helping people understand how to do what they want to do in a different way or a new way. The second word that you said is transform. Students are being transformed; campers are being transformed; even you as the staff are being transformed in your way of thinking. It is your camp activities that are doing that. I think it is a wonderful thing you are doing, and I can certainly see that excitement and the transformation in you as you help the campers reveal their competencies. For our listeners who are thinking about starting an aphasia camp, well, that is whenever we can, again gather in person, what advice or suggestions or lessons learned, can you share with them? Marybeth: I think one of the very important things that people will want to consider is to take time to select the key stakeholders that share that similar philosophy. I think identifying those partnerships is critical and crucial to the success of whatever type of retreat or event that you want to provide. Secondly, I think you want to be focused on providing that atmosphere of delight. And always thinking about that, “whatever it takes” approach when developing your schedule of activities or your schedule for the weekend. And thirdly, I also totally believe that it's important to listen and involve the individuals with aphasia, and their significant others in the development and the planning of everything. I think they need to be involved from the get-go. They need to be involved in those early stages, so that we understand, we learn from them, in terms of what's going to help the most, what they're looking for their goals, their ideas, things that they want to be challenged with, what have you. I believe those are the most important things.  Jerry: Agreed. I would say just surround yourself, and Marybeth talked about this too, surround yourself with good colleagues and friends, people that you're going to want to be around for 16 hours a day, 17 18 hours a day while you're at camp, plus all the prep time. We stay up all night long practically. To have good people around you is important. Find a good network of community volunteers. We talk about this ripple effect that it creates; you know, they talk to their friends and we get people involved. We have community volunteers who plan their vacation time around aphasia camp so they can come. Last year during the pandemic I had people call me and say, “I'm so sad that we're not having camp, let me know about 2021, I want to be there.” Those people just come back year after year. Recruitment and training of students is important. We specifically seek out students for whom this is going to be a turning point kind of experience. Some of them are ones that may not be as strong academically, but really may excel clinically, or in their interactions. We think for them, it's an opportunity; we still get our pick of a lot of really terrific, strong students, but we always seek out a few students for whom this is just going to change them. Then I would just say, connect with other camps and talk to other people at other camps. Janet: Thank you both or those wonderful insights. Jerry, you mentioned a ripple effect, in so many ways. You said earlier in our interview today about the changes that happened at the YMCA camp as a result of beginning to host people with aphasia. That is a ripple effect too, of the changes that went out into the community that you have supported, the physical changes that happened to the camp, the changes in thinking people have made by welcoming people who have physical disabilities and communication disabilities. Good job for all of you, for the work you have done and the connections you have made, and the lessons you have shared with all of us.  As we close this conversation, I would like to compliment you on an amazing and vibrant program, and to ask each you to recount one of your favorite camp stories from among the many, many that you may have. How about you going first Marybeth? Marybeth: Okay, two things, and I'll do this really quickly. I think the expressions on the faces of our camp planning team, when I bring up some of the crazy ideas and crazy experiences that I've gone through in my early days as being a camp counselor or camp program director is exciting for me to see. That whole idea of the of the Polar Plunge, or taking individuals out sailing and actually having people with aphasia being the person that's leading the sailing or in charge of sailing the boats, taking people on long hikes into the woods where it's maybe a half mile and the terrain isn't great. Seeing the expression and then also seeing that next expression, which is “Yeah, right, why can't we do that? Of course, we can do that. We can do anything.” I think that's one of the really cool things when I think about camp. The other vision or image that comes to my mind is one where we help people to be able to ride bicycle by riding these recumbent bikes. For some people who've never been on a recumbent bike or have never been on a bike since their stroke, to watch them going down the road whizzing by, pedaling because it works with the type of adaptive equipment we have, is totally amazing. Totally amazing. Jerry: Yeah, I've got two big things that come to mind. One is just probably my favorite thing at camp, and this is saying a lot given how much I love the interactions with campers, but this is with my friends and colleagues when we're up at 3:30 or 4:00 o'clock in the morning eating Circus Peanuts and drinking coffee and waiting for the hour and a half of sleep that we're going to get before the next day. We goof around, we have fun, and have a lot to do, but that will always be one of my favorites. I think one of the other things is the closing ceremonies that we have where we give camper commissions. Essentially, that's their charge for the next year; “Right. So, here's what we saw you doing at camp. This is the change that we've seen in you and the activities that you undertook and the accomplishments that you made. And this is your charge for next year, what we hope to see from you.” I think that's really powerful. I just want to mention one other thing for the listeners. We have a number of publications, including one that came out this past week, and we'll make those available if people are interested as well. Janet: Thank you both, Marybeth and Jerry, for your inspiring stories, and the practical guidance from your experience at the Chippewa Valley Aphasia Camp. I have said this a couple of times today – I want to be a volunteer there, it sounds like so much fun, even if I would be up until 4:00 in the morning eating Circus Peanuts and Coffee??? Probably not the best diet, but it works at camp, I guess. Jerry: Sure does! Janet: I appreciate both of you taking the time to talk with me today. This is Janet Patterson, speaking from the VA in Northern California, and along with Aphasia Access, I would like to thank my guests, Marybeth Clark and Jerry Hoepner for sharing their knowledge, wisdom, experience and stories as leaders, campers and chief s’more makers at the Chippewa Valley Aphasia Camp. You can find references, links, and the Show Notes from today's podcast interview with Marybeth Clark and Jerry Hoepner at Aphasia Access under the resource tab on the homepage. References and Resources for the Chippewa Valley Aphasia Camp https://www.uwec.edu/academics/college-education-human-sciences/departments-programs/communication-sciences-disorders/about/community-resources/aphasia-camp/ https://www.uwec.edu/news/academics/hands-on-learning-provides-support-to-aphasia-community-686/ https://www.mayoclinichealthsystem.org/locations/eau-claire/services-and-treatments/neurology/aphasia-camp  

Jerry Hoepner, a faculty member in the department of Communication Sciences and Disorders at the University of Wisconsin – Eau Claire. I am privileged to introduce today’s guest, Dr. Sarah Northcott. We are fortunate to have a conversation about her work and the application of solutions focused brief therapy and psychological supports to individuals with aphasia.  Dr. Sarah Northcott is a Senior Lecturer in Speech and Language Therapy at both the University of East Anglia, UK, and City, University of London, UK. Her research interests lie in exploring ways to support the emotional and social wellbeing of people living with stroke and aphasia. In 2016 she received the UK Stroke Association Jack and Averil (Mansfield) Bradley Fellowship Award for Stroke Research, which enabled her to lead the SOFIA Trial (Solution Focused brief therapy In post-stroke Aphasia), a feasibility wait-list controlled trial. She also led the qualitative evaluation on the SUPERB Trial, investigating peer befriending for people with aphasia, also funded by the UK Stroke Association.   Take aways: Social networks are wonderful for people with aphasia after their stroke, and these social networks often predict outcomes more than the severity of the stroke. (9:30) It is crucial that speech language therapists receive training on this topic so they feel comfortable stepping into those moments when there is a need for psychosocial support, or at least recognize when they need extra support in doing so. Solution focused brief therapy is designed to help people build change. With training, it is important that speech therapists transition out of the “fixer mindset” and the thought that they need to fix everything, in order to successfully provide this psychosocial support.  Paper and pen, or objects from the individual’s environment that they are comfortable using, are the most effective visual communication methods when going into these unpredictable conversations. Always make the most of people’s strengths and talents and focus on what is already going well. The client is the expert in their own life!     Jerry: Greetings from across the pond, Sarah. I'd say good morning, but perhaps good afternoon for you. Really nice talk with you today.    Sarah: It's lovely, thank you very much to be inviting me as part of your podcast series. That was really lovely to be here.    Jerry: Absolutely, our privilege. I'm really excited to dive into this important conversation again, a topic near and dear to my heart as well. And before we get started, can you share just a little bit about your mentors and collaborators and kind of how you found your path, so to speak.   Sarah: So, I first trained as a speech therapist about 20 years ago now, and it was when I was starting to work with adults who had a stroke for the first time, I guess, I started to realize how difficult it was to, how your life can be turned upside down by having the aphasia and how isolated some of the people I was working with were as well. And it was around that time that Katerina Hilari from City University contacted me and asked me if I'd like to do an MSC looking at social support for people with chronic aphasia. And that kind of tied in well with what I was noticing in my clinical work. And I think I was really struck by that project, I found it really exciting to be working on that project. And it also felt important because I could sort of see the clinical relevance from the work I was doing. I guess I'm very grateful to Katerina, because she sort of opened that whole door for me. And it was really Katerina, who encouraged me to do the PhD. the PhD was looking, taking that work forward, looking more generally at social support after a stroke. So, for people with and without aphasia, and what social support really mattered to them, what value it had, what tends to happen to their friendships. And yeah, I feel very lucky that she was had a lot of belief in me and really encouraged me to do that. And after my PhD, she was still there for me. So, I have quite a difficult season, because when you finish your PhD to know quite what to do next. And yeah, she's always been incredibly supportive and has been really there for me sort of had a belief that the work we were doing was important and valuable, and that I had something to contribute. So that was, yes, she's like, I really respect her academic judgments. And she's been a really big part of my life, I guess, the 15 years that we've done some lovely work together. And that's been really rewarding. And I guess more recently with the SOFIA fellowship project I've had, as well as Katerina, three other supervisors, so a mental health nurse, and two psychologists and I think, I there was real value for me and being supervised by people who weren't speech therapists. So, I really learned from those with different perspectives and what they were bringing to it. So, one of them Shirley Thomas, who sort of is leading the column base trial campaign for activation therapy for people with aphasia. So of course, she brought a huge wealth of knowledge about running trials with people with aphasia, which is not the easiest thing to do, assessing him for his knowledge about mental health nursing. And I found that really helpful to get those perspectives and put that into the research. And so, many lovely people to work with. I don't think I've ever felt alone with it. And if anyone out there is a speech therapist or speech therapy student and wondering about research, I would say, it's really important to have a team around you because it's not always the easiest thing. There are not backs when you get rejections and then things don't go to plan. So, have people around you who believe in you, and will support you through that and support you not just for the academic side, but sort of quite holistically as well. So, I think I've been, I've been very lucky with the support I've had around. And I've certainly I've not done any of this work alone, it's always been a very much a team thing. And I'm very grateful for the team I've had around me. So, if anyone of my supervisors have happened to listen to this, a big thank you to all of them.   Jerry: That's really well said in terms of the importance of just having that team that work around you, for sure. And really a powerful story about Katerina reaching out to you, that must have just been really a great moment and ongoing moments to encourage you with your PhD and beyond. So, I agree some definitely lovely work that two of you and others have done together regarding psychosocial effects following aphasia. So, I just love that whole body of work.    Sarah: Yeah, and I feel very grateful to the school that everyone has given me with that. And I would say that again, I guess that's another thing to pull out of that if someone's thinking about whether to go into research, it is so important to do research in an area that you're quite passionate about, and you really believe in because it's tough doing research. So, I think you have to have a real motivation. And I think that's kind of going as well as that as a support team to have a kind of belief in the projects.   Jerry: Absolutely. And it's really evident in the work that you do and the connections that you have to real individuals with aphasia. So, it definitely shows through, and again, those interdisciplinary connections you mentioned, Shirley Thomas, and she's done so much work in this area. And that's been powerful.   Sarah: You know and I think I think it's been really interesting to work with a psychologist coming from a different background and a different perspective on research. And I've definitely learned loads from them, it's been really helpful.   Jerry: But an excellent place to start. Just to kind of roll back the clocks a little bit, I think many of our listeners are familiar with your work on the stroke social network scale, and the social networks and supports for people with chronic aphasia that you've done with Katerina Hilari. So, I think that is a really nice place to start in terms of just thinking of where you've come from. In the 2018 article in the International Journal of Language and Communication Disorders, you identified several barriers to accessing appropriate psychological support for individuals with aphasia. And likewise, in your 2017 article, in that same journal, you found that most speech language pathologists or in the UK, speech language therapists, lack the confidence to implement the appropriate psychological supports for people with aphasia. Of course, that's really been shown by --- and colleagues all around the world, but it's just such a prominent issue. Can you talk a little bit about how all of this kind of led into your current research regarding solution focus brief therapy?   Sarah: Of course, and thank you for reading these papers.   Jerry: Absolutely.   Sarah: So yeah, do you want me to take it back from the beginning for the sort of social support stroke social network scale and then work from there?    Jerry: Sure, that'd be fine. That'd be great.    Sarah: Yes, in my PhD I was looking at social support, and one of the outputs of that was the stroke social network scale. And it is something that Katerina's done recently is set up a repository of different resources from City University, so just if people are interested in some of the work we've done at City to go to the current website. And you'll find it there, you'll find that scale there, you'll find her cycle 39 scale, and we're trying to build up that repository. So, that's just a nice resource for anyone in the world to tap into. And I think, yes, in my PhD reverb, we're looking at what happens over time. And it was one of the themes that came through was that social networks are quite wonderful after a stroke. And they seem to be particularly vulnerable for people with aphasia. And that seems to be a really predictive factor of who's going to maintain a strong social network, a stronger factor, even then stroke severity or disabilities. So, that was a quite striking finding. And I think I felt very privileged in my PhD because part of it was doing questionnaires of people over time, but then also doing qualitative interviews of people around about a year post stroke, so I had a year of my life walking around London doing these interviews of people and listening to people's stories. People are very generous with their times to share how they found the stroke, what was important to them? And yeah, and exploring with them all the value of connection and what that meant to them after the stroke. And also, we could see from the quantitative data that people were losing friends. We didn't mean, there was a chance to explore with people what's happening, what does this mean to you? And it was, you know, so many reasons that people gave of why they were seeing their friends less, you know, they weren't going to same activities that they used to. So, they didn't see those friends in those contexts anymore. They were exhausted, and they didn't have the energy to initiate contact. With a disability, they were housebound, and how you host and your lack of reciprocity there. And of course, the phase, you're in a phase of disrupting the dynamics of friendships, and a big theme that came through as well, there was the close link between this sense of feeling a little bit withdrawn and cutting us off a little bit. So, the link between mood and friendship loss, and it's like a vicious cycle, I guess, of becoming withdrawn, not going out, and then getting low in mood and then becoming even more withdrawn. And I think some of those stories affected me quite a lot. And at the end of my PhD, I was wanting to say, well, what intervention could we have that could break that vicious cycle and make it more of a virtuous cycle? To encourage people to, or what do people need to be able to feel they can start to reengage again and start to live the life they want to live with the stroke and aphasia? So, I think that was the motivation for me at the end of the PhD to think it's quite a big thing to go from observation research into intervention research. I don't think I've quite realized actually how big a thing it was and how much I was undertaking it as a way of learning. But I think that was my motivation to start thinking about interventions. And so, this was five years ago. And at that point, there was very little in terms of the research evidence base for effective psychological therapy for people with aphasia. And Shirley's lovely studies, comm study, I wasn't the basis to her lovely systematic review quite recently. And yes, its basis is still pretty thin and has some really nice research coming through. So, there's all the lovely stuff in Australia and in the world, but it's still, I would say, I was surprised how many psychological stroke research studies were excluding people with aphasia on the grounds of their language disability. So that was quite motivating for me to think, as a speech language therapist, what can be our role? What therapies might work well, so that was nice to start playing. And then as you say, before I went into doing the solution focused brief therapy trial, I did some work, listening to speech therapists. So, we did an online survey, and then we did some focus group analysis and had an experience trusting the psychological well-being of people with aphasia. And, yeah, that was, so it was really striking that speech therapists, they really want to do their best. And they were doing some lovely listening, and they're setting up groups, and they were telling us all the things that they were doing. But there was a sense of, actually, this is not an area where you feel confident. And this is not an area that we feel particularly more trained or supported in. And we have this sort of unease that if we spend a session listening to someone’s distress, should we spend that session, doing language goals, you know, was that the right use of our time. And that particularly felt uneasy when they felt that it was all on their shoulders. And if they got out of that debt, they had nowhere to turn to for extra support, when they felt that the management and their team have to be valuing that work, supporting them in that work, where they didn't feel they had the training. They were time pressured, and conversely, in teams where they felt that there was that sense of holistic team culture, and it was valid, it was easier if they had some training. And particularly they had such a support. So, I think what might work particularly nicely was whether there was a mental health professional psychologist within the team, with a kind of opened door policy who they felt they could knock on the door of and ask them for advice as they went along. And if they started to go down to their desk, they could do joint work together or handover. And where they felt they could get informed advice and support with it. That seems quite enabling to speech therapists to feel that this is something that they could address and feel comfortable addressing.    Jerry: Wow, that's terrific. I want to go back to just a couple of things that you said. That idea that social networks predict outcomes more than stroke severity, and then that cycle between changes in mood and withdrawal and how that kind of feeds itself. And I think that last point, when you were talking about Speech Language therapists, that training, right, just not feeling comfortable, but when they get that training, they feel more comfortable and are able to step into those moments when there's a need for that psychosocial support, or at least recognize when they need outside help as well. So.   Sarah: Yes, I think it was quite interesting for people was just saying one of the things that they got from training and experience was, when they complete it, when they were newly qualified, they had the sense that they needed to fix everything, there needed to be solution and quite anxious with situations where they couldn't fix it. And with training they kind of reversed this around to thinking sometimes it's really very good just to be there with someone or just to listen and that's valuable in itself. And they thought they had some skills to sit back on enabling them to do that. So, listening and being there with someone when they’re distracted, they felt more comfortable out on their own.    Jerry: Yeah, I agree. And making that shift out of that fixer mindset I think is a really important part of providing that type of support, for sure. Absolutely. So terrific introduction to this. Can you talk a little bit about why speech language therapists should consider the psychosocial impact of living with aphasia and kind of what their roles are in terms of addressing psychological well-being, psychosocial well- being?   Sarah: Sure. So, what came through in the focus group project was the sense that often people with aphasia, that speech therapists are meeting, have sort of been trapped in this world of aphasia, and they got a real value from having a speech therapist facilitate them, explaining what it was like to be them, what it was like to live with the aphasia. And the speech therapists have skills of listening and facilitation, and that's really valuable. So, I would say that for someone with aphasia who has more severe distress, more severe mental health issues, I think speech therapists have a role in facilitating and accessing mental health professionals as well. And what we found in the focus group project was speech therapists we spoke to were concerned that people with more severe aphasia, it was very hard for them to access psychological health and mental health professionals who understandably found it very challenging to adjust their psychological therapies for someone with more severe aphasia. And I think also what we found in the UK, and I don't know if this translates to the US, but in UK near the stroke, so in your acute stage, just post discharge from hospital, psychologists working in those teams more like, sometimes like it was just like in ASD so there was quite spectrum where the speech therapist was very disappointed that those people with aphasia aren't suitable candidates for therapy because of their language disability. But there are also psychologists in this stroke special services who are skilled working with aphasia, we're happy to be joint working with the speech therapists, we're happy to work with the family members around the person with aphasia. But when the people with aphasia went into the mainstream mental health services, then there were more issues around mental health professionals struggling with the aphasia. So, I think in that situation, the speech therapists have a real role in supporting someone with aphasia and accessing those services. So, I can completely see that as a speech therapist listening here thinking like not really wanting to go and get lots of specialist training and delivering pre psychological therapies is not that I see my world what I want to do, but I would say that it is important for speech therapists to not undervalue their own skills of listening and what that can be for someone with aphasia, or underestimate that we can have a sort of bridging role and helping people access psychological services. And another thing I'd add to that is that, you know, really listening to someone who is having a hard time, it's not easy, and I have some sympathy with speech therapists who are starting to learn to project, and starting to feel anxious. And I would say that it's important to feel supported in that work and so there's someone that you can go to, and people talk about peer support a lot and how valuable that was. But to find some way of feeling reassured that you're doing the right thing, sometimes as well, that it is the right thing to sit there with someone who are distressed. I would say, I'm a really big believer on making sure you've got support systems for the therapists as well.   Jerry: Absolutely. Just to touch on a couple of those points. I completely agree that speech language pathologists, speech language therapists, have a real unique skill set that allows us to facilitate, to support that communication and hopefully support expression of, you know, those psychosocial kind of needs and concerns. And I also think that we're really positioned well, to facilitate and support those interactions, as you said, with psychologists, and perhaps, you know, training, collaboration, kind of mutual bidirectional training in terms of giving them the skills to support communication and expression. And certainly vice versa, them kind of sharing their knowledge, those psychosocial and psychological supports as well. So…   Sarah: I think that joint working is a really lovely model and way of thinking about structures, isn't it? I mean, if you haven't got the psychologist to sit next to them, it's much easier. And there were definitely people who spoke about psychologist is in a different team, it's much harder to get a hold of them. And there just work pushes. I mean, not all stroke services in the UK at all have access to a psychologist and some of them are very thinly spread. And speech therapists are very thinly spread as well. So then, yeah, there's logistical difficulties there too.   Jerry: Yeah, absolutely. And we definitely have the same kind of issues in the states as well. In terms of access to those services, just so many means at this point across the entire population, so…   Sarah: Yes, this current situation is particularly extreme as well. Yes.   Jerry: Definitely. Yeah, definitely. Can you talk a little bit about the challenges of making those psychological, psychosocial therapies accessible, when someone has aphasia? Kind of the adaptations and types of communication supports you need to kind of weave in?   Sarah: Yeah, that's a really good question. The psychological therapy is traditionally they're language based on the kind of skills that you will be taught in a counseling training, of open questions and don't always work so well, when someone has aphasia. So, speaking, psychologists have to say, well, you need a little bit more skill, that some of the tools that you have don't work so well. So, I think there's a little bit of thinking there. And, yes, I think it's helpful to talk about my fellowship project. So that's the SOFIA Trial. And that's looking at adapting the solution focused brief therapy, so that it is successful for people with aphasia. With that trial, we had an aphasia advisory groups, and it was a lovely group of people with aphasia to advise us on it, and they were very, they advised us very strongly that we should see if we could make it accessible for people with severe aphasia. And I remember the time being a little anxious about this, but I couldn't really argue them, they had a point and was saying people with severe aphasic probably need psychological support more than anybody else, and so often excluded, even in the face of your trials. So, see what you can do, you're a speech therapist, you've got training in psychological therapies, we'll see what you can do. So, we ran a little pilot with people with very severe aphasia. And it was challenging, it was really challenging. Adapting solution focused brief therapy for people with severe aphasia. So, they had receptive and comprehension difficulties. And at the end of this pilot, we got a big thumbs up, though, they said, "this therapy does work, you shouldn't leave people with severe aphasia." So, we did. So, we did include people with severe disabilities. And in fact, I think it's 43% of our participants at securities union. So, we thought about this a lot, for three years now. I'm very happy to share my thinking with you on how we adapt solution focused brief therapy for people with severe aphasia if you'd like me to keep talking.   Jerry: I would love that. That would be terrific. And before you go on, I just wanted to make a couple of notes. You have a 2016 paper about that trial, excuse me, the pilot of that approach.   Sarah: Yes, I mean, this came as quite a surprise to me as a clinician, all the different stages of intervention. So, we've initially did a very tiny proof of concept study with five people who had mild to moderate aphasia. And I think the aim of that trial was just "does it work at all?" And perhaps a more personal level, "Do I like this therapy approach?" And then the little pilot has talked about the severe things yet that's not been published. That's internal pilot within the SOFIA project. I should really write that up at some point, but that's not been published. So yes, that was current work with people with severe aphasia before we do the trial. So yeah, there's been quite a lot of stages before we went into a feasibility trial. And as something that I'm particularly proud of is that we did include people with severe aphasia. And I can add that one of the things we're looking at is do the other different patterns in results in people with severe aphasia or mild aphasia, and we don't think that there particularly are. We think people with severe aphasia also benefited from the therapy. So we're really pleased. It is a different sort of therapy though I would say. So solution focused brief therapy is as traditionally, really linguistically quite complex. So there's cognitively complex as well, there's a lot of question forms, which are sort of hypothetical, conditional features and the other person's perspective. And if you go on a training course, I think most of the questions will seem like they're not really going to work that well with someone with aphasia. And a lot of the tools seem very based in language and very inaccessible, to be honest. So it was, I think what we did with SOFIA was we stretched back to think what are the core assumptions underpinning this approach? And then can we build up in a way that's more linguistically accessible? So, there was quite a lot of taking out solution focused questions and thinking, how can we make this simpler, and then sort of the other way of building up from assumptions? So that sounds really abstract. So, if I sort of give some examples. So, an assumption might be, a solution focused assumption might be that everybody has strengths and talents and skills, even though they're not yet quite aware of them. There are lots of solution focused tools to help elicit people really start to notice those strengths and skills and talents. And one of the things you might do to start a follow up session is say, you know well what have you been pleased to notice about yourself in the last week, so it starts to help people notice what's going well, what can they be pleased about, and I think what I would quite often do with someone with severe aphasia, as a follow up session I might, is have some way, visual way of representing the time. So, they knew the timeframes or looking at their calendar together. And I'll just say, "What are you proud of?" And we'd write down proud, maybe the gesture, and then we would just list five things they were proud of. And that was conceptually, quite straightforward. And then it was easy in speech therapy skills to facilitate them coming back with them, what they've been proud of. So, and it might take a whole, it was super exciting that, you know, if someone was linguistic, didn't have aphasia, that kind of little bit of conversation might take three minutes, five minutes, but for someone with aphasia, it might take an entire session to think of well what are five things that they've been proud of since I last saw you? And I remember one gentleman, he had very severe aphasia, not very much language at all. And he, he went off and he came back with this little wooden stool that he bought. And he, through gesture, he explained that he used this tool to help with his, and he was gardening with his tomato plants on his tiny little balcony. And it was explained with no language that it was just right, because he stopped getting backache, he didn't have to bend over. And then he explained through gesturing and looking at the stool that it was it was a peaceful story. I mean, it was it was a tiny stool. And he explained that he bought it from the local market. And he explained with his purse that he bartered it down, and it was actually only cost him 10 pounds, which is not very much money. And it was functional, it was light, it was the perfect height to stop getting backaches when he gardened his tomato plants. And it was beautiful. It was a really beautiful item. And if you got anyone else to just come down to the local pawn shop, and bought a little plastic stool, he had the kind of, it was just this lovely story that he did something about him that he'd been able to share with me, this little tiny incident in his life of buying this stool that he'd done over the last week, his gardening. And I think it was giving him that space to expand on these little details of his life that he felt proud of, and it was making a space. So, there wasn't very much language involved in that conversation at all. He didn't, there wasn't very much language in terms of my questions, there wasn't very much language in terms of how he answered them. And it probably took him, I don't know, 15 minutes to explain to me about this stool and what it meant to him. Maybe he didn't have very many chances, the rest of his life to expand on those little details of who he was and why this was important to him. So, sometimes I used to think, gosh, it's quite a watered down version of solution focused brief therapy, I'm doing, but there's some quite sophisticated questions and tools that I'm not able to use. And we would tear it back down to sort of this quite essential things. But somehow, it seemed to be quite empowering to have people feel that someone had noticed them, and that these conversations help people feel that someone had noticed what was special about them. And that helped them perhaps notice for themselves what was special about them. Sorry, that was a quite long winded answer.   Jerry: No, absolutely. I just think that's a fabulous illustration of, you know, the support that speech language therapists can provide in that context to facilitate all of that communication. So, you said this is a guy with very little verbal communication. And yet, that's a really complex story that you were able to elicit and really speaks to why, you know, we're well positioned, so to speak, to provide these kinds of supports as well, I just want to make a couple of notes. Referring back to that 2016 pilot, you have some examples of the language that typical solutions, focused therapy would use, you know, the best analogy I could give was, you know, some of those questions are a paragraph long, so to speak, and you've kind of pared that down to a single, you know, less syntactically complex sentence that allows those types of responses and that certainly all of the communication supports to get there in terms of expression.   Sarah: Yes, so at City University, there's a clinical linguist called Lucy Dipper. I do remember having a lovely session with her. And I said, look, I've got these questions, they don't work at all, and then that was quite nice to tap into kind of a linguist's attitude and she was sort of talking through how we could simplify. So that was, and that's kind of what I like about research, sometimes there's all these different angles. So, there's the kind of interpersonal sort of meeting with participants, but then there's the kind of more intellectual thing of how do we simplify this language when you first meet someone. And you might typically say in the first session, you know, this is really quite posing, I'm with your best friend, what would they say, which would tell you that these sessions have been a useful concept they see and know these questions go on, as you say, for a very long time. And we went through question by question thinking how to make them a bit simpler. So, in that case, the very first session, very sort of an opening out trying to explore what's into someone, what do they want to focus on in the sessions? I might write down, you know, we're having six sessions and write down six, six visits. Say, what, what are you hoping for? And then write down hopes as a gesture. And that's a much simpler way of asking someone than some of the typical solution focused. And then what we did when if that was, that's still a very open question, and quite hard for someone with very severe aphasia to answer so, we then we borrowed, like, highlights from everything we could find. So, we borrowed from talking maps. So, I don't know how much talking maps are used in the US, but this is where you, okay? So, he literally goes like here's a doormat, and you have all these cuts. So, we took the doormat idea, and we borrowed from all the research across the world about what it means to live well with aphasia, we got about 12 constructs, things like family, friends, competence, going out. And we thought we would do a scaling that was the sort of not to 10 at the top. Then we would ask people to place these different constructs on the scaling map so how they felt things were going and mostly people even with very severe aphasia were able to do this relatively okay. And then we were to say, what's important to move up from that? And that was relatively, it was very visual, you know, it was literally taking a card and saying, well, the card that I really want to move is this card. I want this card to move up. And it was a surprise, sometimes you'd expect to be sometimes in terms of a card that was already quite high, that was the thing they wanted. And that was I mean, that was just a real start point for the conversation. And I spent hours creating pictures to support these conversations. And what I actually found was most useful when I went along was just paper and pen, because it's so fluid and flexible. And if you don't know where the conversation is going to go, which you don't really with solution focused brief therapy, so very much following on from what I still recommend what they say. So, you can't really know in advance what the session is going to look like. Paper and pens and objects in the environment and just sort of being creative. So, making sure they have their own paper and pen, so there was a sort of an equality there. I did a lot of drawing and terrible drawing, I did a lot of drawing and sessions, and then making use of whatever they had that they were comfortable using. So especially these days, with smartphones just being amazing, and there was this gentleman who prior to his stroke, he used to go to art galleries, but it was only after a stroke that he learned to paint. And we had some lovely sessions with him putting up various paintings on his phone and showing me. Although there was a lady with severe aphasia, where during the week, she would take photos and things that she wanted to share with me because she was pleased about. So, she would take photos of the various meals she'd cook during the week, and she would show me on her smartphone. So, we kind of, again, that's free speech therapy isn't it, that's what speech therapists do all over the world, you make the most of the skills that the person with aphasia has. And it just goes, I just love it when you get to a stage where you don't actually notice that someone has aphasia anymore, you are just having a conversation, and it just happens to look slightly different from the conversation if they didn't have aphasia. But yeah, and that's a part of solution focusing as well, to make the most of it, to capitalize on people's strengths and what's going on.   Jerry: Absolutely, what a great description. I just want to highlight some of those things that you talked about just a, you know, a toolbox for facilitating or supporting that communication within that solutions focused intervention. So, you talked about the talking maps, just a fabulous tool, and you even mentioned personal modifications in photos that you added, the rating scales, obviously really powerful written choice. You mentioned earlier, writing down those key words, doing some great drawings of your own. Yeah, and then phones are just so powerful, you know, so easy to pull out and just shoot. So that really speaks to how you get at all of that language exchange when you are talking with someone with severe aphasia or with, you know, difficulty expressing.   Sarah: And I guess we kind of, we pulled on the bits of solution focused brief therapy, which are more visual. So, scales are often used in traditional therapy. So, as solution focused therapy would have, say, if someone really established that what they really were hoping to focus on was confidence, then for a scale you might have, ten would be they're feeling really confident, and zero is the opposite. So, solution focused, you would tend to invite someone to place themself on that scale. So, if someone doesn't have aphasia, you tend to do all this scaling work verbally. But I would reach for my scale and I would do all you know, write one to 10 on the scale, and then I would tend to write confidence as a key word at the top of the scale and then they would, after they place themselves on whatever is true. What I quite like about solution focused therapy with rating scales is that use that then as a tool to help elicit what's already working well. So, you would spend quite a lot of time then, "well how come you're a three and not a two?" So what score, and then listing is lovely, because it's quite conceptually easy. And it's a quite a natural way of writing down key words. So, I tend to spend quite a lot of time looking at what's already going well. And then it's very nice and visual to just then have a little area again, one step up to four. So, what does four look like? Again, these are very open questions. And sometimes, you know, you have to really scaffold much more than you would do if someone didn't have aphasia, might try different options with a partner as well. You know you get to know what people want, and what works for them, and some people found these very open questions hard to see how to scaffold it. But I still think that there's something quite nice about these visual scales, what does this look like when you start to scale?   Jerry: Absolutely, really powerful tool. And like you said, those comparisons of, "why weren't you a three? Why are you a four? What would it take to get to a five?" Open ended, but gives them the direction to say what they want to say, rather than us constraining that. So just to kind of follow that track of kind of delivering focused brief therapy, and then maybe some of the challenges that you encountered? Can you share a little about that, your experience?   Sarah: Would it help if I talked a little bit about what is solution focused brief therapy?    Jerry: Yeah, why don't we start there? Yeah.    Sarah: It's just one of many psychological therapies. And I have to say, I think my start point for the project was, was probably just, I want to show that it's possible to adapt psychological therapy, and I want to look at the role of speech and language therapists, and I've happened to do it through solution focused brief therapy. I think solution focused brief therapy aligns quite well with my speech therapists’ sort of values of what they want from their work. And it's, in the UK is already quite used by speech therapists. And I think they find it's an approach that they can integrate with other language therapy work, they quite like it. So that was one of my reasons. And also, I had a little bit of training in it before I started my PhD. So, it was sort of on my mind, a therapy approach that I liked. So, to tell you a little bit about it, it originated in America, a family psychological therapies, and it started with Steve De Shazer observing, was one of the originators of the approach, observing family therapy sessions. And he noticed that most of the time these sessions were spent looking at the problem. And just occasionally a bit of therapy time is spent looking at exceptions to the problem. And his observation was that when session time was looking at these exceptions, it seemed to be associated with more progress. And that was kind of the seed of the therapy approach. So, there's a strong part of the therapy approach that says, well, whatever the problem is, there are usually times when the problem is less bad or not even there, and if we look at those times, what's happening then, perhaps that can be the building blocks to help people move forward. So, I would say as an approach, it's less interested in diagnosing problems and looking at problems, and it's more interested in noticing where people want to move towards, where they're wanting to get to. And it's less interested in problem solving and looking at what's going well, what's already going in the right direction that we can capitalize on. And I think, for me, a quite an important part of the approach is this idea that the client is the expert in their own life, not us as therapists, but it's for the client to know what's important to them, what matters to them, where they want to get to. And it's our role to help them work at how they want to move forward. So, that sounds quite straightforward. But actually, it's really quite hard to sort of sit on your hands and not give people advice and not stop to give people advice and tell people what to do. We'll not give people suggestions, but just to, to trust that they will have the resources within them to find their own way forward, so it's our role perhaps to facilitate that happening. And I think there's quite, there's a slight misconception, I think about solution focused brief therapy, that it's a very half glass full approach, and it's not really noticing, not giving space to the problems. And to be fair, sometimes that is how it's applied. And I think I felt really strongly in SOFIA that wasn't what I wanted. From my experience of delivering the approach, I think when someone's had a stroke, and you're a speech therapist, often, sometimes you're the first person ever really had the chance to really talk through what that's like. And I think that type of acknowledgement was always an important part of the approach for me. So, there's a sense of, some people have described those particular solution focused writer who does talks about one particular acknowledgement and one certain possibility, but I've always really liked that as the kind of metaphor for a sense of spending session time really listening to the person and being there with the person and then sort of shifting away when you feel it's right to think about possibility, and helping them to work out how they can live with it. And having belief and hope that it is possible to live with it too. So, there's sort of oscillating between the acknowledgement and possibility and I think that's been, well for me that's an important part of the therapy that we delivered in the trial. This sense of giving people space to talk about what's hard. And I think unless someone's feeling that you're really listening to that, it's quite hard for them, perhaps to want to trust you to make, to talk about how they're going to move forwards. Jerry: Yeah, terrific. Just to highlight some of those key points, that idea that client is the expert in their life and how they live their life. And we really need to inhibit giving our own solutions because they have the capability of coming up with their own. And I just love those two frames, acknowledgement and possibility. So, yeah, terrific. What kind of challenges have you run into in terms of delivering that? Sarah: So, there were three therapists delivering the therapy in the project and I was actually just reading through the interviews quite recently with the other two therapists. So yeah, I had lots of different hats on in this project, which is quite interesting. I think what was positive was that they found a very enjoyable therapy approach, delivering a rewarding and I thought it was feasible for speech therapist to deliver it. I think that where it was more challenging was, I think I found couples work more challenging when I was working with the couples. And I think for me myself, because I have had high quality training in solution focused brief therapy and psychological therapy. And I think for me, I really benefited from that additional training. I think it is you know, we're not couples’ therapists. I think you can feel uneasy going into a session working with a couple where there is a sort of disharmony. So, I think maybe I sort of extra support for therapists in that situation. I think the therapy approach can work quite well, while I think it is challenging. I think the other thing that's challenging is when there's more severe distress. So, in the fellowship project, people could take part whether or not, whatever their skills and developing skills. So, there was a lot of people actually in the project who had a very high developing skills when we started the project, which is quite interesting because the therapy approach is really designed for people with high, you know it was designed helping to make change in other people who didn't really want to make the change happen to everyone which had its own challenges. But the people who were very distressed, I think there was a sense that they needed some real time support to help them to handle that and feel reassured that if someone was really that concerned about their mental health, that they have somebody to turn to. And I think that's really important that we're speech therapists, were not mental health professionals. And if you're working with someone, you think that, yeah, he's got mental health issues that you're concerned about to know that you've got back up somehow and you've got someone that you, it's just not all on your shoulders. So, I think that was a challenge. As I said, this is a challenge that we hadn't anticipated, that there would be people in the project who were really content in themselves, that they found a way to live with their life and they're taking part in the project because they were curious and wanted to contribute to research. And so, they did the therapy with us. And the therapy is designed to help people build change. And these are people who felt a way to live. They didn't really want to be making change. But there was one lady I worked with, a lovely, lovely, lovely lady and by the end of therapy, her first therapy session said, you know what, you seem to be, you know, you found this lovely way of living. Do you want me to come back to do the other five sessions? And she was very keen that I did. And she'd taken part in the project, it was her right to have these sessions. So, she had all six sessions. And then I guess, well, they were very special sessions. We very much sort of more future focus, looking at how you want to be shifting your life going forward wasn't really that much of a thing for her because she didn't. She was very frail and elderly, but she found a way to live with her things in her life. And so, we did a lot of time noticing everything that she was later a very special person. And I remember those were quite profound sessions really, I felt there was a real connection that she wasn't looking to make change. And whether it's quite hard in terms of the project, talking to people in the project who don't want to make change. This clinical trial is all about making change. But I think sometimes there is a value in conversations which don't necessarily lead to change, but there is something about the connection there that's important. Jerry: Absolutely. Just kind of affirming the path that you're on. And like you said yourself, that human connection definitely may not measure the same way, but definitely important. When you were talking about that idea of people that have clinician’s kind of having that back up, it just kind of reminded me of Ian Kneebone's stepped care model and how that is to know, you know, when you're kind of, when you need to hand it off or at least collaborate with someone else for those higher level needs for sure. Can we talk a little bit about the SOFIA trial and kind of where that played in? Sarah: Yes, of course. So, the SOFIA trial was the feasibility randomized control trial and so is underpowered to definitively answer, is this therapy approach effective? So, the questions instead that we're asking from is, is this going to be feasible to scale up into a definitive full scale trial. So, we look at can the approach do this okay? Can we retain people within the project, if we do the assessments right, if we've got the training and support for the clinicians right? Is the therapy approach acceptable? Is it acceptable to deliver this as speech therapists? So, these are the sort of questions. And we recruited 32 people, half of them were randomized into the immediate intervention group. And we had to weight this design so half of them receive the intervention at six months. So, this is a group of 32 people. And in the end, two people withdrew. So, we have 30 people stay to the end of the trial and received therapy. And it was mixed methods. So, we interviewed all 30 of them. So it was, it was very interesting. And it's not so much about you know, have do people with aphasia experience receiving a psychological intervention. So that was a really interesting interview to read and it's quite an exciting stage. We've finished the trial and we were very lucky in the sense that we did our final assessment visits before COVID. And it's a bit poignant reading the interviews because it makes you wonder how people are over the last few months. But yes, so we're at the stage where we've pretty much finished all the analysis now. So, we're just about to start submitting. I don't know if you'd like me to share some of the... Jerry: I was going to say, can we get a little sneak peek maybe before those papers come out? Sarah: Yeah, that would be my pleasure. So, in terms of feasibility outcomes, since it's a feasibility trial, we were really pleased that the primary comparison point, the six months randomization and at that point we collected outcome measures from 30 to 32 people. So, 97 percent, which has really exceeded our expectations. And in terms of people adhering to therapy, so two people withdrew, and so out of 30 people who received the therapy, 29 of them received all six sessions, and one person received five. And to adhere, researchers said they needed to receive at least two, so all good. We recruited on time and on target. And I think there was, we were lucky, and we had a nice buy in from our sights, and I'm so grateful to our sights. And I think they kind of, the speech therapists I they were just really pleased to have a project that they could refer in people with severe aphasia. So, they were very supportive. And, yes, in terms of sort of any outcome measures, primary outcome measures, it seems to work fine. We have minimal missing data. So, thumbs up in terms of the feasibility outcomes, which is so lovely. In terms of the qualitative data, yeah, overwhelmingly the participants liked it. So, I think we can say it was a highly acceptable therapy. There were some kind of things that came through in terms of what they valued about the therapy; they valued having someone notice their achievements and what was their successes, they valued being able to have someone listen to them talk about their hopes and what they were hoping for, for in the future, they valued being able to share their experiences and their distress and have someone listen to them, and they valued connection and companionship. Some of them said one of the best things in it was having fun, having a laugh with a therapist. And that's something I really liked and that's what I really valued. And it came through as this really big thing, their relationship with the therapist, and how that was important when you're going to be a part of therapy for them. In terms of changes, not everyone was wanting to make change. But people talked about you know we have some nice things in terms of feeling better in themselves, in terms of sort of being more able to talk to family and friends, going out a little more. And then we sort of sectored people into four groups in terms of how they respond to therapy. So, they were one group we said was the changed group. So, these are the group of people who the therapy came at a really good time for them. Just constantly it had come at a time when they were in need of some kind of, not a need, but it really benefited them having this therapy approach. It led to sort of meaningful impact for them in their lives. And that was about a third of the group. And then there were two small groups of about five people in each group. There was one group where they called the complementary group, where they were on an upward trajectory, they were making a lot of progress, And the therapy, the research project therapy, was one small part that and I knew that they probably would make an upward projection anyway, but it was a positive thing and it helped them on their way. But we called it complemental. And then there was another little group of about five people that we called discordance. So, they were people who the therapy was misaligned, they liked the therapy and they like their therapist generally, but the therapy was misaligned of what they were looking for. So, they wanted language therapy. They wanted empowerment work. They wanted someone. We weren't at the end of the day psychologists, we were speech therapists, we could have done many therapies with them and that's what they wanted. We did solution focused brief therapy. So, there was a sort of mismatch and they were a bit you know, they wanted exercise. And it's frustrating to kind of think in clinical services, you could have given them that and done solution focused brief therapy around the edges perhaps, would have perhaps part of it for some of them is coming to terms with what they could and couldn't do with the aphasia and that. And then there was another group. It was about a third of the group who we called the connected group, and they weren't looking to make changes from the therapy. They weren't coming into the project trying to, with the idea, and our whole concept of change to come from us as researchers really. They came out of curiosity of contribution and what they really valued was this connection with the therapist, and we called them the connected group. They really liked therapy, the highly valued it, but it was about the connection of the therapist rather than wanting to shift or make changes. And to be fair, I think we found the ending of therapy the hardest. And it made me feel that there's the duty of some kind of ongoing support, which wasn't part of the trial protocol. But I think for them it was, yeah, if I had to run this trial again and if we had people in that sort of connected group, I would think, what kind of, is this important that a part of this is looking at? So that's qualitative. And in terms of the clinical outcomes, as my statistician keeps telling me, he is very much on feasibility trial and the power, but the primary outcome measure, the primary comparison point, which is six months post randomization, it seems to be going in the right direction. But, as my statistician keeps telling me it is the small groups and we can't ever extrapolate from the statistics, but it does seem to be promising. Jerry: Well, that sounds great. I was going to ask you a little bit about the implications of these findings to everyday practice. I think you kind of touched on that. Any kind of takeaways or thoughts on that piece? Sarah: Like I said, it is really encouraging that the speech therapists on the trial found it a positive therapy to deliver. So, it does suggest that speech therapists, who have an interest in this area, if they get training in a kind of brief psychological therapy, it is a possibility. And I would say that sort of the therapists in this trial did have monthly clinical supervision as well as quite a lot of initial training, and they had real time support when they needed it too. So, they had that sense that they felt quite nurtured, I think, within the project. And that was important. I would say the theme of feeling connected just speaks to value that the participants placed in being able to share how they were experiences to suggest that that kind of active listening and being there with someone and sort of listening to how someone is, that's of real value. And if a speech therapist has done that in a session, they should probably come away from that session feeling really proud that they have done something important. And I suppose my other thing is I'm a believer in this joint work between mental health professionals and speech language therapists. And I think going forwards, I know I've personally really valued from it, having mental health professionals in my supervisory team of EBSCO, I urge them for advice and having a kind of clinical support as well. And when you're feeling someone is very, very distressed in recognizing that as a speech therapist, that's fine. And that much of our role is working with mental health professionals. Jerry: That's terrific. I'm looking forward to reading those papers when they come out. Sarah: Thank you. Jerry: I'm on the edge of my seat for sure, it is really important work. In the meantime, is it okay if we share, you have a severe trial resource page, is it okay if we share that link with our listeners? Sarah: Absolutely. Yeah, thank you. Jerry: Excellent. Well, I could continue this conversation all day long, so probably better wind it up. I'm wondering, I just want to give a nod to this as a little bonus. Would you be able to share kind of a nutshell little version of your work on befriending in the SUPERB trial? Sarah: Yes, of course. So, the SUPERB trial has also just come to an end and they're also just writing up papers and yeah. So, that's where people with aphasia, where Mastrov befriended people who have recently come out of hospital with aphasia and the feasibility outcomes, again very, very good and strong in terms of the clinical outcomes. Really encouraging again, the statistician saying we can't over play these. But it is looking very encouraging in terms of the primary outcome measure, which is marriage, and preventing people becoming depressed. So, within SUPERB it was only people who scored as not depressed who were eligible to take part. And in terms of follow up, a 10 month follow up, it does seem that there's a difference between groups in terms of how many people results, in terms of the clinical outcomes and in terms of the qualitative side which is the side I've been most involved in. Encouraging. Yeah, there seems to be something special about an intervention delivered by people with aphasia. And at the end of the day, they can offer something that me as a health professional I can't offer. And yeah, a unique understanding and ability to empathize from having lived with the aphasia, some sort of sense of role modeling as well. This is, it's possible to live with this particular guilt, with the part of the data of experience of the defenders. And I would say that I found it a very challenging intervention to deliver, all of the logistics of organizing appointments and organizing the travel, and it can be quite challenging in terms of if the friend, the person receiving the befriending is upset or changes their mind about wanting intervention. I think that's quite hard, but they found it a very rewarding intervention to deliver and I found it very satisfying that something that was really painful in their life, but being able to use to help other people. And I think that was quite powerful. And I think they felt very pleased to be involved with the trial. And I think what they would highlight is that they were very it was very satisfying experience for them. And they thought it was making a difference, that the supervision and training was really important. And I think the real time support, as well as if they were feeling a bit stuck, that they knew they had someone and they got peer support so they supervision in the group, and I think that was really valuable. I sat in with the person doing the supervision, and I think she was wonderful. So, I think it was a lovely intervention. Jerry: Wow, that's terrific. Again, waiting for that one, too. Well, this has been a fabulous conversation. So, on behalf of Aphasia Access, we thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials, go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.     Resources:  SOFIA trial resource page: https://city.figshare.com/collections/SOlution_Focused_brief_therapy_In_post-stroke_Aphasia_SOFIA_feasibility_trial/4491122    On behalf of Aphasia Access, we thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org If you have an idea for a future podcast series or topic email us at info@aphasiaaccess.org Thanks again for your ongoing support of Aphasia Access.

Janet Patterson, Ph.D., CCC-SLP, Chief of the Audiology & Speech-Language Pathology Service at VA Northern California, speaks with Jessica Richardson, Ph.D., CCC-SLP, about aphasia, neural recovery, treatment outcome measures, and discourse, all at the center of her study to improve communication and life participation in persons with aphasia. These Show Notes are an abridged version of the conversation with Jessica. Jessica Richardson, Ph.D., CCC-SLP is an associate professor and speech-language pathologist in the Department of Speech and Hearing Sciences at The University of New Mexico. She is director of the Neuroscience of Rehabilitation Laboratory, the SPACE (Stable and Progressive Aphasia CEnter) within, and the UNM Neurochoir. She is also Outreach Director for the Center for Brain Recovery and Repair at The University of New Mexico Health Sciences Center. Her research focus is on improving assessment and treatment for adults with communication disorders following acquired brain injury (e.g., post-stroke aphasia, post-TBI cognitive-communication disorder) or due to progressive disease (e.g., primary progressive aphasia) in order to improve participation in everyday life activities. Her lab also studies the impact of brain stimulation on brain structure and function, as well as on behavioral outcomes, in these populations. She uses structural and functional neuroimaging (e.g., EEG, MRI) alongside narrative assessment (and other behavioral measures) to identify diagnostic biomarkers and/or to characterize recovery, disease trajectory, and response to treatment. Dr. Richardson is a 2020 Tavistock Distinguished Aphasia Scholar, USA. In the comments and highlights Below you will read about Jessica’s work and the influence the Tavistock award has had on her career. Janet: How has being named a Tavistock Distinguished Scholar USA for 2020 influenced your continued work in aphasia clinical research? Jessica: This award has reenergized my work. As we go along in our careers it can become easy to lose track of our mission and, as I did, begin to ask why I am following this path. The Tavistock award has a focus on helping people change the lives of people with aphasia, and  receiving this award reminded me of my mission and why I am here doing what I do every day, especially in 2020 which we all recognize posed an extra challenge to life. In addition, the Tavistock award supports networking with people around the country and the world to talk about ideas and building a bright future. Janet: Much of your work in aphasia has focused on measuring discourse production in persons with aphasia, in particular, conveying main concept information. How do you see production of main concepts in a discourse event as important in supporting successful communication between persons with aphasia and their communication partners?   Jessica: As you know, there are hundreds of discourse analysis measures out there. I began examining discourse using Brookshire & Nicholas’ CIUs – a measure that has power and limits and that clinicians both love and do not love. Brookshire & Nicholas also wrote about using Main Concepts as a measure of discourse and after reading about it, I was hooked! However, I could not find any tools using Main Concepts and so decided to do something about that. Communication requires that we give and receive information and the idea of Main Concepts focusses on packaging the gist of the information so partners will understand each other. If the packaging is faulty then the communication can be poor or can fail. Measuring and targeting how people package the gist of what they want to say is useful for our patients. Main Concept Analysis in assessment of person with aphasia is a psychometrically sound procedure, and clinically useful, but it only takes us so far because information has to also be organized. My team and I are expanding Main Concept Analysis by looking at story grammar and sequencing, using Main Concept Sequencing and Story Grammar Analysis because we know the packaging of the message is as important as the content. Janet: Clinicians working in a busy practice may find it challenging to add discourse measurement and treatment to their treatment plans for persons with aphasia, especially if the measures require a bit of time to administer or score. What advice or suggestions can you give to our listeners about how they can efficiently include discourse measures in assessment and treatment? Jessica: Another measure I have worked on is the Core Lexicon. Here is my message to clinicians: Dear Clinicians: Many researchers are dedicated to working on development of clinically useful discourse measurement. I am proud of recent work we published on utility Main Concept Measurement because it is clinically useful and does not require phonetic transcription. Our checklists and scoring methods are readily available to you. Other resources on discourse analysis available to you are a recent issue of Seminars in Speech and Language; a link in Aphasia Bank; FOCUS: Aphasia (Fostering Quality of Spoken Discourse in Aphasia). If you have questions about a measure and how to use it, do not be shy about reaching out to the authors. Janet: Another area of clinical interest to you has been using transcranial direct current stimulation, or tDCS, as a treatment technique. Here’s a multiple part question for you about tDCS: how does tDCS work; how do you use tDCS in aphasia therapy; and how can it enhance communication skills in a person with aphasia? Jessica: There are long answers to your questions that we could spend hours discussing. Let me give a short answer here. tDCS can modulate your brain; it is called neural stimulation but it is best to think of it as neuromodulation. tDCS does not make neurons fire or stop them from firing but modulates the ‘soup’ within which these neurons are firing. Electrodes are placed on your scalp and electrical current passes through your scalp and through your brain, and influences electrical communication that is already happening between your neurons. In aphasia therapy we pair tDCS with behavioral therapy with the goal of modulating electrical communication between neurons that is already happening during treatment tasks in hopes that you can encourage more involvement of desired brain areas and downplay involvement of less desired brain areas. So far, the most positive effects have been seen with naming treatment. We are in the early stages of pairing tDCS with discourse treatment and have promising results. The work I am doing now combines two areas of research that I love: brain stimulation and discourse, and I am happy to have received a grant to further my work in these areas. Janet: tDCS works together with behavioral treatment. How do you see tDCS fitting into contemporary aphasia treatment to support functional communication and life participation for persons with aphasia? Jessica: I think this technique shows promise and will help reveal untapped recovery potential. For so long we focused on the brain lesion: the site, the size, what it can tell us about what a person can and cannot do. However, the lesion is not a modifiable factor, and the focus should be on things that are modifiable. For example, we have not focused on or had the tools to examine the rest of the brain. What does the health of the rest of the brain tell us about what a person can or cannot do, and how much a person might improve? There are many observations about the rest of the brain that are important and perhaps tell us that these areas are not as intact as we thought. They may have low blood flow or be less connected, and these states may be modifiable. This suggests that we should use every tool available to us to aid recovery, including behavioral treatments, neuromodulation, and variable treatment dosage Using all the techniques available to us will help us push the recovery curve higher and longer, including focus on connected speech, which in turn, helps improve life participation. Janet: That is, as I see it, the heart of LPAA: where does the person with aphasia want to go and what are the pathways that can be used to get there? Certainly, using every tool available to us is important in planning treatment.  Jessica: Yes indeed. A new avenue of investigation for us is remotely supervised tDCS. This project will help us understand both tDCS and remotely supervised behavioral and neuromodulation treatment delivered in the home.   Janet: The pandemic of 2020 has taught us many things, including the value of virtual treatment for individuals, including those who have aphasia. Your work in remotely administered tDCS fits nicely with this changing view of treatment delivery. Your work in aphasia also encompasses several person-centered efforts. Tell us about some of your translational research and clinical projects such as recognizing the efforts of caregivers, examining fidelity in assessment and treatment, creating an aphasia choir, and investigating treatment dosage. Let’s start with your interest in supporting caregivers, what have you discovered? Jessica: First I would say caregivers are grateful to be asked about themselves. They are used to answering questions about their family member and appreciate the focus turned on them. Second, they are tired and want to rest. Third, they are in need of information about how to provide care for someone else, and how to do self-care. We discovered other interesting themes such as depression, quality of life, and fatigue. Addressing these issues is important to life participation because as we all know, life participation is not just about the person with aphasia, it is about the unit in which the person with aphasia lives. Janet: You make excellent points, Jessica. Several years ago my colleagues published a paper asking caregivers what information they had and said they wanted. The data suggested there is a gap between what information we think is being given to caregivers, we as speech-language pathologists and other medical professionals, and what caregivers think they are being given. It is a gap that should be filled. Another area of interest to you is assessment and treatment fidelity. When treatments are modified, sometimes without a clear foundation, it becomes difficult to track if the treatment is being delivered in the same way and that a clinician is being internally consistent. Fidelity in both assessment and treatment is important in assuring the best possible outcome for a patient.  What would you like our listeners to know about your work in fidelity? Jessica: This line of research came about in an interesting way for me, from thinking about it for a grant proposal, leading a roundtable discussion, and now investigating more closely. One thing I would like listeners to know is that it is important when reading a report of clinical treatment research to read carefully to determine that the treatment was carried out with a high degree of fidelity. If it was, then the stud is more likely to be replicated and the results are more believable. Researchers should think about fidelity as they design an assessment or treatment study; adhere to principles of fidelity during the project; and report their fideladventureity results. Clinicians should know that the manuals and operational steps available are important for interpretation. The example I sometimes give is that if one wants to use the results of an assessment procedure, for example to compare to the population listed in the assessment manual, then the assessment should be given exactly as described in the manual. If one has to off script, which certainly happens in a clinical environment, one must make note of those changes and consider that when interpreting the assessment results. The other note I want to make for clinicians is that if one finds oneself frequently making a change to an assessment or treatment protocol to accommodate a patient or situation, then the field needs to know. This is practice-based evidence (PBE), helping authors and researchers know how protocols should be updated or changed so that other people can implement it with greater effectiveness. Fidelity supports hearing more form clinicians through the PBE side instead of just the EBP side (Evidence-based practice). Janet: You are absolutely right, Jessica. Now let me ask you about your aphasia choir. Twelve years ago, I saw one of the first aphasia choirs begin at our site at California State University, East Bay. It was quite an adventure watching the unique choir members with aphasia navigate aphasia and music to become a unified choir. Two years ago, I gleefully (pun intended) watched your NeuroChoir post their first video – what a joy it was. To watch – all of you on the screen and singing away – impressive! Tell me about how your choir evolved and also how it continues to meet, especially in the midst of this pandemic? Jessica: I love our choir. There are so many aphasia choirs and it is great to hear that you were there for one of the first ones. Our choir began in 2016. I have a musical background which made me less fearful to begin and lead a choir than I might have been. We needed something more in our community or people with aphasia and I wanted to help provide that. We welcome people with any type of brain injury, not just aphasia, and although our membership waxes and wanes, we do have a core group of individuals who attend. During the pandemic choir has been a challenge. Singing together in a virtual environment does not work so well because of the audio and visual delay, and logistical issues such as people talking over each other. During our choir time we play musical games and other activities; everyone but the singer is muted; and we certainly long for the days we can meet in person again. Choir is different now, but there is still joy. Janet: In your video, I can see that in your faces and hear it in your voices. Talking with you today is a smorgasbord of mutually interesting topics and a fun discussion of translational research and clinical ideas, and how our worlds have intersected over the years. Moving to another topic of interest to both of us is treatment dosage – how to figure out how to deliver treatment in just the right amount so the result achieved is a positive outcome. That is, not giving too much treatment – more than is needed, or too little to effect an outcome. This is a tricky question with no easy answer. What insights have you learned in your work?    Jessica: This topic kind of hurts my heart, Janet, because we need more. More research into treatment, more treatment hours in a day, more treatment days in a week, better treatment schedules, remote treatment so patients can work at home, more inclusive founding mechanisms, more conversational partners and settings – we just need more. If one looks at the literature on animal learning, which I realize does not always directly apply to humans, we are nowhere near the number of repetitions or hours spent in treatment to produce those amazing results that have hacked into the neuroplastic principles. If we are really wanting to apply neuroplastic principles to research and clinical practice, which we should do, we have to find ways to facilitate this idea of more. At this point I look on this with sadness as there are so many obstacles to doing the “more” part of this. It will be critical in the coming years to get creative as a community to advocate for research into treatment dosage. Janet: I think you right about that. Add into your thinking that individuals are so variable that a dosage one might think appropriate for one person might not be so for another person. I can see how it hurts your heart and there is certainly a long way for us to go to figure out answers, however it is a worthwhile endeavor. Jessica, as you can tell form our conversation today, it has been so much fun to talk to you about our interests and your work. I am impressed with your work and dedication to serving people with aphasia. As we come to a close, what success stories or advice or lessons learned would you like share with clinicians working with people with aphasia using an LPAA model, across your clinical career, y our research career, or just across life in general. Jessica: That is a good one to end on. I would say first, there are lots of tools out there through Aphasia Access and other resources, so many that it may become overwhelming or difficult to navigate. When that happens, reach out – to people, organizations, and any source. The other issue is barriers to using the LPAA model. Sometimes one is in a place where there are barriers to implementing your ideas – I have certainly been there. Sometimes you have to move the barriers and sometimes move yourself to a place where those barriers don’t exist; moving professionally or ideologically. Sometimes however, one o the barriers might be yourself – are you getting in the way of implementing your ideas. I say that from experience as I had to get out of my own way to make progress. The last thing is to plead with clinicians to keep using your voice to advocate for people with aphasia. There are researchers who are clinically minded and they are wanting to listen to you and learn from you – your voice, your experience, your front line work with persons with aphasia, your barriers, and your victories in LPAA. Your voice and your viewpoint are valuable and influential, so please keep raising your voice because it has and will continue to influence the questions being asked in a positive way.   Janet: Thank you Jessica. That was a terrific response and an uplifting way to end our conversation today. It is clear that you have vision for how you would like to address the questions we have been discussing. I feel the enthusiasm coming across the airwaves and I hope our listeners will feel that as well and reach out to you if they have questions or comments. Thank you for your thoughtful responses to my sometimes-perplexing questions. This is Janet Patterson, speaking from the VA in Northern California, and along with Aphasia Access, I would like to thank my valuable guest, Jessica Richardson, for sharing her knowledge, wisdom and experience as a clinician, researcher, and advocate for people with aphasia.  You can find references, links and the Show Notes from today’s podcast interview with Dr. Jessica Richardson at Aphasia Access under the resource tab on the home page. 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 email us at info@aphasiaaccess.org. Thank you again for your ongoing support of Aphasia Access.   Links  Publications: https://www.ncbi.nlm.nih.gov/myncbi/12WPcJZAUeOAR/bibliography/public/ Websites: https://shs.unm.edu/people/faculty/jessica-richardson.html http://www.jdrichslp.com/  YouTube:  https://www.youtube.com/channel/UCTQah61XG76Pt3PIKJvyB0A/playlists

Ellen Bernstein-Ellis, Co-Director of the Aphasia Treatment Program at Cal State East Bay in the Department of Speech, Language and Hearing Sciences is the host for today’s episode with our guest Dr. Liz Hoover. We’ll be discussing gaps in aphasia care identified by Dr. Nina Simmons Mackie in the 2017 White Paper and how Aphasia Access and we, as a community, can work together to address these challenges. Dr. Liz Hoover is a Clinical Associate Professor at Sargent College of Health and Rehabilitation Sciences and the Clinical Director of the Aphasia Resource Center at Boston University. She holds board certification in adult neurogenic communication disorders from ANCDS. Her research and clinical focus is on group treatment for aphasia. She is a founding member of Aphasia Access and is serving as the 2019-2021 board president.   In today’s episode you will: Find out how the Aphasia Access White Paper can be helpful to a student, clinician, researcher, or instructor. Learn about the gap areas in aphasia care identified in the White Paper and some current endeavors and future plans to address these needs. Gain understanding how these gap areas impact clinical services and how all stakeholders can address service gaps to improve the lives of those impacted by aphasia. Learn some exciting initiatives set by Aphasia Access for 2021. Listen to Dr. Hoover’s perspective on the value of kindness as we support our clients and each other through these challenging times. Today’s show highlights 10 gap areas outlined in the Aphasia Access White Paper authored by Simmons-Mackie. (Complete citation at end of show notes.): Insufficient awareness and knowledge of aphasia by health care providers and the wider public Insufficient funding across the continuum of care Insufficient availability of communication intervention for people with aphasia Insufficient intensity of aphasia intervention across the continuum of care Insufficient attention to life participation across the continuum of care Insufficient training and protocols or guidelines to aid implementation of participation-oriented intervention across the continuum of care Insufficient or absent communication access for people with aphasia or other communication barriers Insufficient attention to depression and low mood across the continuum of care Lack of a holistic approach to community reintegration Failure to address family/caregiver needs including information, support, counseling, and communication training “While significant advancements have been made in knowledge of aphasia and evidence-based management practices, gaps in services for people living with aphasia remain significant. These gaps create substantial personal, financial and social costs to people with aphasia, the people who care about them and to the community at large. With appropriate and sufficient services, the goal of enhanced life quality for those living with aphasia is achievable. The time is now for all stakeholders to come together to address service gaps and lead the way to a better life with aphasia.” Simmons-Mackie, Aphasia Access White Paper. (p.126)   Transcript edited for conciseness   Interviewer: Ellen Bernstein-Ellis   Liz, I am just delighted to have this conversation with you today. It’s an honor to have this chance to interview you.  Our book clubs have collaborated a few times. Our most recent book was Deborah Meyerson's book Identity Theft: Rediscovering Ourselves After Stroke.  But our connection goes much farther back than that because you're the author of a book chapter in The Manual of Cooperative Group Treatment for Aphasia, edited by Dr. Jan Avent, that you wrote after your participation as a clinician in the Aphasia Treatment Program (ATP) as a master’s student, and that book is our Bible in terms of guiding an introduction to Cooperative Therapy, especially as I started at Cal State East Bay. So, your roots with group treatment start back in your graduate training under Dr. Avent’s mentorship. I think we both want to give her a shout out today.    Liz Hoover   Yes, yes, absolutely.   Interviewer   I consider her a talented mentor and a friend. And I was wondering if that early clinical experience motivated you to pursue research and group treatment?   Liz Hoover   Absolutely. She is just an unsung hero, in our community. She was such a mentor, such a generous professor. She was so impactful in shaping ideas about participation-oriented treatment, about making an impact in living successfully with aphasia, back many years ago in the early 90s. Just her wealth of knowledge and wisdom and sharing with what we now know as those luminaries in LPA movement back then. I cut my teeth on group treatments, so to speak. Thanks to her leadership, I grew up in the community not really realizing that there was any other way. So, what a start to have had in the field, right?    Interviewer   Absolutely, she has been an inspiration for me in my career, that is for sure. I'm glad we have this opportunity to give her some acknowledgement.  Today, we get to talk a little bit broader about some areas of aphasia care that we both feel strongly about. But before we get there, I have a question for you. We, the podcast committee, have been talking a lot about adapting to a changing world, and thinking about how to set the agenda for this year. Right now, it's COVID that has been the catalyst for change in terms of service provision. Would you like to comment how COVID has prompted changes to your practice or your program?   Liz Hoover   I think we're like many others around the country. When the state of Massachusetts went into lockdown during March, that was actually the week of our spring break. We were told, as we went off to spring break, spend the week figuring out how to continue if we don't get to come back. And that's, of course, exactly what happened. We had a week to figure out if we could move our practice onto a HIPAA zoom platform. We needed to quickly, through Massachusetts licensing laws, get 10 hours of telehealth continuing-ed practice that week, so that we were in compliance. We launched, literally, that Monday with groups. We didn't miss the group experience in the semester for many of them.  There were some groups that needed adaptations. So, our aphasia community chorus group, was a challenge to do via HIPAA. So that shifted more to a music appreciation group with some soloist performances, and some choral, but the timing is really difficult over the zoom. So that was one that needed some adaptation. But it's been a really interesting journey to experiment with different flavors of our groups.  Another happy side effect of this or the COVID, a silver lining, as people are starting to call it, is that we've actually been able to welcome some new members due to the changes in the telepractice law. We've had people join us from Connecticut, New York City, Vermont, further north in New Hampshire. Our access has expanded quite considerably, thanks to the telehealth.   Interviewer   That's a really fast turnaround that you all managed. We had two weeks, so we had double that, and still found it challenging to get going. I can appreciate just how busy you've been. And I also appreciate you sharing your program. You’ve shared on the Aphasia Access Brag and Steal page some wonderful ideas, like your cooking class.   Liz Hoover   That was one with quite a lot of adaptation to do that in your own home.    Interviewer   But very fun though.  This episode, Liz, is going to focus on gaps in aphasia care. But first, can we start by just briefly giving some background on what the White Paper is and why Aphasia Access decided to take on this this weighty project?   Liz Hoover   The White Paper was authored by our founding Aphasia Access president, Dr. Simmons-Mackie. The need for the White Paper was actually conceived during one of the annual strategic planning meetings. One of the big challenges in grant writing and in-service advocacy is that the data on incidence and prevalence were scattered across the internet and papers, and it was really hard to aggregate the data together. And people cover all the data and statistics slightly differently. So, there's no core consensus on those key statistics. So, the board as a whole decided it would be a worthwhile investment to get this research done and done well. So that, as a community, we could advocate for services, and also hopefully identify areas of need using this one comprehensive source. A call for proposals went out and we were just thrilled that Nina agreed to take on the project.   Interviewer   Absolutely. I think it's a really valuable contribution. And I'm so grateful we get this chance to talk about it today. We’ll focus on gaps in aphasia care, as well, but would you like to just describe the White Paper’s main sections for listeners who may not be familiar with it?   Liz Hoover   It’s actually a 125-page report that's divided into seven major sections. The first section introduces the report and reviews the rationale for the report. The other sections are an executive summary, a section on the frequency of aphasia, demographics of aphasia, it’s impact into the larger community. And then the final two sections are on communication access, and then services and service gaps.   Interviewer   That’s where we're going to focus today, but how can listeners gain access to the White Paper?   Liz Hoover   Alright, so the White paper is available on the Aphasia Access website, which is aphasia access.org The executive summary is actually free to members. So, if you're an Aphasia Access member, you can just download that as part of your membership. If you're not, there is a nominal $20 charge to download it. The full 125-page report comes in two versions, you can get it with or without a graphics package, and there's a slightly different price scale for those two. But a reason to get the full graphics package would be if you wanted to use the visuals in inservices or reports of your own. They're all easily downloadable. So, it's $100 without the graphics and $200 for the full report and graphics.   Interviewer   I can say it's been really valuable to me. I'm going to do an upcoming presentation at a local hospital, and I went right to the White Paper to pull some of that information. It really was so useful to have all the citations and the references and the information all in one central place. Can you elaborate a little more on how it can support the student and the clinician or researcher’s efforts to pursue a project?   Liz Hoover   Absolutely. Prior to the White Paper’s release, it was just really difficult to compile the statistics, or have the justifications for need. Having this all accessible in one place with current data gives us a broader, more accurate set of data than we've ever had available. Pulling these things together is time consuming. Whether you're a researcher or a clinician, or even just a student who's trying to justify a project or write a small grant of some sort, it's so useful to be able to take these data to advocate for services in an efficient and more easy manner. I know I use our copy in the center frequently for teaching. I've pulled something from this paper for most of my aphasia lectures across the semester. But I also use it frequently for foundation funding proposals, even government funding proposals and applications. For clinicians, if you need to do inservices to allied healthcare professionals, or if you are trying to get funding or justify even more resources for your department talking about the potential need that's out there in your community, whatever your need, I think the best statistic and the best content is within this paper somewhere.   Interviewer   I was really struck by how many powerful quotes are right in that paper that resonated with me and are really great ways to get the message out. So that's another value.   Liz Hoover   Thank you, Ellen. There are these tidbits and personal vignettes and stories throughout the paper that help you tell the story in in a meaningful way. So, it's not just data and statistics, it really justifies the need. Nina always, in a really comprehensive and participation-based way, humanizes the data for us, right?   Interviewer   Absolutely. And I think that's what spoke to us as a podcast committee when we decided to hone in on the 10 gap areas in aphasia care identified in the White Paper as our agenda for the podcast in 2021. We're excited about launching this episode in January so we can talk about where we want to head with our shows this year. Why did the gap areas of aphasia care become such an important part The White Paper?   Liz Hoover   I think if you asked Nina, she would actually say that if you just look at the White Paper, it can be a bit depressing, the true state of the care of aphasia. So, the gap areas, and, as she would say, their call to action, they’re supposed to inspire us and get to feel optimistic about where we can make a change, where we can focus our efforts, and how we can make that biggest impact for those living with aphasia. So, there’s that piece, and from an organizational perspective, knowing where those gaps exist allow us to think strategically about where we can focus our resources to have the biggest impact.   Interviewer   Absolutely. We will list those 10 gap areas in our show notes. And they're listed in the executive summary that's free for everybody. We’ll talk about some of them, as we engage in this conversation today. Where do you want to start?   Liz Hoover   The first White Paper gap area is the insufficient awareness and knowledge of aphasia by healthcare providers and the wider public. I'm not sure how many of our audience have had a chance to read the follow up paper to this. But there's a paper published in April of 2020, in Aphasiology called Beyond the Statistics: A Research Agenda for Aphasia Care. This paper highlights that the many of the subsequent gap areas that Nina identified in the paper stem from this lack of awareness. The general public doesn't have sufficient awareness of aphasia, and all of the recent surveys show that people may have heard of the word, they may have a vague understanding, but it's a low bar of knowledge of the word, right?  If the general public and those distributing funds don't really have that good awareness, then we don't have sufficient funding across the continuum of care, which is gap number two. If we don't have sufficient funding, then there's insufficient availability of the intervention, right? So, there's this trickle down between awareness, funding, availability of services, the availability of intensive services, across the care continuum.  (It may impact) things like insufficient training for participation-oriented intervention. Nina cited in the White Paper, a study by Katarina Haley that basically revealed that of the 1000 plus treatment goals in the larger goal bank study, less than 5% focused on participation. We have insufficient amounts of care and we're not focusing the intervention at the right area of participation.  And then Nina also highlighted that, as a community, there's insufficient attention to comorbidities such as depression and low mood, which again prompt all sorts of adverse health care consequences. A lack of a holistic approach to community reintegration because we're not thinking about those comorbidities that might be going on.  And then finally, the 10th gap listed is the failure to address family and caregiver needs. So that LPA tenant of needing to provide adequate care to all of those who are affected by aphasia and the continuum of care.    Interviewer   These are all important to all of us who provide services to people with aphasia. And they are part of why I'm an Aphasia Access member.  How have these gaps guided Aphasia Access efforts and focus as an organization?   Liz Hoover   We come back to these areas of need whenever we're trying to think about our projects and our programming throughout the year. So, the board meets in December to look at and approve the budget for the subsequent year. We are a lean organization; I'm just going to say that up front. But what little funds we may have to guide programming, they are all driven back to which of these gap areas does this project support or address. We have a development committee who's always actively looking for funds to support a project. This framework and these gap areas are used every time a project is being discussed or we're applying for funding.   Interviewer   I want to drill down even a little more. I'm going to ask you to share some specific examples of how Aphasia Access is addressing these gap areas through its initiatives and programming.    Liz Hoover   I will try. I will add a caveat up front and say that I'd like to apologize if I forgotten anything because 2020 was a busy year. We had our June Aphasia Awareness campaign with weekly initiatives. But the biggest one, of course, was the 24 hours Teach-in where we had 24 hours of continuous programming for a day in June, recruiting people from international areas to just share and spread the wealth. That was a particularly powerful event. The history of the Teach-in is that we're trying to protect something. And if you ask Barbara Shadden about this, who was one of the key members of this program committee, that was the point. We were trying to increase awareness of aphasia with that showy, flashy spread of resources and information.   Interviewer   I've never ever been part of something that went 24 hours in aphasia before. So that was phenomenal to me. But you've really amplified its power and impact because Aphasia Access has posted more than 50 of those presentations. I pulled from them for one of my projects, just this last semester, when I wanted to look more carefully at communication partner training.  There were a number of wonderful presentations that I could listen and watch. So just having that “live on” is another wonderful accomplishment for the organization.    Liz Hoover   It just speaks to the willingness of the community to share and to step up. The 24 hours event, absolutely, was the first. There were some of us who thought, gosh, this is madness, absolute madness. But as you said, the library that has come from people graciously sharing their ideas is tremendous. And I think that fueled lots of other virtual webinars, conversations, panels, and programming with the Resource Exchange moving to a monthly Brag and Steal format, where we invite members from practice to just share those great ideas. The Brag and Steal has always been a really powerful part of our Aphasia Access Leadership Summit. We're working on an E-learning project, which is designed to meet the gap in the insufficient training on participation. I can't share too much at the moment, but I've seen the training modules and they're just terrific sets of courses, mini courses, if you will, on how to get certification in these LPA tenets and training participation-based care. We hope very much that that's going to be available in the first half of 2021.   Interviewer   But is that separate from the academic modules that you've already created?    Liz Hoover   Nobody else has seen it yet. It's a sort of a self-learning module where there's tests throughout, but it will allow folks who take this to earn a badge in this participation-based care. So that, again, designed to meet that gap area.  We've got some grants and proposals in the works to try and bring that training to earlier levels of health care, the acute care environment. We've also launched the distinguished speaker series and there's been several already this year where we've featured experts internationally who have shared their knowledge in a webinar format.  We've also had a couple of special events like the LPA anniversary celebrations, including the ASHA breakfast where we had Dr. Audrey Holland and Dr. Roberta Elman speak about their new book. And then we had the founding authors of the LPA projects, that wonderful panel in fall, as well.  So, I think there's been lots of specific virtual programming events that have happened already that are trying to share information and training, practice, and overall awareness, as well. And one of the other things I’d just like to mention is while there have been a lot of experts and luminaries in our field, a lot of this programming, too, has been crowd-sourced from our membership.  It's not just those who publish the papers who've been involved in this collective community effort, which I think is special about this organization.   Interviewer   I agree.  I have found it, personally, to be an incredibly inclusive and welcoming community. And that has been really valuable to me. You highlighted some things that Aphasia Access has done already; you gave us a hint of something coming up. And that's part of my next question.  Are there other upcoming projects or new endeavors that we're going to see in 2021 furthering this work and hopefully motivating people to renew or begin a membership? That's a little shameless plug, but sorry, go ahead. What on the horizon?    Liz Hoover   Our distinguished speaker series will continue. We have Dr. Miranda Rose from La Trobe University. We have the incomparable Dr. Leora Cherney who will be speaking and Katarina Haley, and Barbara Shannon. And then we close out 2021 with a talk by Dr. Linda Worrall, who needs no further introduction.   Interviewer   Fantastic lineup.   Liz Hoover   We're excited about those talks. Nidhi Mahendra, who you know well and is now at Cal State, San Jose, will be leading our task force on diversity and inclusivity. So, we will be hearing more programming from that task force. There will be the continued Brag and Steal sessions that come through the Resource Exchange.  But I think our biggest piece of programming that will happen in 2021 is the every other year Aphasia Access Leadership Summit. This will take place in the first week of April. We will be virtual this year because as we were planning, the risk of it being able to happen in person felt too difficult to predict and the risk of the costs falling outside of expectations was problematic. So, we will be virtual. The theme of this Leadership Summit is “Uniting for Action, Learning From One Another”. There will be a really exciting week worth of events.  The way the programming will work is that there'll be synchronous and asynchronous learning that takes place across the first four days. There will be a talk that happens lunchtime hour central time. So, it's sort of a breakfast hour for those on the west coast. Then the main bulk of the programming will take place on Friday and half day on Saturday. Monday, Tuesday, Wednesday, Thursday, there's a one hour talk that will be available for you synchronously or asynchronously if you can't make that particular hour. Then it continues 9:00 to 5:00 on Friday and 9:00 to 12:30 on Saturday.  A press releases will come out shortly. But basically, there's content on healthcare disparities for people with aphasia, work on telepractice, and innovative programming using technology. There'll be a two-part panel conversation on unpacking aphasia groups. So, I'm really looking forward to that one. There'll be lots of crowdsource talks from the call for papers. But again, in the spirit of all that we do at Aphasia Access, it's about learning from each other and that sense of community. I hope folks will find the content to be really valuable to their daily practice.   Interviewer   Liz, in an earlier podcast that we did with Megan Sutton, she shared that going to her first Aphasia Access Leadership Summit was career changing for her-- it was that impactful. And I feel the same way. I joke sometimes that it's better than a B-12 shot because it just energizes you through the exchanges, the sharing among the wonderful, wonderful, committed people who are there talking about their experiences and their work. It's just a phenomenal experience. So, I recommend it. Even though it will be a virtual platform, it sounds like a lot of thought is going into how to make those connections still be really valuable.   Liz Hoover   While I don't know exactly the specifics, I'm assured there will be time for conversation and mingling in rooms because some of those great ideas come from chatting in line with somebody during these conferences. I'm optimistic that, despite joining from our own environments, we'll still have that same opportunity for sharing and conversation.   Interviewer   A little earlier too, you talked about the need for optimism. I think we’ll get that from the conference, for sure. But going back to these gap areas, is there a particular topic where you feel most hopeful or excited in terms of making progress?   Liz Hoover   I do. I think that I share the optimism of many of our members and certainly some of the speakers that we've heard from this past fall, that what once was a subversive or revolutionary movement is now really just part of the conversation that is focused on participation. This client-centered care is mainstream and shared. But you know, it's always been part of my mainstream, but I think I'm less of an outlier these days than certainly 25 years ago.    Interviewer   Absolutely. Yet, I know, there's still challenges. You've alluded to those as well. Are there gap areas that you feel are more challenging to address or getting less attention than the others that you'd like to highlight?   Liz Hoover   I'm an optimistic person at heart. And I'm encouraged by all the work that has been done and is currently being done by people to move the needle for aphasia awareness, but the reality is that there's still a long way to go. The needle hasn't moved much in 16 years in terms of the public worldwide being aware of and truly having a working knowledge of aphasia. I think that that's a gap area that needs to be a continued international focus area of attention, because that will feed the other gap areas, as we've already talked about. So, I think that needs to be our priority. I know there is a sub-committee, an international group of researchers who are planning an agenda for this area, but we will need to keep that need front and center in our our practice.   Interviewer   That leads me to my next question. What can we pose to our listeners today in terms of how to respond to these gap areas in their own practice? Our listeners are across a large variety of settings, but what's the message we should get out?   Liz Hoover   I've been thinking quite a bit about that over the past few days. And I think it's easy for us to get discouraged, right? Or to not think that we can make much of an impact or to ask, “who am I to make an impact”, but I think we can, individually and collectively. I was struck, as I often am, by something Maura English Silverman said to me very recently. We were on a call about something and she was reflecting on having listened to some of the LPA speakers this past fall. These were special conversations. If you haven't had a chance to listen to them, they're up on the website, I encourage our listeners to do so. Because there were some really candid humanizing stories that were shared by these giants in our fields, right? And they talked about how the ideas in LPAA were born out of these really common clinical frustrations. And I say common, because I know, I've experienced versions of those similar kinds of frustrations.   And so, Maura reminded me that we have those frustrations, and we have those ideas, too. Maybe our ideas or your ideas could be impactful and powerful on that same level, if you would share and collaborate and get engaged to help bring about some solutions. Remembering that Aphasia Access is a community of equal ideas, and we value each and every experience and idea, and if you've got something to share, and you've got some energy and time, then getting involved and helping us move that needle in any of these gap areas would be tremendous.    Interviewer   I was going to ask you to do a pitch for membership, but I think you just did it, but still, who is aphasia access open to?   Liz Hoover   Absolutely, absolutely everybody. If you're interested in helping to change the lives of people living with aphasia, then we are a place for you to come and make an impact. There will be some exciting membership changes for students, especially in the coming year. So, I think with the resources, the community, the mentorship that's available, it's well worth getting involved.   Interviewer   We’re also looking towards expanding our interprofessional interaction. I'm very excited about that as well within the organization. So, a place for everybody. I like that, Liz. I want to thank you for having this conversation today. And I want to acknowledge how inspired I've been by your work within this organization, and course, you as a director of a very dynamic Aphasia Resource Center. I want to thank you for that work, which has been inspiring to me in my career, as well. Is there anything else you want to say to wrap up today, Liz? It's just been such a pleasure.   Liz Hoover   Thank you, Ellen, you're always way too kind. I think if I could, I’d just like to close with one other thought. You know, gosh, this has been a year, right, unlike any other. I learned a new word from the paper the other day, it was called “doom scrolling”, which is what it feels like when you read the paper and it's just doom and gloom as you scroll down the page.  As I was thinking about your questions on impact, I think we as a community, we as people, are kinder than we might remember at the moment, right? And that the good deeds that we do as part of our practice will be paid forward. I have been so inspired by some of my members this semester, on their work, their energy, their attempt to comfort and support each other, and their initiative in figuring out how they can make a difference in their own communities. Like in the shared book club that we have done this semester, there's one woman who's inspired to do an in-service at her local Rhode Island hospital on the need for communication access. She's going to write a blog in case her story can help others. This is somebody who didn't tell people outside of her immediate family that she had aphasia because of the stigma that she felt early on.  Those stories multiply, right? That starts with you doing the best job you can and embracing people in this community and helping to empower. So maybe making an international impact is hard, but that's not the goal that we need to have immediately. It's about remembering that each person on whom we have a positive impact will spread. And kindnesses will travel forward, and we hope that is the impact that is sustainable for us.   Interviewer   That is a beautiful way to close this interview. Liz, I thank you for that perspective. And I am so grateful we've had this conversation today.    References and Resources: Avent, J., Patterson, J., Lu, A., & Small, K. (2009). Reciprocal scaffolding treatment: A person with aphasia as clinical teacher. Aphasiology, 23(1), 110-119.   Avent, J., Glista, S., Wallace, S., Jackson, J., Nishioka, J., & Yip, W. (2005). Family information needs about aphasia. Aphasiology, 19(3-5), 365-375.   Avent, J., & Austermann, S. (2003). Reciprocal scaffolding: A context for communication treatment in aphasia. Aphasiology, 17(4), 397-404.   Avent, J. R. (1997). Manual of Cooperative Group Treatment for Aphasia. Butterworth-Heinemann Medical.   Haley KL & Cunningham K. (2019, March). The aphasia goal pool project: Updates and observations. Poster presented at: Aphasia Access Leadership Summit, Baltimore, MD.   Simmons-Mackie, N., Worrall, L., Shiggins, C., Isaksen, J., McMenamin, R., Rose, T., ... & Wallace, S. J. (2020). Beyond the statistics: a research agenda in aphasia awareness. Aphasiology, 34(4), 458-471.   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.   Simmons-Mackie, N. (2018). The state of aphasia in North America: A white paper. Moorestown, NJ: Aphasia Access.

Show Notes - Episode 61 Something Sweet... LPA One Cupcake at a Time: A Conversation with Rick Lemoncello Welcome to the Aphasia Access Conversations Podcast. I’m Jerry Hoepner, a faculty member in the department of Communication Sciences and Disorders at the University of Wisconsin – Eau Claire. I am privileged to introduce today’s guest, Dr. Rik Lemoncello. We are fortunate to have a conversation about his work on supporting adults with acquired brain injuries in the Sarah Bellum’s Bakery & Workshop.   Rik Lemoncello, PhD, CCC/SLP (he/him/his) is an Associate Professor in the School of Communication Sciences and Disorders at Pacific University, Oregon. His work focuses on developing creative solutions to support adults with acquired brain injuries, interprofessional education, and the scholarship of teaching and learning. He founded and directs a non-profit program, Sarah Bellum’s Bakery & Workshop, in Portland, Oregon. He serves on the ANCDS TBI Writing Committee, and speaks regularly at local and national conferences.  Take aways: Start small, think big This organization’s mantra is ‘serendipity,’ as it is a project that “just wants to happen.” Serendipity led to much of the initial upbringing of the project and continues to inspire its producers and participants to grow the organization further. Sarah Bellum’s Bakery uses the OT framework of Doing, Being, Belonging, and Becoming. By doing a task (baking in this case) and getting better, the bakers have this sense of being, and that turns into this sense of belonging, and then the sense of becoming and reformulating their identity. The participants are not called individuals with brain injuries or clients or certainly not patients! They are referred to as bakers and salespeople as a way to assist them in creating an identity for themselves other than their brain injury. In order to see results, consistently modeling desired behaviors for the participants and the students is an essential part of leading this type of apprenticeship program. Interprofessional collaborations with Occupational Therapy and Vocational Rehabilitation are crucial to leading individuals with brain injuries into supportive, paid employment opportunities   Interview transcript:   Jerry: Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner, a faculty member in the Department of Communication Sciences and Disorders at the University of Wisconsin - Eau Claire. I'm privileged to introduce today's guest, Dr. Rik Lemoncello. We are so fortunate to have a conversation with him today about his work in supporting adults with acquired brain injuries in the Sarah Bellum's Bakery and Workshop. Dr. Lemoncello is an associate professor in the School of Communication Sciences and Disorders at Pacific University in Oregon. His work focuses on developing creative solutions to support adults with Acquired Brain Injuries, interprofessional education, and the Scholarship of Teaching and Learning. He founded and directs a nonprofit program, Sarah Bellum's Bakery and Workshop in Portland, Oregon. And he serves on the ANCDS TBI writing committee and speaks regularly at local and national conferences.   Jerry: Well, good to see you today, Rik, how are you doing?   Rik: I'm doing okay, hanging on, you know, COVID-19. It's a day by day week by week process. But...   Jerry: Absolutely. This has been an interesting several months. So, we've all learned a lot.   Rik: Yes. Thanks for having me here. Jerry. I'm glad we could finally make this connection.   Jerry: Likewise, I'm really excited to have this conversation. So, I'm really excited to have a conversation about Sarah Bellum's and the work that you guys do. Before we dive into that really cool conversation. Just as kind of a tradition in my talks, my podcast, I should say. Can you talk a little bit about your mentors and influences?   Rik: Absolutely. I think generally, McKay Sohlberg, who's at the University of Oregon is one of my primary influences. And before I knew her, I was a clinician working at rehab hospitals in the Boston, Massachusetts area. After completing my Master's in Boston at Emerson College, and I hadn't had a lot of background in cognitive rehabilitation. So, after working on the TBI unit in the hospital, one summer, as we do in Boston, we either tend to go up to Maine or down to Cape Cod for the summer, and I tended to be a person who went up to Maine. So, one summer I grabbed McKay Sohlberg and Katie Mateer's textbook on cognitive rehabilitation, brought it with me to the beach, and read it pretty much cover to cover in a week with so many aha moments. And then after reading that and being awoken to the wonderful world of cognitive rehab, I had the chance to see McKay do a live conference in Boston about the next year and I decided then in there that she was someone I wanted to continue to pursue my PhD with. And the rest of that was history. I moved out to University of Oregon to pursue my doctorate. The other person that I met along the way is Lynn Fox, who's now retired. She worked at Portland State University for many years after her work at the Portland VA. And Lynn Fox really is my inspiration for this work at Sarah Bellum's bakery. In my first year at Portland State University, Lynn Fox was running the then called Aphasia Stroke Camp Northwest and invited me to come to camp one weekend and I said, Lynn, I would love to do that, but I don't camp, and I really don't want to sleep overnight in a tent or a cabin. So how about I just come for a day, and she agreed. And it was very eye opening, and wonderful to see speech language pathology and occupational therapy and psychology students all working together in this interprofessional context before interprofessional was even the term we were using. And the focus was not on their impairments or their aphasia. The focus was on camping and having fun. And I said, Lynn, this is an amazing program that you've built. Your population your focus is adults with aphasia and camping is something that you do well, what can I do? I love the acquired brain injury, cognitive rehab population, and I love baking. So, there in 2008, was born and hatched this little idea to one day create a bakery program that would support adults with brain injury. So, to answer your question, I would say McKay Sohlberg and Lynn Fox were two, are two of the people who have really influenced me.   Jerry: Well, those are two pretty terrific people to influence and to grow and learn from. I want to say I think it's pretty funny that you brought along a textbook on cognitive rehabilitation to read on the beach. I admire that kind of thinking very much. That's terrific.   Rik: That is the geek that I am.   Jerry: I'm right there with you. So, I went on a cruise with my wife and in my, in my backpack there was a similar book one time and she's like, really? That's what you're bringing along on a cruise. That's, that's really great. Yeah. So, nerds rule.   Rik: Exactly. Two years ago, I read a brain injury survivors personal account story while I was on a cruise, so there you go.   Jerry: Nice. Perfect. That's terrific. Yeah, and I got to say Lynn Fox's work obviously inspired the camp that we run in Wisconsin as well. So, I'm very inspired by her work and what just what a brilliant individual she is. So, what a terrific lead in to you talking a little bit about Sarah Bellum's. You talked broadly from an inspiration standpoint about what led to the idea of Sarah Bellum's. Can you talk a little bit more specifically about that and how that all kind of started to formulate?   Rik: Absolutely. So literally, it's been on the back burner, plenty of food references along the way, since 2008, as I said, when I met Lynn Fox and went up to camp, and that's where this idea really hatched that one day, I was going to marry my two passions of brain injury rehab and baking. So coincidentally, I've always been a baker and I really started baking cakes when I was in graduate school. So I've been an SLP for about as long as I've been cake baking. So, these two really do go hand in hand for me. And so that idea hatched in 2008. It's been percolating for many years, and I've been trying to find potential funding sources. It's not a traditional research project or research grant wasn't really the avenue I was going to pursue. I've been sort of poking around looking at different foundation grants along the way when I've had the time. And then this wonderful opportunity presented itself to me. And one of the themes for me and for Sarah Bellum's Bakery and Workshop is serendipity. And as our bakers and participants like to say, this project just wants to happen. So, serendipity has led a lot of the initial work and continues to inspire us. The serendipitous thing was in 2016, I was named the Tommy Thompson, distinguished professor of education in the College of Education at Pacific University. And this wonderful honor came with a stipend, an endowment to essentially develop any scholarly program that I would like with the approval of the dean to advance my scholarship and continue to promote to the College of Education. So, I had some funding, I had the opportunity to pursue any scholarly project. So, I graciously accepted this award, of course. And I had some ensuing meetings with the dean, and I pitched several different ideas around Scholarship of Teaching and Learning, around assistive technologies, and around this idea of developing a bakery program. And the one that I really wanted to pursue, of course, was the bakery program. And so, lo and behold, the dean bit, there's our other food analogy. And said, that sounds like a fantastic idea. So, there was the hatching of this idea, and the rest has sort of been history. What do you want to know next?   Jerry: Wow, that's terrific. It truly sounds like it was destined to happen for sure. As long as we're talking about kind of how this got started from kind of a startup standpoint, from a philosophy, your idea what we wanted to accomplish standpoint, maybe we'll move into that, talk about some of the specifics of the program. Like, you know, what your theory and kind of grounding principles were, those sorts of things, and then we'll kind of work into, you know, some more details.   Rik: Absolutely. So cognitive rehabilitation, and systematic instruction, and supported environments, life participation approaches, all of these are sort of my foundation with a heavy foundation and systematic instruction, and participation approaches for something that's functional, relevant and meaningful. We can come back and talk about how I came to these aha moments later if you'd like. So systematic instruction, brain injury cognitive rehabilitation, and cake baking. How could we actually marry these two? How could I actually develop a program that takes something very specific, very precise for baking and developing cupcakes without being an occupational therapist ,without being a physical therapist, without being a psychologist, without being a social worker, you know, and from my background as a speech language pathologist in cognitive rehab, and develop a supportive environment, maximizing external supports? Going through the task analysis of what does it actually entail, to go through baking from start to finish, from setup all the way through packaging and cleanup? How are we going to think about pacing for supporting our folks with brain injury? How am I going to think about the language that goes into formulating the recipe? How am I going to go about teaching concepts and specific skills that aren't necessarily going to be a part of the recipe? How am I going to help folks learn to navigate in a small professional bakery space, visual spatially, as well as the social communication aspects that go into building a team and collaborating in a functional communication workplace setting? So again, this foundation and systematic instruction, really thinking about task analysis, how do we break down? How do we analyze all of these components’ skills? How can we then maximize routine and external supports to provide the cognitive orthotics, the cognitive supports, the cognitive crutches to help our clients succeed? And how can we ensure success and use that success that behavioral momentum Mark Ylvisaker's work, to continue to develop and motivate clients to want to continue to move forward? So, to answer your question, I think the influences and theoretical approaches their systematic instruction, life participation models to, again not focus on the impairment. But think about what is the actual activity that we want folks to succeed at? How can we build in the routines, the external supports to make that happen? How can we make it motivating, interesting and fun and collaborative. And I started small. So, anyone wanting to do something like this, I'd be happy to talk about that process too. And starting small, we did just a pilot project the first summer for six weeks. We baked one day a week, we went to a local farmers market one day a week, for six weeks, just with four folks with brain injury and four graduate students working with them one on one and learned so much from that initial pilot program. That gave us then a year to pause, and reevaluate, and reconvene and develop better strategies, better tools for when we started again the next summer with round two.   Jerry: Wow, that's terrific. I mean, that's a really complex, but really well thought out framework to underpin all of the work that you do, I mix, really excited to kind of hear about that aha moment. I appreciate that you weaved Mark Ylvisaker's work in there in terms of the authenticity and contextualized work that you do. And just to highlight that point for our listeners of starting small, and you know, evaluating and continuing to learn from those experiences so that you can continue to grow as you have. Well, we hit me with it. We hit me with the aha moment. I got to hear it.   Rik: Thank you, Jerry. And unfortunately, I've already forgotten what I said. So, give me a quick reminder, and then we can rerecord that little segment.   Jerry: Oh, that's, yeah, absolutely. You said…   Rik: I had several aha’s,   Jerry: I'll hit you with the aha moment about when I learned about this kind of philosophy of a systematic instruction, and yeah.   Rik: And, life participation, let's go with life participation. Yeah, ask me that again.   Jerry: So, as I said, hit me with it. Like what is that aha moment that brought all of these ideas’ life participation, systematic instruction, meaningful interventions together?   Rik: Yeah. In addition to my work with Lynn Fox, my first year on faculty at Portland State University, a big shift in my own professional development. All of my clinical career has been in acute care and inpatient rehabilitation. So really, those early weeks after a significant brain injury. I dabbled a little bit in skilled nursing and an outpatient care, but really, my focus had been on acute care and inpatient rehab. Throughout my doctoral program as well, and when I came to Portland and started working at Portland State University in 2008, I really got involved with the support group community. And getting to meet and interact with people who are 10, 15, 20, 40 years post brain injury, gave me a whole different perspective that I never had that I never could appreciate when I was working in the acute care hospital and inpatient rehab, when patients had not yet been home to experience their injury, when everything was still brand new, and though we're still in a major period of course, adjustment to living with a brain injury. So, getting involved with the support group community and this population of folks with chronic challenges, and yet still finding joy and meaning and purpose in their lives, while also talking about the actual functional day to day struggles, and lack of resources. So, for me, in addition to what I knew, theoretically, it was really getting involved with working with people with chronic challenges that gave me the opportunity to pause and reflect and say, "Hey, wait a minute." Now that I understand better your perspective, your lived experience, how can I better support you as a speech language pathologist and clinician throughout this entire continuum?   Jerry: Wow, that's a terrific story. I gotta say, I've had some parallels to your progression in my career. I started out working in acute care and acute rehab, from the get-go as well. And like you said, working with support groups is what really changed my way of thinking about things too. I can remember reading Mark Ylvisaker's words about the patient as the expert and thinking I got it until I got it. That was a little deeper, a little broader than I had first given it credit for. So absolutely, that's where the rubber meets the road and those long-term chronic needs. And, and you phrase that so well. I'm excited to dig into this a little bit more. Can we talk a little bit about kind of the logistics of running the Sarah Bellum's bakery, everything, from staffing to supplies, and volunteers, and physical location, all of those things you kind of alluded to earlier?   Rik: It ain't easy. Start small. I've learned so much along the way. Because of course, first and foremost, I am a speech language pathologist, and I am a professor. And that is my primary identity. And that's what I know and love. And where I perform the best. It's where I have the most self efficacy for myself. I am not a professional chef, I have never worked in a professional kitchen. I am also not a businessperson. I've never started a business before. This is a nonprofit company. I've been involved with many nonprofits along the way, in various roles. So, setting up and leading a nonprofit program, we started as a small program before we broke off and became our own independent nonprofit organization in 2018. That work and the legalities around nonprofit work I had had experience with and that was not a steep learning curve. But actually, figuring out how to work and navigate in a professional commercial kitchen, how to get a bakery license, how to follow all of the proper food handling procedures and food safety hygiene and how do I supervise and make sure that all of the graduate students and helpers and bakers with brain injury are constantly following all of the proper hygiene and food safety. It requires a lot of vigilance on my part, to be consciously, continuously aware of everything that's happening. So, there are many logistics I've learned along the way, most of it through experience, which means trial and error. Most of it with trial and success, luckily, and that's my systematic construction background coming through again. I try to task analyze and think of all the things that could possibly go wrong before we walk into a setting so that I can be present to support my other crew. So again, starting small as we ramped up, I learned so much. We worked in three different commercial professional kitchens along the way, just rental spaces called commissary kitchens. And these are set up for pretty much startups to come in when people don't have the need for a full kitchen space yet, and you can rent space, and use all of this shared equipment and follow all of the processes. One of the things I knew going into that was that that would be distracting for our population. And by the way, most of the folks that I'm working with are presenting with mild to moderate cognitive communication symptoms, even though 95% of them have had severe acquired brain injuries. So even with mild to moderate symptoms and thinking about return to work as a purposeful, meaningful life activity, I knew that working with a broad population would have successes and challenges that come with it one of those being distraction. So, learning to live with all of the varieties of music that are played at various volumes in professional kitchens, navigating through space with other professional chefs that don't necessarily have background from a therapeutic standpoint supporting folks with brain injury. So, I did a lot of upfront training with our helpers. As we started off, these were graduate students in the SLP program at Pacific University. This was one of their practicum experiences. So being sure that I took the time to train the students up front so that they knew what they were going to do and how they were going to support the baker's all the way through to being continuously vigilant again, and constantly monitoring everybody. That was one of the logistics I had to learn along the way. And it is exhausting. At the end of the day, in addition to all of the physical labor, I am a professor. I spend most of my time sitting in my wonderful office chair, or sitting in meetings. That's the life of a professor. So just being physically active again, in a kitchen constantly picking up and moving heavy items, our mixers that weigh 40 pounds, bags of flour that weigh 50 pounds, and being on my feet moving around doing dishes, I love doing dishes. So that's one of the things that I like to do in the kitchen to keep things moving along. Where was I going with this tangent? Logistically things that I've been learning. Yes, it's a physically challenging job to work in the kitchen as well. So, I had to learn all about nonprofit management, I had to learn how to set up food handlers’ cards and acquire our bakery license and make sure that I am ensuring that we're following food safety precautions. I had to figure out how to set us up at farmers markets. Farmers markets are wonderful community resources, but they're also really logistically challenging to set up and take down every week. And to have all of the appropriate equipment to be able to efficiently move in and move out of a space because you're not the only vendor, they've got 50 to hundreds, depending on the size of the market, 50 to 100 different vendors trying to come in and set up all at the same time and 40 minutes before the market opens. So, there were many logistical challenges there. In addition to all of the logistical challenges of figuring out the actual baking process, how to make a logical flow to a day and work in breaks, and also figure out what the easier tasks were and what the challenging tasks were and how to modify those. So, one example is we do all of the prep work ahead of time before our folks with brain injury come into the kitchen. So those are some of the less safe things like chopping, any knife skills we are doing ahead of time, for safety and liability. Also, some of the more challenging fine motor, visual spatial tasks, like putting the cupcake papers into the pan. Those sticky little cupcake papers are really hard to separate. And when we got started, it would take our crew about 30 to 40 minutes just to put the papers into the pans. So that was not an efficient use of our time. And then they were wiped out and drained. So just figuring out along the way, where and how to best prioritize different tasks. Does that answer some of those questions about logistical?   Jerry: Yeah, absolutely. I was thinking it's kind of ironic that you're helping people with executive dysfunction and need the best executive functions ever just to pull all those details off. Wow.   Rik: Absolutely. Yeah, I like to say and remind the students who are there learning about all of this that I am the executive functions and the person in charge is the executive functions of that kitchen and you have to prioritize, you have to manage, you have to delegate, you have to make decisions. You have to have the big picture and the details. Be vigilant, yeah.   Jerry: Now that is so well said when you said, “I am the executive functions, and those students are the executive functions.” Makes me think about Mark Ylvisaker's framework on apprenticeship and self-regulation and how you must model that self-regulation all day long to not only to people with TBI, but your students. That might be the perfect segue into talking about students’ roles and kind of your role and training them all of those things.   Rik: Yeah, I wear many different hats in my involvement at Sarah Bellum's Bakery and Workshop and one of those hats is as the program director, and that is my volunteer work handling logistics and making sure the bakery is up and running. One of the other hats that I wear through my professor hat is graduate student education and training. So, this has become a clinical practicum site at Sarah Bellum's Bakery and Workshop for students to come gain experience, for many of them their first time working with an adult with an acquired brain injury, and getting to see this wonderful range of symptoms, everything from sensory processing challenges, auditory processing, challenges, hearing loss, through the motor difficulties, balance, ataxia, spasticity, hemiparesis, as well as dysarthrias. And all of the cognitive communication challenges that come along with that, and we can really see I've enjoyed working with students in this context, we approach it very differently from a traditional setting, where in a traditional setting, you might start with formal assessment, and then move into treatment and get to some more functional things. So, we do it exactly backwards. We start with very functional activities, and students come in on their first day and just observe, how is their assigned client, their baker doing with the task of baking, and how are they doing at breaktime with social interactions, and they just observe for the first one to two sessions, and take it in and try to put some vocabulary and match up the knowledge they have with their actual skills that they're observing. And then they work and develop a treatment plan to support that person and make some goals about how they can help to scaffold and then fade the supports, over the course of a semester to help a person reach some part of their baking goal, to become more fluent, to become more independent, to master some of the recipe techniques, through repetition and practice and a lot of scaffolded support. And then at the end, we do this for the benefit of students gaining the experience, not because the bakers need to do this every semester, at the end, the students do a formal cognitive assessment. So, they've had all of this experience already. And then they do the standardized testing. And they say, "ah, yeah," what surprised you?, what didn't surprise you?, in terms of what might actually come out on a standardized assessment. And that's been for me a wonderful paradigm shift in thinking about student training and student education to really hone those observational skills right up front and challenge what we can and can't learn from standardized norm referenced tests. So that's one role that I've had with our SLP graduate students. Again, as a practicum site assessment, treatment, goal setting, goal planning all the way through a semester, I've also had the opportunity to have occupational therapy students come work with us and to inter weave interprofessional practice. So, we usually do a weekly meeting with our OT and SLP students together. When we're there on the same day, we're asking for an OT consult or an SLP consult so they can see the different lenses. We're all working on cognitive rehabilitation and cognitive supports, but how does an OT lens differ from that functional cognitive perspective and sensory visual processing? With the SLP lens of cognitive communication? And where do they meet? And why might we want to refer to one or the other throughout that plan of care? That's my professor hat.   Jerry: That's a pretty terrific description there. I just think about what an awesome contextualized experience those students are having. And I love the way that you framed or describe that framework of students doing the observation and working alongside of these individuals, and then doing the assessment, that standardized assessment later. And just that opportunity to see, you know, like you said, what makes sense here? What am I a little bit surprised by what are those limitations and abilities of those standardized tests? What a great way to really truly understand that because we can talk about it, but to see it as something completely different,   Rik: Especially in that functional milder, higher level executive dysfunction context because they will ace the standardized norm referenced tests.   Jerry: Well said, absolutely. But in a real-life context with all of the demands of the environment and the emotions and all of the people around them. Things are very different. So absolutely. What a great way to see firsthand. Terrific. You said something that made me want to go off on a tangent. I don't know if that's because we're talking about TBI, but you talked about the people that you work with the people in the bakery restaurant business, the shops and things like that. At aphasia camp, we talk about the ripple effect that that has on, you know, the people that come in leading sessions and things like that. Have you seen a ripple effect in terms of those individuals learning about brain injury and learning about the framework of kind of a social participation approach?   Rik: I think I understand that question. I'm going to answer it in two ways, if my working memory will hold on with me. One is identity for the person with brain injury themself. Referring to our crew as bakers, or salespeople, because we have backup house where folks are doing the baking, we also have front of house where the sales are happening in restaurant lingo. Some folks only work in the back, some folks only work in the front, sometimes people do both. So, we referring explicitly from the beginning, we decided not to use client, or participant, or volunteer, certainly not patient in this context. But "baker" organically came out from that initial pilot work. And it's been really fun to observe, we had three out of the four bakers who started with us four years ago are still with us. One dropped out because of other life demands. And to see their identity formation, and recreation, and re-development all tied to this idea of self-efficacy, developing strengths, feeling success, all back to Mark Ylvisaker's work here to  Ylvisaker and Feeney and identity formation and recreation. Our crew, our bakers are actually identifying as bakers, right. And these are people who had never baked before, baking was not their life goal, but participating and having something meaningful to do. And a place to go, a place to feel safe, a place to feel accepted, a place to feel like you didn't need to explain your brain injury, has all become part of that. And we've got a manuscript in process hopefully coming out soon, we've submitted it to the journal work with my colleague, Sarah Foidel, who's an OT faculty, using an OT lens to look at this, how a functional task like baking, like a work task, helps to improve doing, being, belonging, and becoming this OT framework lens. So, by doing and getting better, you have this sense of being, and that turns into this sense of belonging, and then the sense of becoming, and reformulating this identity. So that's been a really fun theme for me to observe and to continue to develop and think about other ways we can help folks with this identity emergence, and really this idea of self-efficacy and feeling good. The second way I was going to talk about that question was the ripple effect on the community. I think that might be what you're referring to as the ripple. So, getting involved with the farmers market had this wonderful way of engaging our bakers and folks with brain injury in a whole new way and reaching the community in a whole new way that I had not experienced before. Right. People go to the farmers market, not because they're going to learn about a medical condition. People go to the farmers market because they want to chat with the vendors and buy their supplies. And so, lo and behold, the first farmers market we went to happens to occur at a hospital, a big, big hospital in Portland called OHSU, and every Tuesday they do a farmer’s market outdoors in the summer. So, I didn't even know it existed. I looked on the list of farmers markets, and I said that's the perfect one for us to try to start off with and the community of people, just coming by hearing the story from our bakers firsthand, "I made these cupcakes", I am proud of this work, and let me tell you a little bit about brain injury while you're here. Every farmers market we went to so that first summer we did one a week. The second summer, we were doing up to five a week, five different markets as we were growing and expanding and taking it to scale. Every market we went to there was not a day that went by when someone did not have a personal connection to brain injury. Right. And we talked about this and that was great for the students to see too. We talk about this, that brain injury acquired brain injury is such a big population. And many people have some kind of connection, a mild concussion, uncle, a family member who's had a stroke, someone they know has had a brain tumor, a colleague, a coworker that was involved in a car crash and had a TBI, high school friends. It is so prevalent and so pervasive and the reception from the community throughout has been nothing but positive. And folks seeing how brain injury is so unique from person to person. One of our Baker's has significant dysarthria. And his intelligibility, I would say is probably 50% to an unfamiliar listener. And yet he is so social. He was our front face of the bakery at one of the local farmers market and he developed groupies who would come back each week just to chat with him and hear what he was up to, to see what cupcake he had made that week. He also has significant ataxia by the way and has made so much amazing progress in the three years he's been working with us. He now makes our cupcakes and frosts and garnishes, does all the decoration on our mini cupcakes that we distribute to a local grocery store. And not everyone gets to do that. And so, imagine someone with severe ataxia, intention tremor. Initially, he would just mix our ingredients, I'm getting off on a little tangent, but he's a really powerful story. Initially, he would just mix the ingredients, and he didn't want to scoop the batter because that was too challenging. So, we worked with him hand over hand, did some modeling and support and he learned to scoop. But he didn't do any frosting. So, he went from just mixing, then we added in scooping, then we added in making the frosting then we added in and this was over the course of the first year. Then we added in frosting and learning we do one technique, we do a swirl technique on almost all of our cupcakes and learning to master that with an intention tremor ataxia, hand over hand, the benefit of motor learning, boy did that pay off hand over hand, modeling, fading that over the course of six months, he learned to frost on his own. But he didn't garnish, that was too much of a fine motor task. And eventually, he's now at the point where he's doing our mini cupcakes, which are harder to do and garnishing them in the benefit again, of this systematic, repeated supported learning. Folks can learn.   Jerry: Wow, I am still patting down the goosebumps, Rik, just amazing I, I could have 42 follow ups, but I just want to highlight a couple of things you said. I love the terms, bakers and salespeople. That idea that it's not a person with a brain injury, and it's certainly not a patient, it's just so important. And you highlighted Ylvisaker's principle of renegotiating identity and having a purpose and a value. And certainly, these individuals from what you've described do. Is it okay, if we share some sort of a reference to that forthcoming article in the journal of work?   Rik: Sure. I'll send you the link. It's been submitted. So, we're awaiting a decision.   Jerry: Terrific. And I didn't even know there was a journal of work. But that makes sense. So I wanted to highlight that framework of doing, being, belonging, becoming. What a terrific, insightful framework that really aligns with LPAA. And I think our our listeners will definitely appreciate moving along that continuum and your illustrations, your stories cover that perfectly.   Rik: Yeah, it's apparently a pretty well understood and accepted framework for occupational therapists. It was new to me, but should be pretty part and parcel for most of our OT colleagues.   Jerry: Well, that speaks to your point earlier about interprofessional education and the reason we need to have our eyes and fingers in those OT journals as well to learn those things. Because that that's so insightful in terms of the work that we do, and certainly the work that you do in this context.   Rik: Absolutely.   Jerry: I was gonna ask you to share a little bit about the people and the outcomes, and you kind of started doing that. Can you talk a little bit specifically about speech and language, cognitive communication outcomes in those contexts and any broader ones too? We'd love them all.   Rik: Absolutely. So, we're doing ongoing program evaluation as part of this nonprofit bakery program. Along the way, I've been sort of adjusting and figuring out with the boards, how we are operating and what we are expecting out of our different crew. So initially, the goal was really for folks to come through our training program and graduate and move on into another paid employment. So, our bakery program is really looked at as a pre vocational model. Most of our crew are volunteers and coming in to get this training and opportunity. Along the way, as I've been interacting with more and more folks, we've had about 50 different bakers, salespeople, folks with brain injury come through the program, with varying ranges of cognitive communication challenges. So, along the way with our 50+ folks, we've had three graduates. And when I say graduates, those are three folks who have gone on to other successful competitive paid employment. And if you look at the vocational rehab literature, paid employment is really this gold standard idea of meaningful outcome when it comes to return to work. And full time being that ideal goal. So, we've had three folks successfully graduate from our program. One of them, Leslie, has a testimonial on the website, www.sarahbellumsbakery.org. You can watch her little 10-minute video story, she actually worked as an audiologist for many years before her series of strokes. And then with a series of six strokes over a short period of time, was unable to return to work, had significant interfering cognitive challenges with attention and with word finding and a mild aphasia. And it wasn't until she came and experienced success and got this idea that she could actually do it, she could return to work, she actually quickly moved up the ranks from being a salesperson to a baker, to a person in charge and helping to manage the front of house because of her ability to benefit from the structure and continue to grow. So, she's got a great testimonial on the website. Two of our other graduates, again, moved on, got that confidence, I think that's a big one, the confidence, the experience, the awareness, the ability to integrate that with how to use and adapt their strategies. I can go off on a tangent here too, you got to have a purposeful, meaningful opportunity to use these strategies. And when we're working in our traditional therapy settings, we can drill and talk about how wonderful it would be to use these in everyday real life, but again, I've seen folks with significant memory challenges start to use their external tools much more successfully and consistently now, with an actual opportunity with natural consequences. There are consequences when you don't show up to work. And that affects the entire team. So that was a little tangent about functionality. Where was I going?   Jerry: Um, let's see. I think just thinking about outcomes in general,   Rik: Ah yes, outcomes. We can delete that little segment. Yeah, our other ways that I've been starting to reconceptualize outcomes is not only thinking about competitive employment, paid employment, but also how we can continue to be a place that will support long term volunteer, prevocational, social opportunity, life participation for folks with cognitive challenges. Along the way, I've been reading and learning and collaborating with vocational rehab counselors as well, and the vocational rehab model of supported employment. The philosophy is that anyone can work, and anyone can have a supportive employment, paid employment opportunity. The challenges of getting that to happen for folks with brain injury are real and significant though, which is one of the reasons why I created Sarah Bellum's bakery just because there are not many opportunities for adults living with cognitive communication challenges after brain injury as you know. Where was I going with this tangent? So vocational rehab, this idea that anyone can work in a paid employment. It takes a lot of support. And it takes a lot of work to create a supported setting where folks feel empowered and want to come back to work and want to be able to participate and engage and having this therapeutic mindset and understanding about acquired brain injury and the number of repetitions the amount of systematic instruction, how to provide maximal cueing and support initially, how to do that while supporting the person's self-efficacy and confidence and self-esteem. And how to do that in a way that builds skills. I have found really requires some clinician clinical knowledge of cognitive rehab, and it's really hard to train a paraprofessional, a non-cognitive rehabilitation person to provide that level of support, to really help the person be successful. And of course, with brain injury, especially when we get into more significant challenges, generalization is always going to be a challenge. So, you change and get a new boss, you change, and you have a new work setting, they change the system, they change the process, that's going to be challenging when someone has executive dysfunction, memory challenges and significant cognitive challenges, so being able to provide that ongoing support is also important. And folks with brain injury don't typically get ongoing support through vocational rehab.   Jerry: Yeah, wow. Those are some pretty terrific outcomes. And I want to emphasize this fact, you said, you know, gainful employment, preferably full time is the ultimate kind of gold standard. But this is an opportunity for people to do something meaningful, and something that does rebuild identity, and purpose. And so, what a, what a terrific outcome and just look forward to hearing and reading about more of those over time.   Rik: Our vision for Sarah Bellum's Bakery and Workshop with that hat on as the program director there, the vision of the nonprofit organization is to see people with brain injury in paid gainful employment for every person with brain injury who wants to work. And that's our pie in the sky vision, of course. And one of the ways that I will continue to work on that with my also professor hat on is I'm very interested in continuing to collaborate with vocational rehab and help to get the word out about cognitive supports and cognitive systems that can help support adults with acquired brain injury.   Jerry: Well, you certainly have a lot of experience to draw on for that, so that's terrific. So, with all of these experiences, certainly it's changed you as a person and the way that you look at things. I'm wondering about how that influences the way that you teach, the way that you think about cognitive rehabilitation, both of those things with this new lens.   Rik: It's a blessing and a challenge. Let's say, the more you know, the harder it is to teach. As much as I love cognitive rehabilitation, and I have a class dedicated to acquired brain injury, I'm very fortunate at Pacific University as a relatively newer programmer in our eighth year. In our graduate SLP program, I came in at the beginning and helped to design the curriculum and said, I want a class in acquired brain injury and my colleague, Dr. Amanda Stead, said I want a class in progressive, neurological injuries and dementia is her specialty. So, it's pretty unheard of, to have a separate class on aphasia, a separate class on progressive neurological impairments and a class and acquired brain injury. So, I feel very fortunate that I get a whole graduate class in acquired brain injury and cognitive rehab. That said, it's the hardest class that I teach, because it is my area of expertise, right? So, Scholarship of Teaching and Learning and thinking about how are we actually going to distill down I want them to know everything that I know and have all of my experiences. But how do I actually prioritize? What are the essential things that they really need to know, what's interesting to know, and what's not relevant? So, I think a lot about that my teaching has changed for many reasons. Over the last 12 years I've been in academia and trying to constantly distill it down is one of those thoughts but how has Sarah Bellum's changed my teaching, in addition to getting involved with the support groups and having this really functional life participation, purposeful activity, lens, return to work is something that is much more on my radar now. And when I talk about acquired brain injury, a really honing in on who are the peak incidences of this population to? Adolescence, working adults, and the elderly. Falls, falls, crash, motor vehicle crashes, sporting events, especially for TBIs. So, adolescence, just working on getting through high school transition programs with more severe challenges and entering a workforce. How are we going to help support them through entering the workforce? That's a very purposeful, meaningful life participation goal. Someone in their 20s, 30s, 40s, 50s, 60s, right at their peak in their prime of their working years. Yes. 60s, 70s? Yes, we don't judge. People are working throughout the lifespan. And that's a major part of our identity, and Peter Meulenbroek's work has helped inform this. And he's on our ANCDS TBI writing group as well and chairing that committee currently. What is the purpose? And how do we identify work? as working adults, it's one of our primary identities. I am a speech language pathologist. That's the first way that I identify myself. And if I was not able to return to that, that would be a major reframing required for my identity. So, thinking about return to work, how can we continue to think about return to work as one functional, purposeful, meaningful activity to help our clients get back to regardless of where we are along the continuum of care. If you're working in acute care, inpatient rehab, outpatient, community care, skilled nursing along the way, one of the challenges might be identifying functional goals. So, in addition to the ADLs, IADLs, things that they might need to be able to do to take care of themselves at home. How can we also help to support them in a process to return to work and accessing other community resources like vocational rehab, like a program like Sarah Bellum's Bakery and Workshop, which, again, is why I founded and created this program, because nothing else like it existed. So maybe a little tangent also, may be part of my big picture goal is to inspire others, to want to pick up similar programs and there's no magic in baking, it doesn't have to be cupcakes. It's about finding something that you're passionate about, and helping to create processes that will support folks to have the opportunity.   Jerry: Well, that's a terrific transition to my final big question. And I think you also talked about this idea of starting small before. So, what advice would you give someone who has a big idea like you just to bring it to fruition, as you did?   Rik: First of all, amazing, fantastic. Find another person, at least one who has a similar passion that can help you to initially develop. So, I was fortunate, I was part of another nonprofit organization called Brain Injury Connections Northwest, which ran several support groups. And through that I was the secretary of their board at the time. Through that work, I had the connections, I had some infrastructure to help think about creating this bakery program. That was critical, find collaborators. My occupational therapy colleague, Dr. Sarah Foidel, has also been instrumental, not only in bringing that OT lens, but in helping to think about and shape processes that support our folks. Third, would be funding. There's a lot of startup funds required for any similar startup program. We required startup just to buy some of the initial equipment, we needed mixers, because the mixers that they had at the rental kitchens we were working at, were really small and broken down. And so, we invested in some larger mixers. We had to have money to buy our ingredients, to buy the tent that we needed to go to the farmer’s market. So that kind of infrastructure. As a nonprofit, we could also engage in fundraising, so when we actually got in our brick-and-mortar shop in southwest Portland, we held a big fundraiser to help raise funds for that. So, I don't know if I'm answering your question, big picture, I would say one, find some helpers, people who are also passionate about your idea, two, find some funding, and three, take it slow and give yourself grace. You will have a lot to learn along the way. We are speech language pathologists I'm assuming that's most of your listenership here. But I am so open and so enjoying learning something new. As I often try to tell my students too in cognitive rehab or in language aphasia therapy and motor speech disorders, it's all similar. When you get to work with adults, you're not going to be the expert in their life. They're going to be the experts in their life, and they come from all different backgrounds, and experiences. So, we have the lens to think about communication and cognition and speech and language to help them frame that. But my clients have taught me so much I worked with a guy who invented the flat screen TV and worked with a wood shopping person, you know, high school gym coaches, preschool teachers, the whole gamut. And you don't have to be an expert in any of that, right? Because they bring that expertise and knowledge, but we're helping to find that lens through which to view cognitive communication to help give them tools and supports. So, you also, if you are in venturing on a new endeavor like this, don't need to be the expert in all of those areas, but find the people to help you with all of the logistics and give yourself grace to take it slow. We started very small. And in our fourth year, now we're operating a full-time program. And of course, COVID-19 is a whole different story. Everything changed in March of this year, we don't have time for that story.   Jerry: Well, what terrific advice and you have offered so many insights, not into just running a cupcake shop, but into life participation and applications and extensions of that to individuals with acquired cognitive disorders. So, we are just so pleased to have this opportunity. Anything that we missed, anything that you want to get back to that we didn't get a chance to talk about, Rik?   Rik: I'm sure there are things, I'll just highlight and say that it's not about the cupcakes, right, and the public education that's come out of this too and public walking into the shop, walking by the shop and just the name, Sarah Bellum's, that was one of the initial investments that we had also to hire a marketing person. That was the best $3,000 we spent for someone to come up with the name Sarah Bellum's Bakery. Of course, it's a play on words, and when we talk about it, it's fun to see customers say, "who is Sarah? Is she hear?" I say "no, Sarah is not a person." One of our bakers, I'll end with this story. One of our bakers said it best he loves to play on words, with mild executive dysfunction, really one of our star bakers. At one of the first farmers markets, someone asked, "who is Sarah?" and his response was, "you know, she doesn't like to be in the limelight. She stays in the back, but she keeps us all coordinated."  How's that for a description of Sarah Bellum?   Jerry: Wow, that is terrific. That might get an A on one of my exams, one of my neuro exams.   Rik: Yes.   Jerry: Well, thank you so much, Rik, this has just been a really fun conversation. I know our listeners are going to love it. So, 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 or access to our growing library of materials, go to www.apashiaaccess.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. Thank you, Rik. That was terrific.     Resources: www.sarahbellumsbakery.org Baking Their Way to Job Skills: A nonprofit bakery pairs speech-language pathology students with survivors of acquired brain injury to pilot a functional return-to-work program. Joanna Close, MS, CCC-SLP, https://doi.org/10.1044/leader.AE.23022018.40 Foidel, S., Lemoncello, R., McNicholas, J., Livaudais, C., Rogers, K., & Forero, L. (In Review). Doing, being, becoming, and belonging: A mixed methods review of an occupation-based prevocational program. Manuscript submitted September 2020 to Work. 

Ellen Bernstein-Ellis, Director of the Aphasia Treatment Program at Cal State East Bay speaks with Dr. Joanne Lasker. We'll have the pleasure of discussing how AAC and LPAA models can work together to support meaningful intervention and participation for individuals with aphasia.   Guest Bio: Joanne Lasker is an Associate Professor in the Department of Communication Sciences and Disorders at Emerson College in Boston, MA. Most recently, she has served as the Graduate Program Director for the new Speech@Emerson Online Master’s Program. She has published numerous papers and chapters related to assessment and treatment of adults with acquired communication disorders who may benefit from augmentative and alternative communication techniques, in particular people living with aphasia and apraxia of speech. In collaboration with Dr. Kathryn L. Garrett, Joanne created an assessment tool entitled the Multimodal Communication Screening Task for People with Aphasia (MCST-A), designed for people with aphasia who may benefit from AAC strategies.   Listener Take-aways: In today’s episode you will:   Learn how a recreational sailing program for individuals with aphasia positively impacted impairment, participation, and personal domain changes.   Gain some "insider" advice on how to administer two assessment tools used for aphasia AAC evaluations   Find out how Life Participation and AAC approaches both embrace a relationship-centered philosophy.   Edited Interview transcript follows Ellen (interviewer): Welcome Joanne, I am so glad we get to have this conversation today.   Guest: Joanne Lasker Thank you for having me, Ellen.   Absolutely. We can just jump into this first question. Do you have a favorite clinical experience that points to the value of incorporating the life participation approach to aphasia LPA into your clinical work?   Lasker: I would love to speak about a client that I worked with fairly early in my career. He was the type of person who loved to tackle difficult things. And he was, of course, before his stroke right handed. When he had his stroke, he chose to keep his “ good” working left arm looped behind his back in his belt, and he forced himself to use his impaired limb for all of his daily activities. He essentially implemented a form of constraint induced limb therapy on himself. He was pretty amazing. He ultimately regained full use of his right hemi-paretic arm. When I first met him, he had been doing melodic intonation therapy for his aphasia/apraxia for about six years. We evaluated him and arranged for him to obtain a speech generating device through his insurance.   When he received this system, he immediately took to it. Very quickly after he acquired it, he came in and showed me how he used the pre formulated messages on this tool for his own speech practice. Now, I didn't suggest this, but he chose to do this himself, similar to how he chose to work on his own limb use. We engaged him in treatment around both improving his use of the speech generating device and also improving his speech productions through a series of treatments. We were using a combined restorative and compensatory treatment approach. And he did ultimately regained some spoken language. But he continued, notably, to use his speech generating device across all activities in his life. And his case, illuminated for me how important it is to combine restorative and compensatory approaches to help all of our clients really meet their life goals and fully participate in their own lives.   I think that really very much aligns with LPAA values. And that is the focus of today's conversation. But first, I have one more fun question I want to ask you. I've been following your AAC work for many years and it's truly informed my practice. I want to thank you for that. But at ASHA 2019, we got to share this great conversation about your poster. And your poster wasn't on AAC, it was actually a sailing project with individuals with aphasia. I was quite surprised when I stopped and read it and looked at who I was talking with. Tell us a little bit about that endeavor, even though we don't get to go sailing, right now.   Lasker: Yes, of course. I first want to acknowledge my colleagues at Emerson College, Laura, Glufling-Tham and Lynn Conners who are both involved in the Robbins Center at Emerson College, because without them, the sailing project wouldn't have happened. Laura had a daughter who was very involved with sailing. And at Emerson, the Robbins Center where we see our clients, is a very short walk to the Charles River. There's an active community boating organization there. They offer specifically accessible sailing programs. We decided to offer this as a 10 week activity to adults in our acquired disorders groups from the Robbins center. It was a wonderful experience because we were able to integrate their communication goals with an engaging, exciting activity on the water. The people with aphasia who participated in this were all accompanied by a student clinician. We actually did go out on the water. We began each session with a short school experience where the students and the clients were on the shore with instructors from the sailing school learning all of this terminology on how to operate a sailing vessel. They learned terms like tiller and jib, and we learned terms like tiller and jib. Those concepts were then utilized in the boat, along with visual supports for some of our clients with aphasia. Then we did pre and post test measures on the individuals who participated. We found that many of our participants, and they ranged in severity of impairment and also physical capability, made changes in their auditory comprehension, which is interesting, as well as their self-ratings of their own communicative confidence. And some of the changes that we noticed were also in quality of life as assessed through The Assessment of Living with Aphasia tool. It was a really productive and fun kind of activity that we did with them.   At the ASHA poster we tried to brainstorm on the ever intriguing challenge of what measures best capture outcomes in this type of participation project. I just wondered if you've had any new thoughts about that?   I wish I had a great answer for you. But I continue to believe that we have to triangulate our outcomes. So when we reviewed the outcomes pre and post, we found that we saw changes in different people through both the standardized formal assessments, particularly as I said, auditory comprehension, but also the more self-efficacy related measures, and then also the interview with the client and interestingly, their spouses.   One of the most compelling stories involved one of the clients who had a very significant global aphasia. He was, prior to his stroke, a big outdoors person. He was the Scoutmaster for his sons. Before his stroke, he did sail. While he was really struggling to produce spoken language, on the boat, using the tiller, he was supreme--he was the best one at that activity. His wife spoke to us about the fact that when he was on the water, she actually used this terminology, she said his aphasia disappeared. He became, “like his old self”. She used that phrase exactly. He himself communicated to an unfamiliar partner later, using a combination of gesture and drawing to talk about his favorite experience from sailing, which was doing a slalom race in the water. He drew a figure eight on the table. He indicated very clearly how good that experience was. And it was such a beautiful example of using a participation based approach and a combination of strategies and tools to support the communication of our clients. It made such a huge difference in this this person's life   It makes me think of what Dr. Aura Kagan says so often about the importance of unmasking competence. And it seems like that's a beautiful example of that, offering meaningful activities to individuals with aphasia.   I want to credit you with the title of our episode, Cementing the Friendship Between Augmentative and Alternative Communication and Life Participation. It's something you said when we first spoke about this conversation. In fact, in the 2013 SIG 12 article about communication partner training, you say that the Life Participation Approach is consistent with the principles of AAC. So, it seems to me that AAC and LPAA share the same end game Do you agree?   Lasker: I completely agree they have the same end game and the same underpinnings. So meaningful participation is really at the core of AAC. And we want to credit Dave Beukelman and Pat Mirenda for this idea that there's a participation model that underlies all of AAC work. We know that AAC works most effectively when we target that participation in ways that are specific and personalized to every individual. So I, for example always ask anyone I work with whether they are coming to see me for specifically AAC purposes or aphasia related language purposes. What do you want to be doing that you are not currently doing in your life? And with that question, it leads me to a set of meaningful treatment goals and strategies. So I've never seen a division between AAC and the Life Participation Approach. To me, they are the same.   I've often wondered why there was ever a division. One of the thoughts I've had, as we've considered this topic is whether the presence of technology is somehow concerning to folks who are embracing the life participation approach and somehow they feel that AAC is this other approach in our speech treatment arsenal, that doesn't get included. I think that we have maybe somehow turned people off by including AAC technologies as part of our tools strategy kit. But I think, of course, that's crucial.   Another thought I have is that maybe we use the term partner dependent, and that some people might have felt offended by that. One of the things we've tried to do is to stress that this is a continuum of skill. And when we say dependent, we're talking about relying on strategies to support communication, not that the person themself is in any way dependent on another person. So I wonder if there have been potentially some misunderstandings between these two branches of our field and I appreciate the opportunity to clarify what I think is similar, and in fact, I think they're highly similar. We really have tried to emphasize this continuum of skill set for people who have aphasia. We never intended to imply that a partner dependent communicator was a bad thing. We were simply talking about their ability to access the strategies and tools that AAC has to offer. To my mind, LPAA and AAC, are very similar. In fact, I have a hard time finding differences between them.   We were talking earlier, what are the AAC and LPA models? Are we close friends? Are we cousins? Are we siblings? And I think that's what you're what you're really addressing right now.   Lasker: I think I am saying that they are actually super imposed upon each other. If it makes you feel more comfortable to think of the Life Participation Approach as the umbrella and AAC as a set of strategies within that umbrella, that's fine. I don't have a problem with that. I just want us to be clear that we're not operating from opposite or opposing ends of the field. I would say we're very close siblings, if not twins, in terms of how we interact with each other as a field. It's always made me a little sad, that when someone was working with aphasia, they didn't think,  “Oh, let me try some AAC approaches.” And people from the AAC perspective, many of us have always had a foot in both camps, right? We've always been in the aphasia world and in the AAC world. Kathy Garrett and Aimee Dietz, Sarah Wallace, Julia King, Fischer, all of us have been in both of those worlds. I think it's really important that there's a close tie between these two sets of ideas. I don't see why there should be any conflict.   Linda Worrall and colleagues in a 2010 article argue that relationship-centered care should be at the heart of aphasia rehabilitation and the life participation approach is a receptive model for that relationship centered theory. Now, in your 2013 SIG 12 article about teaching partners to support communication, you spoke to the SLPs role as a privileged and trusted one. So is it a relationship-based approach? Is that another point of commonality for AAC and LPAA?   Lasker: Yes, I think so. Because, certainly, we in the AAC world often think about social purposes of communication. We get a lot of those ideas from Janice Lights work from the 80s, 1988 in particular, where she highlighted what are the reasons we communicate in the first place? What are the reasons we actually engage with other people? To communicate basic wants and needs, to transfer information, and then to engage in social etiquette, but most importantly, to engage in social closeness. So the idea of being able to initiate, establish, and maintain relationships and conversations with other people has been at the core of what we do in AAC. We want to target that isolation that people with aphasia and other people with severe communication disorders experience. Typically, in the cases of people with aphasia, they have means to indicate their basic wants and needs, and they can get that stuff taken care of. What they can't do is engage as they used to in their lives. We try to address the importance of those relationships when we program systems, create messages, and give them strategies and tools that incorporate life activity and partners to improve these outcomes.   You have a award winning 2008 article with Katherine Garrett in the ASHA Leader. It's called Aphasia and AAC: Enhancing Communication Across the Healthcare Settings. Joanne, it's been downloaded 6700 times, which I think is pretty impressive. That article points out that AAC for people with aphasia goes beyond talking boxes and picture boards. Rather, it's a comprehensive collection of communication strategies that provide external support for people who cannot understand or generate a message on their own. That same ASHA Leader article provides a framework for understanding the conversational status of the individual with aphasia as either an independent or partner dependent communicator. And you have a detailed set of subcategories as well. You mentioned this earlier, that maybe that taxonomy has been a problem, but can you describe how that that approach directs treatment planning?   Lasker: So we always want to maximize outcomes for all of our clients, all the people we work with. In the framework that you mentioned, we talk about people across the continuum of living with aphasia, both in acute care in rehab hospitals and outpatient in their lives. After all of that is done, we talk about how they may progress from improving speech and language skills, but also their strategic use of the tools that we can offer them to meet their life goals. When we talk about accessing AAC tools, we talk about moving from a more partner supported end of the continuum where they need those tools. And more importantly, they need support from partners to access those tools. So we're going in with the assumption if we work with people who have aphasia, and we are incorporating an AAC mindset, that we can use whatever tools we want. It's all multimodal, we always want to incorporate a whole variety of tools, but we want to help our clients improve in their ability to strategically access those strategies, right? There’s kind of a redundancy to it, but you get what I'm saying?   Absolutely.   We want them to be able to literally make use of all of the various methods for communication and participation. Some people need more support to do that. And then they move through a phase that we would call transitional, where they maybe need some intermittent support or queuing, a partner to say, “Hey, can you show me that in your book?”, or a partner to say, “Let me write that out for you so that it's clearer.” And then ultimately, on the other end of this continuum. We have a person with aphasia who does what we all love to see, right? You meet this individual, he pulls out his wallet to show you his address on his license. He gestures that he caught a fish last week, and he uses his residual speech and all of the other tools. Well, that's what we all love to see. But sometimes we have to help people with aphasia develop that skill set. And I think that's what an AAC lens to the work with people with aphasia can do.   Maybe we can discuss some other terminology and tools in this conversation. I've noted that sometimes we use the same terms like written choices or keyword writing. And those are both strategies for lengthening and deepening conversation. And they emerged out of the AAC research, is that right?   Lasker: That is so true. So Kathy Garrett and David Buekelman wrote about augmented input conversation strategy and written choice conversation strategy. These are parts of the same overall approach. Augmented input is where we're going to be as partners in the conversation, offering written keywords, gestural cues, or visual supports to help someone with aphasia tune into the conversation who may need additional input to truly understand and decode the language that they're hearing. And then the written choice conversation strategy, which is, instead of helping to improve receptive understanding in a client with aphasia, it's actually helping someone with aphasia use a response pool provided by the partner to engage in an expressive way to participate.  They can offer their ideas and information by responding to the choices offered by the partner, or by indicating along a rating scale, how they feel about a particular idea. So those are examples of the written choice conversation strategy. We couple that with augmented input, and we have two very powerful techniques that we can teach partners to help support people with aphasia in conversation.   I wonder if that's one little point of difference? I don't always use the term augmented input. You know, I talk about multi-modality approaches. But are they the same? Are we just using different words?   Lasker: Multimodal, to me, includes incorporates augmented input, but also allows for the use of gesture and picture supports by the person with aphasia. I think it's all a huge collection of tools and strategies. And I agree, maybe that is also a point of difference in that the partner has a role in conversation that may appear initially, for some partners, even to be burdensome, not something that they bargained for. Right? I didn't expect to have to offer the support to someone with aphasia to participate. But in fact, it yields such a successful result that part of what we do is showing that to families in our sessions with people with aphasia. I do this very early in my sessions, showing partners, “Look, I offered these sets of choices to your wife, and she could tell me where she wanted to go to dinner. And she could tell me that she really is not a big fan of your brother” or whatever it is. So yes, incorporating that into the work that we do is really important.   You just really touched base on my next line of thought. There's a growing evidence base around the training and implementing skilled communication partners. Both the Life Participation Approach to Aphasia and AAC embrace that vital role. I’m giving a quick shout out for the Aphasia Access Teach-in, because Aphasia Access has posted all of the presentations, including a fantastic talk by Dr. Christine Marie Hale looking at current practices, teaching models, target groups, and system impact of communication partner training. I just want to let our listeners know that this resource is on the Aphasia Access website.   You've done some wonderful research looking at the impact of communication partner attitude on the outcome of AAC. You address Finger’s framework for key personnel in your 2001 article with Jan Bedrosian. Can you describe that for us?   Sure. What we did there was focused not only on the communication partners attitude, but also the person with aphasia’s  attitude. We actually did some work with a client who had aphasia, who benefited greatly from a voice output device with some preprogrammed phrases on it. However, as is typical with many people who have aphasia, he was initially reluctant to use the system in public because he felt it was stigmatizing. Although, of course, it was a useful tool for him. He acknowledged it was useful, but he actually communicated to us, “Don't feel right. Don't feel right” because it didn't feel right to him to use it in public. It was certainly a change from his habitual method of communication prior to his stroke which didn't require the use of a small computer that spoke. However, he acknowledged this was a good tool.   So we worked with him to desensitize him to using the system in public, as something that might work within his life. We began, of course, by staying within the clinic. We brought in unfamiliar partners to do role plays with him multiple times. Then we started to go out into the community as a team, with us as a support person. We went to various locations and helped him, as sort of a “standby assist”, to use the system to engage with people in the community. What we found was that he received a variety of responses. But one in particular was particularly positive. This was from someone in a post office. He went up to the counter and he asked for stamps or something. And she said, “What is that? That is so cool. I wish my my mother had had that tool.” She was so positive and so warm and so friendly. That went such a long way in helping this client to feel like, “Hey, this is okay. I was able to use it to communicate what I needed to say, and I didn't get a negative response.” And so after that process of desensitization, he did continue to use this tool   It reminds me of the person I mentioned at the outset of our talk, the one who put his hand behind his back to train his other arm. He basically insisted that, even though his speech improved considerably, he needed this machine to help him in all the various aspects of his life. He lived independently. He had to take care of his home. He traveled. When we asked him do you need this system still to talk with, he said, “Oh, yes, I need it, I need it.” And in fact, he traveled on airplanes with it. He went to the State Fair. He went out with it. He used it in the bar and ordered his drinks with it. He did everything. He appreciated being an ambassador for this system. Everyone has a different response, of course, to technology and the way it interacts with them and their life. But in his case, it was clear, it was not as much of a stigma for him, as it had been for this other gentleman, and we needed to go through a process of helping him alter his attitude towards the system that he was carrying with him every day.   I'm going to jump to this question then. Because as you reflect on your research exploring user and partner attitudes towards using AAC strategies, would you like to discuss the AAC acceptance models as they tie in here?   Lasker: Sure. We talk about a process by which we need to find the right mix of the person who fits well with the technology we're choosing in the contexts or the milieu that we're working in. So this is sometimes called the Matching Persons and Technology (MPT) model. It comes from work by Marcia Scherer, initially. We adapted it to help clinicians problem solve is this is going to be an appropriate tool for the individual? Do we have the person's skills commensurate with what's required of the system? Do we understand the needs that they have in their environment? Is their desire for participation being met by this tool? And so using this combination of looking at the person, the features that they need that are consistent with the technology and what it offers or the strategies and what they offer, as well as the demands of their own environment? Are they all consistent and aligned? If they are, we're likely to see a more successful outcome. What happens is when we have a person who has a tool that is not usable for them, whatever that tool may be, because it's too difficult or cumbersome or stigmatizing. They don't like the voice. There are lots and lots of reasons why a person might reject a strategy or a tool. So this model helps us begin to analyze that.   I'm going to shift to another tool. We talk about motivational interviewing as one tool for helping to collaboratively set meaningful and relevant goals. And you recommend a careful interview using the Aphasia Needs Assessment. Again, the link for this is in the show notes. The Aphasia Needs Assessment is a comprehensive set of questions looking at: Who are the partners? What are the preferred topics and contexts? What is the method of communication and functions and degree of success? It can feel like a lot to navigate with an individual with aphasia. Can you share some tips on how to use this tool to make it more aphasia-friendly? What's been your experience?   Lasker: We actually don't expect that most individuals with aphasia can do this tool independently. Instead, we offer this tool to the informant, often a family member or a spouse. And at the same time, we also want to take some of the items on this tool and deliver them with augmentation to the person with aphasia. We create a set of questions that have rating scales associated with them. So how important is it for you to talk about your service in the military or how important is it for you to talk about family finances on a scale of one to five? This is a lot like some of the work we talked about in AAC known as Talking Mats.   But we also take a lot from a tool called the Social Networks Inventory. Looking at the circles of communication partners for an individual with aphasia, one of the things we want to do is be sure that not only are our goals helping with a person's activity in life, but that they're engaging with the people they want to engage with. We did an analysis of the social network of a person with aphasia to determine who they would like to be communicating with. The way we had to do this was through written choice and augmented input to get this information from the client with aphasia who was very limited in terms of his ability to speak at that point. What we discovered was that this young stroke survivor wanted desperately to speak with his 10 year old son who was living at a distance and wanted to communicate with him. From this analysis, we came up with the goal of helping our client learn to use email more effectively, because that was something that he was stymied by. And if this had been done, a couple of months ago, or a year ago, it would have been about texting, right? Or  FaceTime. But the idea here is that we want to support the completion of those tools through some of the partner supported communication strategies as needed. So we get the information directly from the client with aphasia as we can, and use informants to fill in the rest.   You mentioned another tool, social networks, which I think is a commonality between the Life Participation Approach and AAC. We both use that as a touchstone concept.   Another substantial AAC tool is the measure you and Katherine Garrett developed, the Multimodal Communication Screening Task for Persons with Aphasia. And you've generously made this open source. The link is in the speaker notes to both the test and to your 2006 article. It provides a very different type of information than a standard aphasia battery. Can you describe the tool and how you use it?   Lasker: Thanks for that question. It's so surprising to Kathy and me how widely use this tool has become. We developed it out of our own clinical need. We needed a way to look at the strategy usage by people with aphasia, how we would typify that, and their potential to benefit from AAC strategies. It’s been translated into about 12 different languages. And that's amazing to us. We're happy to have that happen.   I know that it's a challenging tool to use, because we haven't created a standardized resource. But, we're certainly working on that. I hope to create some sort of video-based resource for it. But this tool is essentially a sample communication notebook that is given to a person with aphasia. They have an opportunity to look it through, and then the clinician or whoever's administering the MCST-A will say, “How would you tell me that you want to buy some new shoes?”  “How would you tell me that you need to refill a prescription?” How would you, etc. So that's the idea.   As those questions are posed, the person with aphasia is encouraged to use any modality to communicate a response. It can be the communication book that they've just been given. It could be their speech or it could be a gesture. And the interesting part of it is that each test item can be delivered three times, so that it's not just once and done. It's a dynamic assessment tool. We're looking to see how much cueing, how much support, does an individual need to communicate this idea adequately to another person. As a result, by making it a dynamic assessment tool, allowing at least three different attempts to respond to this item, and then also cuing in-between items, we’ve made it very flexible, but also challenging to do as a clinician tool.   We've really appreciated it in our Cal State East Bay clinic when we've used it. But I'm going to be frank that we found the multi-dimensional scoring both incredibly rich and informative, but a little bit daunting to do live, especially with student clinicians. Do you have any advice? Or is it just a matter of practice--we'll get better at it if we just keep doing it? Are there any video training resources? You just were hinting that you might be working towards that?   Lasker: We are  definitely working toward that. But, I do want to say that we don't do a good job of scoring it live either. A recording will really help you to score it. I want to also stress the most important scores. From this test, because you don't have to administer all of it, you can do portions of it to show how many attempts the client need to communicate this idea. So we're looking at overall number of attempts and overall number of cues per item because what we found, and this makes total sense when you when you think about it, someone who needs a lot of attempts and a lot of cues, falls more toward the partner supported end of the continuum. Someone who is actually able to communicate an idea, a concept with one attempt, or with only minimal cueing from us as the administrator of the test, that person moves towards that more independent end of the continuum. They're able to access strategies without a partner's support cuing them to do so. So those are the two, I think, most important pieces--how many attempts per item and what are the number of cues you provide? And you're free to provide as many cues as you want, because we want to see how much it takes for the client to be successful at communicating this idea.   That makes sense. That is how you start to hone in on your treatment planning, perhaps?   Yes, exactly. So in fact, that has helped us decide on where does this particular person with aphasia need support in learning how to access the strategies that we're going to offer them. It might be that they need help navigating from page to page or location to location, or maybe they need help determining which is the best method for them to use to communicate an idea.   So maybe we have a client who has lots of skill sets, but they need to learn that they should try speaking first, then looking in their communication book, and then maybe looking somewhere else, or using a gesture or writing down a first letter. We sometimes need to teach that sort of sequence of behavior to help. I think there's a misunderstanding, sometimes, that people should be just able to use AAC strategies without any teaching or learning. That is another misconception. I always tell the students I work with, you know, we don't come out of the womb knowing how to do AAC “right”. It's not something we're born being able to do. We need to be taught. The MCST-A does highlight some of the things that we might need to be teaching our people with aphasia, so that they can access the strategies that could be helpful to them.   Joanne, we could do another show discussing how the AAC tools like visual scenes or communication remnants can increase participation of an individual with aphasia in meaningful conversation, because these are two more AAC approaches that are focused on individualization. I wish we had more time. But what else do you want to have opportunity to share about this “friendship” as we wrap up?   Lasker: I understand. I agree. I think I would like to acknowledge that with careful planning, with an extended time for clinical support, AAC interventions can really enrich the communication and participation options for people with aphasia, and their partners, virtually at all stages of their adjustment to living with aphasia. I think we want to be aware of all of the methods available, and not see AAC as a divide, as an other--that there's the AAC world, and then there's the aphasia world. I think that we should focus on ongoing assessment and intervention for people with aphasia over the long term, by reframing all of our work in terms of meaningful participation. And that includes incorporating AAC strategies. I think that can drive what we do in the future.   That is a wonderful closer to help us understand not to see AAC as an “other”, but really as a way we work together and bring so much more richness and meaning to the services we provide. Thank you again for sharing your expertise with us today and with our Aphasia Access listeners and members.   On behalf of Aphasia Access, we thank you for listening to this episode of Aphasia Conversations podcast. For more information on Aphasia Access or to access our growing library of materials go to www.aphasia access.org. If you have an idea for a future podcast topic, email us at info@ aphasia access.org     Resources: Citations and Links Garrett, K. L., Lasker, J. P. & King Fischer, J. (2020). AAC supports for adults with severe aphasia and/or apraxia of speech (pp. 553-603). In D. Beukelman & J.Light (Eds.), Augmentative and alternative communication for augmentative and alternative communication: Supporting children and adults with complex communication needs. Baltimore, MD: Paul H. Brookes. Lasker, J., & Bedrosian, J. (2001). Promoting acceptance of augmentative and alternative communication by adults with acquired communication disorders. Augmentative and alternative communication, 17(3), 141-153. Lasker, J. P., LaPointe, L. & Kodras, J. (2005). Helping a professor resume teaching through multimodal approaches. Aphasiology, 19(305), 399-410. Lasker, J. P. & Garrett, K. L. (2006) Using the Multimodal Communication Screening Test for Persons with Aphasia (MCST-A) to guide the selection of alternative communication strategies for people with aphasia. Aphasiology, 20(2/3/4), 217-232. Lasker, J. P., Garrett, K., & Fox, L. (2007). Severe aphasia. In D.R. Beukelman, K.L. Garrett, & K.M. Yorkston, (Eds.), Augmentative communication strategies for adults with acute or chronic medical conditions (pp. 207-242). Baltimore, MD: Paul H. Brookes. Lasker, J. P. and Garret, K. L. (2008). Aphasia and AAC: Enhancing communication across health care settings.  https://doi.org/10.1044/leader.FTR1.13082008.10 Multimodal Communication Screening Tool for Aphasia http://word.emerson.edu/jlasker/past-research/   Aphasia Needs Assessment http://word.emerson.edu/jlasker/past-research/   AAC-Aphasia Categories of Communicators Checklist http://word.emerson.edu/jlasker/past-research/

Ellen Bernstein-Ellis, Director of the Aphasia Treatment Program at Cal State East Bay speaks with Megan Sutton about how to empower individuals with aphasia to engage with home practice goals and how incorporating apps may enhance practice opportunities. Megan Sutton is a speech-language pathologist and the co-founder of Tactus Therapy Solutions, an app development company that creates popular aphasia therapy apps. She has designed 20 apps for adult speech pathology, including the best-selling Language Therapy 4-in-1. Megan has over 15 years of experience working with people with aphasia in a variety of clinical settings including acute care, inpatient and outpatient rehab, and an intensive aphasia treatment program. She is the co-author of the stroke recovery book entitled Healing the Broken Brain and is an international speaker on the topic of using technology in aphasia therapy. Megan lives near Vancouver, Canada where she regularly helps with the Sea to Sky Aphasia Camp and is on the clinical faculty of the University of British Columbia. She is a member of Aphasia Access and a volunteer with the Aphasia Recovery Connection.   In today’s episode you will: Learn why you should consider attending the next Aphasia Access Leadership Summit Hear a common misconception about LPAA and learn how addressing impairment is considered one of the four basic domains of the A-FROM Learn how personalization with apps is key to making home practice more person-centered. Consider the critical elements that contribute to creating a meaningful home program for a client. Hear a moving message from families regarding their experience at home coping with aphasia. Download the Full Show Notes

Katie Strong, Assistant Professor in the Department of Communication Sciences and Disorders at Central Michigan University, talks with Jodi Morgan about aphasia programming at Brooks Rehabilitation Aphasia Center. Jodi Morgan, CCC-SLP is a speech-language pathologist, manager and co-founder of the Brooks Rehabilitation Aphasia Center. She serves as Clinical Assistant Professor in the Department of Communication Sciences at Jacksonville University. She also teaches courses in adult language disorders and cognitive disorders and rehabilitation. Her research interests and publications are in the area of aphasia and cognitive-linguistic rehabilitation in adults. Jodi has received multiple ASHA ACE awards and is an active member of Special Interest Groups through ASHA. She is a member of the Jacksonville Area Speech Pathology Association and the Florida Speech and Hearing Association. Jodi recently received Brooks Rehabilitation Research Award.  She is currently a board member of Aphasia Access and serves as co-chair of the Academic Curriculum Working Group and the Aphasia Access Research & Education Committee. She presents at the community, state, and national levels in the areas of aphasia, supported communication, life participation approach to aphasia, and improving functional communication in adults with aphasia. In this episode you will: hear how crowdsourcing gave Brooks Rehabilitation Aphasia Center it’s start learn the benefits of partnering with high schools for intergenerational influence on aphasia programming learn how people with aphasia influenced and started an Ambassador Program hear Jodi’s experience as an Aphasia Access Board Member and how you can become involved in volunteering   Download the Full Show Notes

Ellen Bernstein-Ellis, director of the Aphasia Treatment Program (ATP) at California State University, East Bay, speaks with Melinda Corwin about ways to engage aphasia group members in planning a special event. Melinda Corwin is a professor and clinical supervisor at the Texas Tech University Health Sciences Center Department of Speech, Language, and Hearing Sciences. She directs the Stroke And Aphasia Recovery Program (STAR) and is a member of Aphasia Access and its Board of Directors. In this episode you will: Learn about five different areas for involving group members as partners in event planning Hear about three kinds of awards that may enrich your event program Consider the dual benefits of member-guided celebrations: Building ownership in a fun event for people with aphasia and their guests and promoting aphasia awareness to the broader community Download the Full Show Notes Special Thanks to these Aphasia Access Members and organizations for underwriting this episode: - Ruth Fink - Nina Simmons-Mackie - Karen Tucker  

Ellen Bernstein-Ellis (California State University, East Bay) speaks with Melinda Corwin about aphasia choirs. Melinda Corwin is a professor and clinical supervisor at the Texas Tech University Health Sciences Center Department of Speech, Language, and Hearing Sciences. Her research and clinical interests include adult neurogenic communication disorders. She directs the Stroke And Aphasia Recovery Program (STAR) and is an affiliate of Aphasia Access. In today’s episode you will: Compare and contrast two models for aphasia choirs--one embedded within a summer arts program and one embedded within an academic year day program. Learn about the value in providing IwA the opportunity to transition from music listeners to active music makers. Gain insight into the challenges and some potential options for capturing outcomes for choir participation Discover some tips for selecting music and the challenges of integrating new members into an ongoing choir Download the Full Show Notes

In an episode focused on “Insights and ‘Aha Moments’ about Aphasia Care”. Dr. Katie Strong (Central Michigan University) speaks with Aphasia Access President Ruth Fink about her career and the vision and initiatives of Aphasia Access.  Ruth Fink, MA, CCC-SLP is a co-founder and retired Clinical Director of MossRehab Aphasia Center, and Scientist Emeritus of Moss Rehabilitation Research Institute. A founding member of Aphasia Access, she currently serves as Board President. After 20 years as a clinical SLP, she joined the Moss Rehabilitation Research Institute as a Research Associate where she served as Co-PI and Project Director on treatment research in the areas of sentence processing, word retrieval, and computer-assisted applications in aphasia rehabilitation. In today’s episode you will: Hear Ruth share about how her career followed the course that a client might follow and about how magic happens in aphasia groups Learn three tips for how to transition from a clinician to a clinician researcher Hear about Aphasia Access’ vision to advance lifelong communication access for people with aphasia Learn how you can become a volunteer with Aphasia Access Download the Full Show Notes

Janet Patterson (V.A. Northern California Health Care System) speaks with Denise McCall, the Program Director of SCALE at The League for People with Disabilities in Baltimore, Maryland, about their unique organizational structure. Denise McCall co-founded SCALE back in 2008 and, in 2014, it merged with The League and has turned into a specialty program there as part of their medical day program. Denise has over 30 years of experience as a clinician and a researcher. She has served persons with aphasia across the continuum of care and has contributed to international research and grant programs to improve aphasia care. Denise is a certified speech language pathologist and is one of the founders of Aphasia Access - currently serving as an active member on its Development Committee. She received a B.S. in Communication Disorders and in Psychology from Towson University and earned a master's degree from George Washington University. In today's episode, you will: Learn about SCALE’s history and the unique manner in which it combines an LPAA model and a medical model for serving people with aphasia; Understand how SCALE was transformed through their search for new funding opportunities; Hear about SCALE “Accounts Meetings” and “SCALE Tenets”. Download the Full Show Notes

Dr. Katie Strong of Central Michigan University presents an episode on The State of Aphasia in North America. She interviews Dr. Nina Simmons-Mackie about Aphasia Access' recent report on the State of Aphasia.  Nina Simmons-Mackie Ph.D., BC-ANCDS is Professor and Scholar in Residence at Southeastern Louisiana University in Hammond, LA. She is past president of Aphasia Access and serves on the current Aphasia Access board. She has received the Honors of the American Speech-Language-Hearing Association, the Academy of Neurologic Communication Disorders & Sciences and the Louisiana Speech-Language-Hearing Association. She received an Outstanding Clinical Achievement Award from the American Speech, Language and Hearing Foundation. Dr. Simmons-Mackie has many years of clinical, academic and research experience in neurogenic communication disorders and has published numerous articles and chapters in the area of adult aphasia. Interests include aphasia, qualitative research, and social model philosophies. In today’s episode, you will hear: The story that inspired the State of Aphasia in North America Report; A guided tour of the organization of the report; A few of Nina’s highlights from the report including the Impact of Social Isolation and Services for Aphasia. Download the Full Show Notes

In this sixth episode of the CSD Podcast, Ms. Becca Jarzynski and I talk about her work as a community SLP, a clinical faculty member at UW-Eau Claire, and running her own private practice. Becca also talks about the role of clinical supervisors and what she's learned as residential graduate student clinical placement coordinator. Throughout the podcast we make reference to some links and resources. Becca’s blog can be found at: www.talkingkids.org; You can email her at JARZYNRL@uwec.edu Her Facebook site is: https://www.facebook.com/ChildTalkSpeechTherapy/ In the podcast, I talked briefly about a new journal called the Teaching And Learning in Communication Sciences and Disorders. You can find it at this link: http://ir.library.illinoisstate.edu/tlcsd/vol1/iss1/ Additionally I mentioned Aphasia Access – you can find them on the web at www.aphasiaaccess.org Be sure to check out our social media presence on Facebook (https://www.facebook.com/UWEC.CSD/) and Instagram (https://www.instagram.com/uweccsd/). And enjoy the wise and thoughtful reflections from Becca throughout this episode...enjoy!

Dr. Katie Strong speaks with Kathryn Shelley, current President of Aphasia Access. Kathryn shares her own journey in aphasia care and some "a-ha!" realizations behind the creation of Aphasia Access. You'll learn: Three W's that start and sustain an aphasia program Four ways that Aphasia Access differs from other aphasia organizations Five Aphasia Access avenues designed to save you time One thing you can do today to improve your network  Download the Full Show Notes