Aphasia Access Conversations

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:

1. Learn some history and exciting information about the 2022 International Aphasia Rehabilitation Conference
2. Find out the value of international collaboration to people with aphasia and to the aphasia research and clinical community
3. 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 [email protected], 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 [email protected]. 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 [email protected] 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 [email protected]. 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 [email protected]. 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:

1. Learn from Robin Pollens examples of teaching and mentorship in the LPAA.
2. Be buoyed by the hope inspired by this next generation of LPAA practitioners.
3. Consider why it is so important to offer learning opportunities like the Leadership Summit, other Aphasia Access resources, and teaching/mentorship in LPAA principles.
4. 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.
5. 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 have goals of our own right, based on how they do on in their diagnostics and all that but it's also really important to see what they want. What they want to improve on first and how we can kind of go into that middle ground and see how it does that they can improve with our goals, and how does that they can improve with their own goals so definitely putting the patient first.

Jerry Hoepner: Yeah, that's a really great takeaway and certainly if you can do just that that's a big step towards doing the right thing for individuals with aphasia and the rest of our patients and clients. Why should other students get involved in Aphasia Access?

Clarisse El Khouri Faieta: I just think that it's a great learning opportunity first, because you get to listen in on different presentation conference presentations by researchers that are very skilled that are very seasoned and then, at the same time, it gives you that the skills necessary to deliver what you've done in your research or how to get involved in research. Also, it's a great networking opportunity, you get to listen in and talk to these researchers and a lot of them are most if not all of them are extremely nice and approachable. So, I think that it's such a great learning opportunity and for anyone who is able to get into Aphasia Access to definitely go for it.

Jerry Hoepner: Oh, that's terrific. That's one of my favorite things about Aphasia Access too. How easy it is to connect with all of those researchers, and everyone is you know treats you like they're on their same level and is open to a conversation so.

Clarisse El Khouri Faieta: Yeah.

Jerry Hoepner: They do yeah absolutely. Yeah terrific. Well, thank you so much for sharing, Clarise. Is there anything else you want to share before we end our conversation?

Clarisse El Khouri Faieta: Well, that Aphasia Access, I think this conference was really good although it was virtual I still learned so much and just all the tools and resources that they had were really, really helpful, especially to me as I, you know as I graduate soon, and I start seeing where it is that I want to specialize in this field. So, I think that aphasia says kind of gave me that push to be more interested in the field of aphasia.

Jerry Hoepner: Terrific way to cap it off. Well, again, really nice talking with you and I look forward to seeing you at future Aphasia Access, maybe.

Clarisse El Khouri Faieta: Yes, for sure, thank you, Dr. Hoepner.

Jerry Hoepner: You're welcome.

Clarisse El Khouri Faieta: Have a great rest of your day.

Jerry Hoepner: Thanks, you too.

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 [email protected]. 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 an article by Worrall and colleagues in 2010, and a recent one in 2020 by Cohen-Schneider, 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 Généreux 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. Fnding 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 [email protected] 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 at aphasia access.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.