Aphasia Access Conversations

Welcome to this Aphasia Access Aphasia Conversations Podcast. My name is Janet Patterson. I am a Research Speech-Language Pathologist at the VA Northern California Healthcare System in Martinez, California, and a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their efforts in engaging with persons with aphasia and their families through a variety of educational materials and resources. I am the host for today’s episode that will feature Dr. Sarah J. Wallace from Queensland, Australia. These Show Notes accompany the conversation with Dr. Wallace but are not a verbatim transcript.

In today’s episode you will hear about:

• clinical meaningfulness and research wastage: defining and addressing,
• minimal important change: defining and measuring,
• four “Monday Morning Practices” to create clinically meaningful outcomes.

Dr. Janet Patterson: Welcome to our listeners. Today I am delighted to be speaking with Dr. Sarah J. Wallace from the University of Queensland. In this episode we will be discussing the topic of operationalizing treatment success: what it means, the research efforts supporting this idea, why it is important to think about as we plan and deliver aphasia treatment, and suggestions for implementation in daily clinical practice.

Dr. Wallace is an NHMRC Emerging Leadership Fellow, NHMRC Senior Research Fellow in the School of Health and Rehabilitation Sciences at the University of Queensland in Australia. She is also a Certified and practicing Speech Pathologist. Her research interests include communication disability in ageing and enabling and measuring meaningful change in language and communication impairment in individuals with post-stroke aphasia. She uses qualitative and mixed methods to explore the lived experience of communication disability and works in partnership with consumers and clinicians to co-produce clinical interventions and methodological approaches that support the production of meaningful outcomes.

Among her interests in aphasia assessment and rehabilitation is a focus on measurement of aphasia and rehabilitation outcomes, in particular, outcomes that are real and are meaningful to persons with aphasia. Sarah led the ROMA group, Research Outcome Measurement in Aphasia, a group that has published three papers reporting efforts to identify standard outcome measures used in aphasia research. In addition, with colleagues across the world, she published a paper examining methods of operationalizing success in aphasia treatment in research and daily clinical practice. Foremost in this body of work is what I perceive to be Sarah’s desire to bring together ideas from persons with aphasia and their family members, assist clinicians and researchers to identify effective and efficient rehabilitation techniques, and to measure treatment outcome in a relevant and scholarly rigorous manner.

Welcome to Aphasia Access Conversations, Sarah, and thank you for joining me today.

Dr. Sarah Wallace: Thanks, Janet, for this invitation.

I would like to start today by acknowledging the traditional owners of the lands from which I'm joining today, the Turrbal and Yuggera people, and pay my respects to their ancestors and their descendants who continue cultural and spiritual connections to country.

Janet: Thank you very much. I appreciate that acknowledgement.

Sarah, throughout your career, you have published papers focusing on aspects of aphasia rehabilitation, many of which explore the topic of measuring and standardizing outcomes in aphasia rehabilitation. How did you become interested in exploring this aspect of aphasia?

Sarah:  Before I completed my PhD, I worked first clinically, as a speech pathologist, and later in a government policy role in the area of aged care quality and safety. I really loved both of these roles for different reasons. As a clinician, I could make a difference at an individual level. But with the government role, I realized the huge impact you can have when you're influencing practice from a systems level. So, when I went on to complete my Ph.D., I really knew that I wanted to do something big picture. At the time, there had been a few big studies coming out with no results. There was a lot of talk about how important it is to get research design right. Then as part of my work at the time, I was reading the World Health Organization, World Report on Disability, and that's where I really started learning about this concept of research wastage and the importance of having a really considered approach to the way we measure outcomes when you want to use data efficiently beyond an individual study. That really appealed to me, particularly given that, within aphasia, we tend to have small sample sizes and really need to make the most of the data that we collect.

Janet: Sarah, we often hear the term clinically meaningful in relation to aphasia outcomes. How would you define that term from the perspective of a person with aphasia? And also, from the perspective of aphasia clinicians and researchers?

Sarah:  This is an excellent question. This is something that I was really interested in during my Ph.D. It's this idea of what is a meaningful outcome. And who actually gets to decide that? And are we measuring what matters to the people who live with aphasia, and the clinicians who work with them? I remember reading at the time, and one of my favorite quotes is from a paper by a researcher called Andrew Long. He says, in practice what actually gets measured depends on who wants the data, and for what purpose. I really think that the idea of clinically meaningful depends on who you're asking, and why you're asking. As an example, in the studies that we conducted with people with aphasia and their family members, they thought improved communication was really important. But they also identified a range of outcomes that related to participation, to attitudes, to psychosocial well-being. But then things change when you look at a different stakeholder group. We also spoke to clinicians and managers around the world, and they identified a range of outcomes. But the really interesting part was that improved language itself wasn't actually considered essential. The top outcome that they came up with actually related to family members, that they understand how to communicate with the person with aphasia. I think what it comes down to is the message that I've really tried to share from my research is that different outcomes matter to different people. And we can measure them in so many different ways. And that this is something that we really have to think carefully about.

Janet: Listening to your responses to these first two questions, I can feel the energy! I can feel this passion looking at aphasia rehabilitation from a larger perspective, outside the actual treatment that gets delivered, and thinking about how we make sure that our treatment is the right thing, and is measuring the right thing, whatever, as you say, the right thing is. It depends on who's looking for the data. You've maintained that focus of how can we become a better entity, better clinicians, if you will, at the broader scope? Does that make sense to you?

Sarah: Yeah, it does, and that idea really resonates with me. I think that's definitely been a feature of the work I've done and the work that I continue to do. It's very focused on collaborative efforts and how we can make the most of what we have, so that we can ultimately improve outcomes for people with aphasia.

Janet: I do think we need to pay attention to this. We cannot just assume that if we give a test pre and post treatment, it is a meaningful outcome to a person with aphasia or to their care partners or to a third-party payer.

Sarah, you have led the ROMA group, that is Research Outcome Measurement in Aphasia. As I mentioned earlier that group published three papers describing standardized assessment measures suggested for use in aphasia rehabilitation outcome studies. Would you briefly describe the genesis of the idea for this work and the studies the group has published?

Sarah: Following on from what I mentioned earlier, this was during my Ph.D. Once I had this idea that I wanted to do something to help reduce research wastage in aphasia, I started reading more about approaches to standardizing outcome measurement and came across the work of the Comet Initiative, which is a group that brings together people who are interested in the development of standardized sets of outcomes, which they refer to as Core Outcome Sets. There's this idea that a Core Outcome Set is essentially the minimum outcomes that should be measured in treatment studies of a particular condition. And that really appealed to me. So, we went from there, we conducted a series of studies looking at different stakeholders, gathering thoughts and perspectives about what an important outcome actually is. We conducted a scoping review of outcome measurement instruments so that we could try and match those outcomes to available tools. And then we've had a number of consensus meetings, where we've tried to pair those two things together.

Janet: I think the work of the ROMA group is important, and being part of that group, it's exciting to watch the minds of people all over the world, contribute their various perspectives, and have discussions about the different measures and the value of the measures. While I think it's wonderful to work at this level, this broad level of perspective, at some point, it has to inform our daily clinical practice. How do you see that happening?

Sarah: Yeah, that's a really good question. Essentially, we conduct treatment research so that we can help clinicians and people with aphasia and their families to make informed decisions about treatments. What's going to help? What's the best treatment for a particular issue and for a particular person? To answer these questions, researchers need to measure the effects that a treatment has on a person, what we refer to as outcomes. When we're measuring different outcomes in different ways it makes it harder to compare data, to combine it across studies, and to draw strong conclusions about which treatments work best.

Core outcomes also need to be relevant, and this is the other part that has been really exciting to me. They should capture results that are important to people who live with that condition. Ultimately, I think that the clinical relevance of the ROMA Core Outcome Set lies in what it is hopefully doing - helping to produce the best evidence that we can get for aphasia treatments, so that those treatments can then be implemented into practice in order to improve the lives of people with aphasia and their families.

Janet: I think that those papers should be required reading for every speech-language pathologist dealing with people with aphasia, and also other rehabilitation professionals, because it helps if we can all be thinking in the same way, as you said, to think about treatment candidacy and does one treatment work better, or for a specific person. or someone with a particular aphasia profile, than another kind of treatment? How do we make good clinical decisions for our patients? That's exactly, I think, what you're saying.

I mentioned also earlier that with several colleagues, you recently published a paper titled Operationalizing Treatment Success in Aphasia Rehabilitation. That paper was published in the journal, Aphasiology. I am a great fan of that paper and would like to begin by asking you why it would be important, in your mind, to operationalize treatment outcomes, given the variability that we see among aphasia patients.

Sarah: Thanks, Janet. And yeah, and this is a great paper. It was led by Caterina Breitenstein and other researchers from the Collaboration of Aphasia Trialists. This paper is really trying to answer the question, “What is a successful outcome from treatment?” What are the ways in which we can actually measure that treatment success? This is such an important question because research will end in clinical practice and so much hinges on this decision? Whether a treatment is successful is going to depend on how we define success and whether we can measure that success in a way that can actually be captured.

Janet: Sarah, in light of your thinking about the different stakeholders, how might operationalizing treatment success differ for the various stakeholder groups that you've identified? That is, people with aphasia, family members, clinical and other medical professionals, medical administrators, and aphasia researchers?

Sarah: This is really that idea that different outcomes are important to different people. If we think about this from a societal perspective, or from a healthcare funders perspective, any treatment that's provided as part of clinical care needs to be cost effective. So that might be something that from a funders point of view is a really important outcome. For clinicians, the ability for someone to take part in conversations and to communicate in different settings and roles is something that, through my research, was identified as an important treatment outcome. Then from the perspective of people with aphasia, not surprisingly, it's improved communication. But it's all these other things as well. It's being able to participate in a conversation. It's having a sense of recovered normality and a feeling of autonomy and independence. So again, I really think it's the idea that it really depends on who you're asking, and the perspective that they're coming from.

Janet: Your comments make me think about work done by Jackie Hinckley and others about stakeholders being part of deciding research questions or research directions. It also makes me think about work done by Michael Biel and others about motivation and engagement. All of these, I think, have a bearing on the research or the clinical enterprise. Are people engaged? Are they willing to commit time and resources to a rehabilitation enterprise because they see value in it, and because they see that there's a likelihood of a good outcome. I believe that what you're doing in terms of thinking about operationalizing helps move us along in that direction.

Sarah: Absolutely. I think that's a really important point, that if someone can't see the relevance of what they're working on in therapy, for example, then they're not going to engage in that process. It really starts with goal setting, and really identifying, working with a person to identify, goals which are really going to be functionally relevant to them and to their day-to-day life. I think if you can get that part right, then everything else follows on from that.

Janet: In your paper, you and your colleagues describe the concept of minimal important change, as a way of determining clinically relevant improvement on an outcome measure, considering the average statistically significant change across groups, as well as statistical significance at the individual level. Can you unpack that concept for us and describe how it relates to daily clinical practice?

Sarah: Yeah, absolutely. This is a really exciting idea, I think. Basically, minimal important change, and it is called different things, but this is the term that we've chosen to use, is the smallest change score above which an outcome is experienced by someone as being relevant or meaningful. I really love this idea, because what we're essentially doing is applying qualitative meaning to quantitative change on an outcome measure. To put this in an example, what this might actually look like, what we're asking is, for example, if I do a Western Aphasia Battery, and then do it again, how many points would actually tell me that that person had experienced a level of meaningful change. So that's what we're trying to work out to determine these benchmarks for meaningful change. We've actually recently received funding for this work, which is really, really exciting. We're going to be undertaking a project, where we use an anchor-based method to establish minimal important change scores for the measures that are in the ROMA Core Outcome Set.

Janet: That makes a lot of sense, because I know in the paper, there are some formulas and statistical representations and discussions that might not be easily familiar to some of our listeners. It was a tough read in some parts of your paper, for sure.

Sarah: Yeah, it is. It's probably not the sort of paper that you sit down and read from start to finish, I think. Some of these concepts are complicated, and they are a bit dense, but I sort of see that paper almost as a reference guide. I think it's the sort of thing that you can come back to, and it does, you know, tend to make more sense over time.

Janet: You did give us one example about operationalizing outcomes with the Western Aphasia Battery and minimal important change. Are there a couple of other examples drawn from this paper that you might share, bringing it to the level of our daily clinical practice?

Janet: Sure. Well, I think, overall, one of the really nice things this paper does, is it actually explains that you can determine treatment success in a number of different ways. We go through concepts around, what approach would we take if we're trying to work out does this treatment work for this particular population, and how well does it work? Then we have different approaches where we’re looking at who does it work for, looking at individual change on outcome measures. It really walks you through approaches for group level analysis, looking at mean differences between groups in research trials, versus approaches for determining individual therapy response and outcomes, like minimal important change, and like smallest detectable change.

Janet: Is there an idea or a thought, from this paper and from your work in thinking about operationalizing outcomes that you might give to our listeners that they can put into practice on Monday morning in their clinical practice?

Sarah: Absolutely. This is something I've given a lot of thought about recently, because I think it's one thing to have a very theoretical sort of paper, and to think about the minutiae of all of these issues, but I think for clinical practice it comes down to probably about four different things. (One) I mentioned earlier, I really believe that meaningful outcome measurement starts with shared goal setting. You need to work with your clients to really set meaningful goals that are relevant to them, that they are invested in, and that are going to help them to achieve the outcomes that are important to them.

(Two) The next thing I think, is thinking about, “I have these goals.” We have Clinical Practice Guidelines, we have research evidence, and I would encourage clinicians to use those resources to then really think, “Well, which treatments do we know are effective? Which treatment is most likely to work for the person that I have sitting in my clinic?”

(Three) The next part is when we really get to the measurement part of it, which is really thinking about what you want to measure. Thinking about those goals, thinking about your treatment, where would you expect change to happen following that treatment? Are you looking for a change in function? Or in a behavior? Or is it a feeling, is it confidence that you're trying to change or, someone's emotional wellbeing or an attitude? What is it that you're actually looking to change?

(Four) Once you've determined what you want to measure, it's then thinking about what's the most appropriate way of measuring that? For something like confidence, the best way to measure that is that it really has to come from the person themselves. It's a PROM (Patient Reported Outcome Measure), it's patient reported, it's self-report. But there are many other ways that we can measure things: performance on a task; a report from a caregiver or significant other; it could be a clinician rating or report. It's really then thinking about what's the best way of measuring this? There are all these resources out there like the Shirley Ryan Ability Lab, or Stroke Engine. There are websites where they break these measures down and can give you some information about their psychometric properties. Do they measure what they say they measure? Is this tool reliable? Is it sensitive enough to actually pick up change? I think if you can consider all those things, then you're well on the way to successful measurement.

Janet: That's a tall order! But I think it's a good order. Perhaps if we started Monday morning with just one of those things, and felt comfortable implementing shared goal setting for example, and that became an easy-to-do, relevant part of our clinical work, then we might move on to the other points that you're making and gradually incorporate them.

Sarah: Absolutely. I think at a basic level make sure your goals match your outcome measures. Make sure you're measuring what you're actually trying to change, I think is the basic message.

Janet: Sarah, that sounds like a pearl of wisdom to me. What I would like to ask you as we draw this interview to a close, reflecting on your career beyond the ROMA papers and this paper that we've been talking about, operationalizing outcome measures, and reflecting on your research and clinical career, you've just dropped one pearl of wisdom. Are there any others or lessons learned that you would like to share with our listeners?

Sarah: Yeah, sure. Thinking about my career sort of in total, one of the real highlights of it has been collaboration. I think working together is my other pearl of wisdom, so to speak. I think when we work together and we collaborate, we use our efforts to the best, and in the most efficient way possible, we can reduce research wastage, and we can really put our combined efforts towards improving the lives of people with aphasia. Me personally, I'm involved in a group called the Collaboration of Aphasia Trialists and they have a brilliant website. They're a global network of aphasia researchers, with a lot of resources on their website, which are intended for clinicians to use. They have a particular emphasis on multilingual assessment and outcomes and treatment, which is relevant to all of us in the world that we live in. We're often seeing really diverse populations in the clinic. So, I think yeah, that's my other pearl.

Janet: Sarah, I am an ardent recycler and believe in reduce, reuse, recycle. You've mentioned twice now in our chat, about reducing research and clinical wastage. I think that's a great phrase I want to remember, so that we're not continuing to reinvent the wheel, or spending time and money and resources doing things over again, and wasting, I thank you for that term and that idea.

Sarah, thank you also for being my guest, and the guest of Aphasia Access, for this episode of Aphasia Conversations. I enjoyed our conversation, and I will also say, I think we could probably continue to talk for hours about several other topics, especially related to motivation and engagement and measurement, but we'll stop for now. I learned a lot of new things in reading to prepare for our discussion and also listening and talking with you. I think that your work in aphasia rehabilitation and change measurement is important, very important, not just from an academic point of view, or a third-party payer or funding point of view, but most importantly from the patient's point of view, so that we are delivering the best, most effective treatment we can in the most efficient manner. So, thank you for being my guest today.

Sarah: Thank you for having me, it's been a pleasure.

Janet: I also would like to take a moment to thank all of you, our listeners, for your continuing interest in Aphasia Access conversations. As a reminder, check the Show Notes for today's episode for any references or resources mentioned in today's podcast. For more information on Aphasia Access, and to access our growing library of materials, go to www.aphasia.access.org. If you have an idea for a future podcast topic, please email us at info at aphasia access.org. Thank you again for your ongoing support of Aphasia Access

References, Links, and Podcasts

References

Biel, M., Enclade, H, Richardson, A., Guerrero, A. & Patterson, J.P. (2022). Motivation in aphasia rehabilitation: A scoping review. American Journal of Speech-Language Pathology, 31,2421-2443. https://doi.org/10.1044/2022_AJSLP-22-00064

Breitenstein, C., Hilari, K., Menahemi-Falkov, M., L. Rose, M., Wallace, S. J., Brady, M. C., Hillis, A. E., Kiran, S., Szaflarski, J. P., Tippett, D. C., Visch-Brink, E., & Willmes, K. (2022). Operationalising treatment success in aphasia rehabilitation. Aphasiology. https://doi.org/10.1080/02687038.2021.2016594

Hinckley, J., Boyle, E., Lombard, D. & Bartels-Tobin, L. (2014) Towards a consumer-informed research agenda for aphasia: preliminary work, Disability and Rehabilitation, 36:12, 1042-1050, https://doi.org/10.3109/09638288.2013.829528 

Long, A. F., Dixon, P., Hall, R., Carr-Hill, R. A., & Sheldon, T. A. (1993). The outcomes agenda: Contribution of the UK clearing house on health outcomes. Quality in Health Care, 2 49–52. https://doi.org/10.1136/qshc.2.1.49

Wallace, S. J., Worrall, L., Rose, T., Le Dorze, G., Breitenstein, C., Hilari, K., Babbitt, E.… Webster, J. (2019). A core outcome set for aphasia treatment research: The ROMA consensus statement. International journal of stroke : official journal of the International Stroke Society, 14(2), 180–185. https://doi.org/10.1177/1747493018806200

Wallace, S.J., Worrall, L. Rose, T.A., Alyahya, R.S.W., Babbitt. E., Beeke. S., de Beer, C….Le Dorze, G. (under review). Measuring communication as a core outcome in aphasia trials: Results of the ROMA-2 international core outcome set development meeting. International Journal of Language and Communication Disorders.

Links

Collaboration of Aphasia Trialists.  https://www.aphasiatrials.org/

Comet Initiative. http://www.comet-initiative.org/

ROMA COS. Core outcome set for aphasia research – The Collaboration of Aphasia Trialists Shirley Ryan Ability Lab. https://www.sralab.org/

Stroke Engine. https://strokengine.ca/en/

Aphasia Access Podcasts

Episode #69: Motivation and engagement in aphasia rehabilitation: In conversation

with Michael Biel

Episode #88: Everyone’s an expert: Person-centeredness in the clinic and research - A

conversation with Jackie Hinckley

Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Ellen Bernstein-Ellis, Program Specialist at the Aphasia Treatment Program at Cal State East Bay in the Department of Speech, Language and Hearing Sciences, and a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.

I'm today's hosts for an episode featuring Dr. Arla Good and Dr. Jessica Richardson. 

We will discuss the SingWell Project and the role of aphasia choirs from a bio-psychosocial model. Today's shows features the following gap areas from the Aphasia Access State of Aphasia Report authored by Nina Simmons-Mackie: 

• Gap area #3: insufficient availability of communication intervention for people with aphasia, or the need for services. 
• Gap area #8: insufficient attention to depression and low mood across the continuum of care. 
• Gap area #5: insufficient attention to life participation across the continuum of care.

Guest Bios:

Dr. Arla Good is the Co-director and Chief Researcher of the SingWell Project, an initiative uniting over 20 choirs for communication challenges around the world. Dr. Good is a member of the Science of Music, Auditory Research and Technology or SMART lab at Toronto Metropolitan University, formerly Ryerson University. Much of her work over the last decade has sought to identify and optimize music based interventions that can contribute to psychological and social well-being in a variety of different populations. 

Dr. Jessica Richardson is an associate professor and speech-language pathologist at the University of New Mexico in the Department of Speech and Hearing Sciences, and the Center for Brain Recovery and Repair. She is director of the UN M brain scouts lab and the stable and progressive aphasia center or space. Her research interest is recovering from acquired brain injury with a specific focus on aphasia, recovery, and management of primary progressive aphasia. She focuses on innovations in assessment and treatment with a focus on outcome measures that predict real world communication abilities, and life participation.

Listener Take-aways

In today’s episode you will:

• Learn about the SingWell Project model of supporting choirs and research around the world
• Learn which five clinical populations are the initial targets of the SingWell Project
• Discover how the SingWell Project is challenging the stigma about disability and singing
• Learn about some of the biopsychosocial measures being used to capture choir outcomes

Transcript edited for conciseness

Show notes

Ellen Bernstein-Ellis  02:58

I'm going to admit that aphasia choirs have long been one of my clinical passions. I'm really excited and honored to host this episode today. I'd like to just start with a question or two that will help our listeners get to know you both a little better. So Arla, is it okay, if I start with you? Would you share what motivated you to focus your research on music-based interventions? Do you have a personal connection to music?

Arla Good  03:29

I feel like I could do a whole podcast on how I ended up in this field.

Ellen Bernstein-Ellis  03:33

That'd be fun.

Arla Good  03:34

There's just so many anecdotes on how music can be a powerful tool. I've experienced it in my own life, and I've witnessed it in other lives. I'll share one example. My grandfather had aphasia and at my convocation when I was graduating in the Department of Psychology with a BA, despite not being able to communicate and express himself, he sang the Canadian National Anthem, perfect pitch-- all of the words. It's just an accumulation of anecdotes like that, that brought me to study music psychology. And over the course of my graduate studies, I came to see how it can be super beneficial for specific populations like aphasia. 

So, I do have a quote from one of our choir participants that really sparked the whole idea of SingWell. It was a Parkinson's choir that we were working with. And she says, “At this point, I don't feel like my Parkinson's defines me as much as it used to. Now that I've been singing with the group for a while, I feel that I'm also a singer who is part of a vibrant community.” And that really just encapsulates what it is and why I'm excited to be doing what I'm doing--  to be bringing more positivity and the identity and strength into these different communities.

Ellen Bernstein-Ellis  04:49

Yes, the development of positive self-identity in the face of facing adversity is such an important contribution to what we do and thank you for sharing that personal journey. That was really beautiful. 

Jessica, I'm hoping to get to hear a little bit about why what your personal connection is to aphasia choirs and music.

Jessica Richardson  05:12

Again, so many things. I grew up in a musical household. Everyone in my family sings and harmonizes and it's just beautiful. But a lot of my motivation for music and groups came from first just seeing groups. So some early experience with groups at the VA. Seeing Dr. Audrey Holland in action, of course, at the University of Arizona-that's where I did my training. Dr. Elman, you, of course, so many great examples that led to the development of lots of groups. We do virtual online groups for different treatments, different therapies. We have space exploration. We have space teams, which is communication partner instruction that's virtual. So we do lots of groups. And of course, we have a neuro choir here in New Mexico. Now, I'm just so excited that there's so much research that's coming out to support it. 

Ellen Bernstein-Ellis  06:03

Jessica, can I just give you a little shout out? Because you were visionary. You actually created these amazing YouTube videos of your choir singing virtually, even before COVID. And you came out with the first virtual aphasia choir. I remember just sitting there and just watching it and being amazed. And little did we know. I guess you knew! Do you want to just take a moment because I want to put those links in our show notes and encourage every listener to watch these beautiful virtual choir songs that you've done. You’ve done two right?

Jessica Richardson  06:44

Yes. And I could not have done it, I need to make sure I give a shout out to my choir director, Nicole Larson, who's now Nicole Larson Vegas. She was an amazing person to work with on those things. She also now has opened a branch neuro choir, just one town over. We're in Albuquerque and she's in Corrales and our members can go to either one. We coordinate our songs. 

I'd really like to start coordinating worldwide, Ellen. We can share resources and do virtual choirs worldwide and with Aphasia Choirs Go Global. But I definitely want to give her a shout out. And then of course our members. I mean, they were really brave to do that. Because there was nothing I could point them to online already to say, “Hey, people are doing this. You do it.” So they were really courageous to be some of the first.

Ellen Bernstein-Ellis  07:36

Do you want to mention the two songs so people know what to look for? And just throw in the name of your choir.

Jessica Richardson  07:42

We're just the UNM neuro choir as part of the UNM Brain Scouts. The first song was The Rose. The second song was This is Me from the Greatest Showman. And the song journal that you could wait for in the future is going to be Don't Give Up On Me by Andy Grammer. 

Ellen Bernstein-Ellis  08:01

Beautiful! I can hardly wait. And there are some endeavors and efforts being made to create these international groups. Thank you for doing a shout out to Aphasia Choirs Go Global, which is a Facebook group to support people who are involved in neuro and aphasia choirs. I'll give a shout out to Bron Jones who helped start it and Alli Talmage from New Zealand who has worked really hard to build a community there. It's been really wonderful to have a place where we can throw out questions to each other and ask for opinions and actually dig into some interesting questions like, “What measures are you using to capture X, Y, or Z?” I think we’ll get to talk about some of that today, actually. So thank you. 

I encourage our listeners to listen to those two YouTube videos we'll put in the show notes. But Jessica, I’m going to give you a twofer here. I've been following your amazing work for many years, but the first time I got to meet you in person was at an Aphasia Access Leadership Summit. I wanted to ask you as an Aphasia Access member, if you have any particular Aphasia Access memories that you could share with our listeners?

Jessica Richardson  09:09

Well, it was actually that memory. So, I would say my all-time favorite collection of Aphasia Access moments, really was working with my amazing colleague, Dr. Katerina Haley. She's at UNC Chapel Hil. We were co-program chairs for the Aphasia Access 2017 summit in Florida. The whole summit, I still think back on it and just smile so wide. And you know, we went to the museum, we were at the Aphasia House, just so many wonderful things. All of the round tables and the presentations, they just rocked my world. And it's just something I'm super proud to have been a part of behind the scenes making it happen. And I also remember that you wrote me the nicest note afterwards. 

Ellen Bernstein-Ellis  09:54

It was just because it impacted me, too. Personally, I felt like it just cracked open such a world of being able to have engaging discussions with colleagues. Tom Sather, really named it the other day (at IARC) when he quoted Emile Durkheim’s work on collective effervescence, the sense of being together with a community. I'm seeing Arla, nodding her head too.

Arla Good

Yeah, I like that.

Ellen Bernstein-Ellis  

Yeah, there was a lot of effervescing at these Leadership Summits, and we have one coming up in 2023. I'm really excited about it and hope to get more information out to our listeners about that. So I'll just say stay tuned. And you'll be hearing more, definitely.

I just want to do one more shout out. And that is, you mentioned international collaboration. I'd like to do a quick shout out to Dr. Gillian Velmer who has been doing the International Aphasia Choirs. I’ll gather a couple of links to a couple of songs that she's helped produce with people around the world with aphasia singing together. So there's just some great efforts being done. 

That’s why I'm excited about launching into these questions. I want to start with an introduction of SingWell. Arla, would you like to get the ball rolling on that one?

Arla Good  11:09

For sure. SingWell began with my co-director, Frank Russo, and myself being inspired by that quote I shared at the beginning about singing doing something really special for these communities. We applied for a Government of Canada grant and we received what's called a Partnership grant. It really expanded well beyond just me and Frank, and it became a network of over 50 researchers, practitioners, national provincial support organizations, and it continues growing. 

It's really about creating a flow of information from academia to the community, and then back to academia. So understanding what research questions are coming up in these communities of interests. And what information can we, as researchers, share with these communities? That’s SingWell, I'll get into the research questions.

Ellen Bernstein-Ellis  12:03

Let's dive in a little bit deeper. What is SingWell’s primary aim?  That's something you describe really well in an article we'll talk about a little later.

Arla Good  12:15

So our aim is to document, to understand, group singing as a strategy, as a way to address the psychosocial well-being and communication for people who are living with communication challenges. SingWell, we're defining a communication challenge as a condition that affects an individual's ability to produce, perceive or understand speech. We're working with populations like aphasia, but also people living with hearing loss, lung disease, stuttering. I hope, I don't forget anybody. There are five populations. Parkinson's, of course.

Ellen Bernstein-Ellis  12:53

Perfect. So that's your primary aim. Do you want to speak to any secondary or additional goals for your project?

Arla Good  13:03

The second major pillar of this grant is to advocate and share the information with these communities. So, how can we facilitate the transfer of this knowledge? We've started a TikTok channel, so you can watch videos. We have a newsletter and a website that's continuously being updated with all the new information. We want to develop best practice guides to share with these communities about what we've learned and how these types of choirs can be run. And really, just mobilize the network of partners so that we're ensuring the information is getting to the right community.

Ellen Bernstein-Ellis  13:35

Wow. Well, I mentioned a moment ago that there's a 2020 article that you wrote with your colleagues, Kreutz, Choma, Fiocco, and Russo that describes the SingWell project protocol. It  lays out your long term goals. Do you want to add anything else to what you've said about where this project is headed?

Arla Good  13:54

Sure, the big picture of this project is that we have a network of choirs that are able to address the needs of these different populations. I want the network to be dense and thriving. The home of the grant is Canada. But of course, we have partners in the states, like Jessica, and in Europe and in New Zealand. So to have this global network of choirs that people can have access to, and to advocate for a social prescription model in healthcare. Have doctors prescribing these choirs, and this network is available for doctors to see, okay, here's the closest choir to you. So, in some ways, this is a third goal of the project is to be building this case for the social prescription of singing. 

Ellen Bernstein-Ellis  14:41

Before we go too much further, I want to acknowledge that you picked a wonderful aphasia lead, Dr. Jessica Richardson. That's your role, right? We haven't given you a chance to explain your role with SingWell. Do you want to say anything about that Jessica?

Jessica Richardson  14:58

Yeah, sure. I'm still learning about my role. Overall, I know theme leaders, in general, were charged with overseeing research directions for their theme. Aphasias, the theme that I'm leader of, and then monitoring progress of research projects and the direction of that. So far, it's mostly involved some advising of team members and reviewing and giving feedback of grant applications. I'm supposed to be doing more on the social and networking end and I hope to be able to make more that more of a priority next year, but I do think this podcast counts. So thank you for that. 

Ellen Bernstein-Ellis  15:33

Well, you did a wonderful presentation. I should be transparent, I was invited to be on the Advisory Committee of SingWell, and I got to hear your first presentation at the first project meeting where each team leader explained their focus and endeavor. I was so excited to hear the way you presented the information on aphasia, because again, we know that for some people, aphasia is not a well-known name or word. And even though this is a very educated group, and I think everybody, all the leaders know about aphasia, but it was nice to see you present and put on the table some of the challenges and importance of doing this research. 

One of the things that really attracted me when reading about that 2020 article is that you talk about SingWell having an ability versus disability focus early, Arla, could you elaborate on that?

Arla Good  16:22

Our groups are open to anybody, regardless of their musical, vocal or hearing abilities. And we compare it often to the typical talk-based support groups that focuses on challenges and deficits. Of course, there's a time and place, these can provide a lot of benefit for people living in these communities. So, this isn't a replacement for these types of support groups,  But, singing is a strength-based activity. They're working together to create a beautiful sound and there's often a performance at the end that they're very proud of. We're challenging stigma, especially in a population like aphasia, where it would seem like, oh, you have aphasia, you can't sing? But, of course they can. We’re challenging that stigma of who can sing and who can't sing. We find that it's just so enjoyable for these people to be coming and doing something strength- based and feeling good. Going back to that, quote I said at the beginning, right? To feel like there's more to their identity than a diagnosis. This is what keeps them coming back. 

Ellen Bernstein-Ellis  17:22

Beautifully said, and I can't help but think how that really connects with the life participation approach. There's no one better than Jessica, for me to throw that back out to her, and ask how she sees the connection between that.

Jessica Richardson  17:37

Yes, absolutely. Their focus on ability and fighting loneliness and isolation and on social well-being is right in line with it. Because LPAA is really focusing on reengagement in life, on competence, rather than deficits, on inclusion, and also on raising the status of well-being measures to be just as important as other communication outcomes. 

I want to make sure we also bring up something from our Australian and New Zealand colleagues, the living successfully with aphasia framework, because it is also in line with LPAA and SingWell. I can say they have this alternative framework. They also don't want to talk about the deficit or disability. It doesn't try to ignore or even minimize the aphasia, but it emphasizes positive factors, like independence, meaningful relationships, meaningful contributions, like you know that performance. So there's just so much value and so much alignment with what Aphasia Access listeners and members really care about. 

Ellen Bernstein-Ellis  18:44

That's a great transition for what I was thinking about next. I was very excited to see people talking about the 2018 review by Baker, Worrall, Rose and colleagues that identifies aphasia choirs as a level one treatment in the step psychological care model for managing depression in aphasia. So that's really powerful to me, and we're starting to see more research come out looking at the impact of participating in aphasia choirs. I'm really excited to see some of this initial research coming out. 

Maybe you can address what some of the gaps in the literature might be when it comes to group singing? And its impact on well-being. Maybe Arla, we can start with that and then Jessica, you can jump in and address specifically communication and aphasia choirs. Arla, do you want to start out?

Arla Good  19:35

This is a very exciting time, like you said, there is research that is starting to come out. People are starting to study choirs as a way of achieving social well-being, psychological well-being and so the field is ripe and ready for some good robust scientific research. 

Most of the studies that are coming out have really small sample sizes. It's hard to get groups together, and they often lack comparison groups. So what I think SingWell is going to do is help understand the mechanisms and what is so great about singing and what singing contributes. The other thing I'd like to mention is that with SingWell, our approach is a bit unique compared to what some of the other research researchers are doing, in that we're adopting a very hands-off approach to choir. So we're letting choir directors have the autonomy to organize based on their own philosophies, their expertise, and the context of their choirs. So we call it choir in its natural habitat.

And this is giving us the opportunity to explore group effects. What approach is the choir director taking and what's working, what's not working? And to have this large sample of different types of choirs, we can learn a lot from this number, this type of research project as well.

Ellen Bernstein-Ellis  20:54

What I really love about that is getting to know some of these wonderful colleagues through Aphasia Choirs Go Global and hearing about what their rehearsals and goals look like. There are some amazing similarities, just like saying, “You're doing that in Hungary? But we're doing that here, too.”  And there are some wonderful differences. I really firmly believe that there are a variety of ways to do this very successfully, just like there are a variety of ways to run successful aphasia groups, but there's going to be some core ingredients that we need to understand better. 

Just before I go too far away from this, how about you? Do you want to speak to anything we need to learn in the literature about aphasia choirs?

Jessica Richardson  21:35

Yeah, I mean, I don't think I'm saying too much different than Arla. Arla, may want to follow up. But the main gap is that we just don't have enough evidence. And we don't have enough, like she said, solid methodology, high fidelity, to even support its efficacy to convince stakeholders, third party payers, etc. Anecdotal evidence is great, and YouTube videos that we create are also great, but it's not enough. And even more and more choirs popping up around the world, it's not enough.

We need that strong research base to convince the people that need convincing. SingWell is hoping to add to that through its pilot grants, through its methodology that they share for people to use. And I'm hopeful that other organizations, you know, like Aphasia Choirs Go Global, can link up at some point with saying, “Well, I'm excited about communities like that that are also supportive of researching choirs.” Arla, think I saw you're wanting to follow up.

Arla Good  22:31

I just wanted to add to something that Ellen had said about the power and diversity and having these different perspectives. And another goal of SingWell is to create, and it's up on the website already, it's a work in progress, it's going to continue growing, but a menu of options for choir directors who are looking to start a choir like this. Like if you want this kind of goal, here are some tips. So, if it's a social choir, you might want to configure the room in a circle. But if you have musical goals, maybe you want to separate your sopranos, your altos, tenors, and your bass. It’s not one prescribed method. It's a menu of items that we're hoping we can through, this diversity of our network, that we can clarify for people who are trying to start a choir for themselves.

Ellen Bernstein-Ellis  23:19

I love that because I can hear in my head right now, Aura Kagan saying over and over again that the life participation approach is not a prescriptive approach. But rather, you're always looking at what is the best fit for your needs. Jessica, your head is nodding, so do you want to add anything?

Jessica Richardson  23:37

It's a way to shift your whole entire perspective and your framework. And that's what I love about it.

Ellen Bernstein-Ellis  23:44

We'll just go back to that 2020 article for a moment because I really liked that article. You and your authors describe four measures of well-being and there are potential neuroendocrinological, that's really a lot of syllables in here, but I'll try to say it again, neuroendocrinological underpinnings, 

Arla Good  

The hormones---

Ellen Bernstein-Ellis  

Oh, that's better, thank you, the hormones, too. Could you just take a moment and please share what these four measures of well-being and their hormonal underpinnings might be?

Arla Good  24:11

For sure. The first one is connection, the connectedness outcome. So we're asking self-report measures of how connected people feel. But we're also measuring oxytocin, which is a hormone that's typically associated with social bonding. 

The second measure is stress. And again, we're asking self-report measures, but we're also looking at cortisol, which is a hormone associated with stress. 

The third measure is pain. And this one's a little bit more complex, because we're measuring pain thresholds. Really, it sounds scary, but what we do is apply pressure to the finger and people tell us when it feels uncomfortable. So it's actually well before anyone's experiencing pain. But we're thinking that this might be a proxy for beta endorphin release. So that's the underpinning there. 

And then the last outcome is mood. This is also a self-report measure. And one of the types of analyses that we're running is we want to see what's contributing to an improved mood. Is it about the cortisol? Is it about just like deep breathing and feeling relaxed? Is it that or is there something special happening when they feel the rush of oxytocin and social connectedness? The jury's still out. These are super preliminary data at this point, especially with oxytocin, there's so much to learn. But those are some of the hormones, the sociobiological underpinnings that we're exploring.

Ellen Bernstein-Ellis  25:31

That makes for some really exciting research and the way you frame things, SingWell is supporting grants, maybe you could comment on how its biopsychosocial framework influences the methods and outcome measures that you want to adopt.

Arla Good  25:48

Sure, we do provide guidelines and suggestions for measures. Jessica alluded to this. We have it all up on the website, if anyone else wants to run a study like this. And then we have some that we're requiring of any study that's going to be funded through SingWell. And this is so we can address this small sample size problem in the literature. So the grant runs for six more years. It's a seven year grant. And at the end, we're going to merge all the data together for one mega study. We want to have some consistency across the studies, so we do have some that are required. And then we have this typical SingWell design. We're offering support for our research team, from what a project could look like.

Ellen Bernstein-Ellis  26:28

Well, this podcast typically has a wonderful diverse demographic, but it includes researchers. and clinical researchers who collaborate. So, let's take a moment and have you describe the grant review process and the dates for the next cycle, just in case people want to learn more.

Arla Good  26:45

Sure, so we are accepting grants from SingWell members. So the first step is to become a SingWell member. There is an application process on the website. We have an executive committee that reviews the applications twice a year, the next one is in scheduled for November. There's some time to get the application together. Once you're in as a member, the application for receiving funding is actually quite simple. It's basically just an explanation of the project and then it will undergo a review process. Jessica is actually one of our reviewers, so she can speak to what it was like to be a reviewer,

Ellen Bernstein-Ellis  27:21

That would be great because, Jessica, when you and I chatted about it briefly, I've never heard a reviewer be so excited about being supportive in this process. So please share a little bit more because I thought your perspective was so refreshing and positive. 

Jessica Richardson  27:36

I have to say too, I have definitely benefited from having some amazing reviewers in my own lifetime. I definitely have to point out one who was so impactful, Mary Boyle, her review, it was so thorough, and it was so intense, but it elevated one of my first endeavors into discourse analysis to just like a different level. And just the way that she treated it as a way to help shape, she was so invested, in just making sure that we were the best product out there. I learned what the world needed to learn. I definitely learned a lot from that experience and from other reviewers like her that I've benefited from. 

As a reviewer, whenever I review anything, I try to keep that same spirit. So when I was doing SingWell reviews, I made sure that I revisited the parent grant. I did a really good, thorough reread. I provided feedback and critiques from the lens of how does this fit with SingWell’s aims? And, how can it be shaped to serve those aims if it isn't quite there yet? So it's never like, “Ah, no, this is so far off”, it was just like, “Oh, where can we make a connection to help it fit?” Then trying to provide a review that would be a recipe for success, if not for this submission cycle, then for the next. 

And as a submitter, even though I mean, we didn't have a meeting to like all take this approach. But I felt that the feedback that I received was really in that same spirit. And so I love feedback in general. I don't always love the rejection that comes with it. But I do love stepping outside of myself and learning from that different perspective. And I've really just felt that this thing while reviewers were invested, and were really just interested in shaping submissions to success,

Ellen Bernstein-Ellis  29:24

That’s really worthwhile, right? So you get something, even if you're not going to get funding. You still get to come away with something that's valuable, which is that feedback. 

We’ve been talking about measures and I'm really interested in that as a topic. Jessica, could you take a moment and share a little bit about how SingWell’s pre/post measures are being adopted for aphasia?  We all know that's some of the challenges. Sometimes, some of the measures that we use for mood, connectivity, or stress are not always aphasia-friendly. So what does that process look like?

Jessica Richardson  29:59

I will say they did their homework at the top end, even before the proposal was submitted. Really having you on the advisory board, and I was able to give some feedback on some of the measures. Some of the measures they’ve already selected were specific to aphasia. For Parkinson's disease, there are Parkinson's disease specific measures and for stuttering, specific measures. And for aphasia, they picked ones that are already aphasia-friendly. What I was super excited about too, is that they included discourse without me asking. It was already there. I think we helped build it to be a better discourse sample and we've added our own. So it's already in there as their set of required and preferred measures. But the other thing is that the investigator, or investigators, have a lot of latitude, according to your knowledge of the clinical population that you're working with, to add outcomes that you feel are relevant. That's a pretty exciting aspect of getting these pilot funds. 

Ellen Bernstein-Ellis  30:58

So there's both some core suggested measures, but there's a lot of latitude for making sure that you're picking measures that will capture and are appropriate to your particular focus of your projects. That's great. Absolutely.

Jessica Richardson  31:09

I definitely feel that if there were any big issue that we needed to bring up, we would just talk to Arla and Frank, and they would be receptive.

Ellen Bernstein-Ellis  31:20

I’ve been very intrigued and interested in attempts to measure social connectedness as an outcome measure. You speak about it in your article, about the value of social bonding and the way music seems to be a really good mechanism to efficiently create social bonding. Is there something about choir that makes this factor, this social connectedness, different from being part of other groups? How are you going to even capture this this factor? Who wants to take that one?

Arla Good  31:50

I do, I can talk, we can do another podcast on this one.

Jessica Richardson  31:55

It's my turn, Arla. I'm just kidding (laughter).

Ellen Bernstein-Ellis  32:01

You can both have a turn. You go first, Arla,  And then Jessica, I think you will probably add,

Jessica Richardson  32:04

I'm totally kidding (laughter).

Ellen Bernstein-Ellis  32:06

Go ahead, Arla.

Arla Good  32:07

This is what I did my dissertation on. I truly believe in the power of group music making. So singing is just an easy, accessible, scalable way to get people to move together. It's consistent with an evolutionary account that song and dance was used by small groups to promote social bonding and group resiliency. I've seen the term collective effervescence in these types of writings. 

When we moved together, it was like a replacement for in our great ape ancestors, they were one on one grooming, picking up the nits in each other's fur. Human groups became too large and too complex to do one on one ways of social bonding. And so we needed to develop a way to bond larger groups rapidly. 

And the idea here is that movement synchrony, so moving together in precise time, was one way of connecting individuals, creating a group bond. Singing is just a fun way of doing that. I've been studying this for about 15 years and trying to understand. We've pared it down, right down to just tapping along with a metronome, and seeing these types of cooperation outcomes and feelings of social bonding, connectedness. I do think there's something special, maybe not singing specifically, but activities that involve movement synchrony. We could talk about drumming, we could talk about dance, I think that there is a special ingredient in these types of activities that promote social bonds.

Jessica Richardson  33:37

There’s been some of us even looking at chanting, there's research about that as well. 

Arla Good  

We should do a SingWell study on chanting!

Ellen Bernstein-Ellis  33:43

Jessica, what else do you want to add about what is important about capturing social connectedness? Or, how do we capture social connectedness?

Jessica Richardson  33:53

I think I'll answer the first part, which is, what is special about thinking about it and capturing it. It’s something that we've slowly lost over decades and generations, the communal supports. Our communities are weakened, we're more spread out. It's also a way of bringing something back that has been so essential for so long. We've weakened it with technology, with just all the progress that we've made. It’s a way to bring something that is very primitive and very essential back. So, that doesn't totally answer your question, though.

Ellen Bernstein-Ellis  34:31

When we think about the isolation related to aphasia and the loss of friendship, and some of the wonderful research that's coming out about the value and impact of friendship on aphasia, and then, you think about choirs and some of this research--I believe choir is identified as the number one most popular adult hobby/activity. I think more people are involved in choirs as an adult. It's not the only meaningful activity, but it's a very long standing, well developed one,

Jessica Richardson  35:03

We have to figure out how to get the people though who will not touch a choir with a 10 foot pole?

Ellen Bernstein-Ellis  35:08

Well, we will continue to do the work on the other groups, right, that suits them very well. You know, be it a book club, or a gardening group, or a pottery class, or many, many, many other choices.

Jessica Richardson  35:21

Or a bell choir?

Ellen Bernstein-Ellis  35:24

Bell choirs are great, too. 

Do either of you want to speak to what type of measures captures social connectedness or what you're using, or suggesting people try to use, for SingWell projects?

Jessica Richardson  35:38

I think Arla already captured some of those with those markers that she was talking about earlier. Hormonal markers. But the self-report questionnaires, and that perspective. There's other biomarkers that can very easily be obtained, just from your spirit. So I think that's going in the right direction, for sure.

Arla Good  35:59

Yeah, we've also looked at behavioral measures in the past like strategic decision making games, economic decision making games, and just seeing if people trust each other, and whether they're willing to share with each other. We've asked people how attractive they think the other people are. Questions like this that are capturing the formation of a group, whether they're willing to share with their in-group.  It's a question of in-group and out-group, and what are some of the effects of the in-group.

Jessica Richardson  36:26

And we're definitely exploring too, because we do a lot of neurophysiological recording in my lab. Is there a place for EEG here? Is there a place for fNIRS, especially with fNIRS, because they can actually be doing these things. They can be participating in choir, we can be measuring things in real time. While they're doing that, with the fNIRS-like sports packs, so sorry, fNIRS is functional near-infrared spectroscopy in case some of the listeners aren't sure.

Ellen Bernstein-Ellis  36:52

I needed help with that one too. Thank you. 

I'm thinking about some of the work done by Tom Sather that talks about the sense of flow and its contribution to eudaimonic well-being, right? I think that's a key piece of what SingWell is looking at as well. It’s exciting to look at all these different measures, and all these different pillars that you are presenting today. 

And if people want to find out more about SingWell, do you want to say something about your website, what they might find if they were to go there?

Arla Good  37:25

Yes, go to the website, SingWell.org, pretty easy to remember. And on the website, you'll find all the resources to run a research study, to apply to be a member. We have resources for choir directors who are looking to start their own choir, we have opportunities to get involved as research participants if you're someone living with aphasia, or other communication challenges. There's lots of opportunities to get involved on the website. And you can sign up for our newsletter and receive the updates as they come and check out our website.

Ellen Bernstein-Ellis  37:57

That's great. I certainly have been watching it develop. And I think it has a lot of really helpful resources. I appreciate the work that's been put into that. How do people get involved in the SingWell project? You mentioned earlier about becoming a member. Is there anything else you want to add about becoming engaged with SingWell? 

Arla Good  38:18

I think the ways to become involved, either becoming a member or starting a choir using the resources, or like I said, signing up for the newsletter just to stay engaged. And as a participant, of course, doing the surveys or signing up for a choir if you're one of the participants called.

Ellen Bernstein-Ellis  38:35

Thank you. I'm was wondering if you'd share with the listeners any sample projects that are underway. 

Arla Good  38:46

For sure. So we have five funded studies this year. We have one ChantWell, which Jessica spoke about, assessing the benefits of chanting for breathing disorders. That's taking place in Australia. The effects of online group singing program for older adults with breathing disorders on their lung health, functional capacity, cognition, quality of life, communication skills and social inclusion. That is in Quebec, Canada. The third study, the group singing to support well-being and communication members of Treble Tremors. That's a Parkinson's choir taking place in Prince Edward Island, Canada. The fourth is how important is the group in group singing, so more of a theoretical question looking at group singing versus individual singing, an unbiased investigation of group singing benefits for well-being and that's also in Quebec. And then last but not least, I saved it for last, is our very own Jessica Richardson’s group singing to improve communication and well-being for persons with aphasia or Parkinson's disease. So I thought I might let Jessica share, if she's open to sharing some of what the research study will entail.

Jessica Richardson  39:53

Oh, yes, thank you. When we first started our neuro choir, I had envisioned it as being an aphasia choir. And we had so much need in the community, from people with other types of brain injury. Our Parkinson's Disease Association, too, has really been reaching out ever since I've moved here. They have a group actually, they're called the Movers and Shakers, which I really love. So, we have a pretty healthy aphasia cohort of people who are interested, who also, you know, taking a break and only doing things virtually if they are interested, you know, since COVID. And then we have our Parkinson's cohort here as well, the Movers and Shakers, were following the suggested study design, it's a 12 week group singing intervention. They have suggestions for different outcome measures at different timescales, we're following that and adding our own outcome measures that we also feel are relevant. So we have those measures for communication and well-being, including the well-being biomarkers through the saliva. As she mentioned, already, we have latitude for the choir director, like who we want to pick and what she or he wants to do. We already have that person picked out. And we already know, and have all of that stuff figured out. There is some guidance, but again, flexibility for our session programming. And we have the choices over the homework programming, as well. We are really looking at this choir in the wild, and looking at those outcomes with their measures. So we're excited about it.

Ellen Bernstein-Ellis  41:22

I think you've just thought of a great name for a future aphasia choir, which is a “neuro choir choir in the wild”

Jessica Richardson  41:30

Well, out here, we're a choir in the wild, wild west.

Ellen Bernstein-Ellis  41:34

There you go. Absolutely. What have been some of the most surprising findings of the benefits of singing so far that have come in through the SingWell project? Either of you want to take that on?

Arla Good  41:46

I don't know if it's the most surprising, but it's definitely the most exciting. I'm excited to continue unpacking what's happening with oxytocin, I think it's a pretty exciting hormone, it's pretty hot right now. It’s typically associated with being like a love hormone. They call it associated with sex, and it's associated with mother-infant bonding. If we can find a way that's not mother-infant or pair bonding to release oxytocin, that's very exciting. If group singing is one of those ways to promote this sense of “I don't know where I end and you begin, and we're one” and all those loving feelings. As Jessica mentioned, the missing piece, and how we relate to each other in a society, choir might be an answer to that. I'm really excited about the oxytocin outcome measure. Again, it’s still very early, I don't want to say definitively what's happening, but it's a pretty exciting piece.

Jessica Richardson  42:45

I have a future doctoral student that's going to be working on this. That is the part she's most interested in as well..

Ellen Bernstein-Ellis  42:52

So there are some really good things that, hopefully, will continue to tell us what some of these benefits are and that it's important to fund and connect people to these types of activities. You said, this is like year one or two of a 6 year project, was that right? Or is it seven year?

Arla Good  43:09

It’s seven year.

Ellen Bernstein-Ellis  43:10

So what is your hope for the future of the SingWell project?

Arla Good  43:15

The secondary goals would be the hope for the future, of actually creating change in the communities and getting people to think outside the box of providing care. Is there a choir that can be prescribed nearby? Is there a way to train these choir directors so that they have the correct training for this specific population? So drawing from the knowledge from speech- language therapy, from choir direction, from music therapy-

Ellen Bernstein-Ellis  43:42

Music therapy, right.

Arla Good  43:43

Of course, of course. So creating an accreditation program and training choir directors to lead choirs like this, and having this army of choir directors around the world that are doing this. So, this is a big goal. But that's what I hope to see.

Ellen Bernstein-Ellis  44:00

That's fantastic. And I think there's some researchers who are really working hard at looking at protocols and asking these questions. And I know, I've been inspired by some of the work that Ali Talmage is doing in New Zealand that's looking at some of these questions. And, Jessica, do you want to add what's your hope is as aphasia lead? Or, what you're thinking about for the SingWell project that you're excited about?

Jessica Richardson  44:21

We have to generate that evidence that we need and mentioning again, those 10 foot pole people, to reach out to let people know that choirs aren't just for people who think that they can sing. We definitely have had some very energetic and enthusiastic choir members who think that they can sing and cannot, and they're still showing up. Maybe you're the one who thinks that choirs aren't for you. If we can generate enough energy, inertia, and evidence to convince those that it might be worth giving a try. I think some of them are going to be surprised that they enjoy it and “oh, I can sing.” So I think that to me is a future hoped for outcome.

 And then again, seeing it spread out to other gardening groups, other yoga groups, all these other things that we know are happening within Aphasia Access members and beyond to see, okay, there's this methodology. This is what's used to study something like this, let's apply it also so that its efficacy data for these other approaches that we know and we see can be helpful, but we don't have enough proof to have someone prescribe it and to get those stakeholders involved.

Ellen Bernstein-Ellis  45:33

Yes. And we talked about the importance of some of the work that's being done with mental health and aphasia and how some of the information that you're pursuing could really tie in and help us support and get more work in that area as well. So really exciting. 

I can't believe we have to wrap up already. I agree with you all, that we could just keep talking on this one. But let's just end on this note, I would like to find out from both of you. If you had to pick just one thing that we need to achieve urgently as a community of providers and professionals, what would that one thing be? What would you like to speak to? At the end of this discussion we've had today and Arla, you get to go first again.

Arla Good  46:15

The one thing we need to achieve urgently is to find a way to address people's needs in a more holistic way. And to see the human as a whole, that it's not just this piece and this piece and this piece, but all of it together? And how can we do that? How can we communicate better as practitioners, as researchers, so that we can address these needs more holistically?

Ellen Bernstein-Ellis  46:36

Thank you. Thank you. And Jessica, what would you like to say?

Jessica Richardson  46:41

I could just say ditto. I totally agree. So the end. 

But I think the other part is from a clinician standpoint. What I hear most from colleagues that are out there in the wild, and former students, is that they want the “How to” info which is perfect, because, SingWell has a knowledge mobilization aim, and the exact aim of that is to develop and share best practice guides, which you know, are already mentioned, choir sustainability guides, how to fund it, how to keep it going. Really important. And they're going to update these regularly. It's going to be available in lots of languages. So that's something I'm especially excited for, for our community, because I know so many people who want to start a choir, but it feels too big and intimidating, and maybe they don't feel like they have the musical chops. But this will really help them get over that hump to get started and will address that need. And that desire, that's already there, in a big way. 

Ellen Bernstein-Ellis  47:42

Thank you. I'm so appreciative that you both made this happen today. It was complicated schedules. And I just really, really appreciate want to thank you for being our guests for this podcast. It was so much fun. I'm excited to follow the SingWell project over the next seven years and see what continues to grow and develop. 

So for more information on Aphasia Access, and to access our growing library of materials, please go to www.aphasiaaccess.org And if you have an idea for a future podcast series topic, just email us at info@aphasiaaccess.org And thanks again for your ongoing support of Aphasia Access. Arla, Jessica, thank you so much. Thank you. 

References and Resources 

UNM Neuro Choir:

www.singwell.org

Good, A., Kreutz, G., Choma, B., Fiocco, A., Russo, F., & World Health Organization. (2020). The SingWell project protocol: the road to understanding the benefits of group singing in older adults. Public Health Panorama, 6(1), 141-146.

Good, A., & Russo, F. A. (2022). Changes in mood, oxytocin, and cortisol following group and individual singing: A pilot study. Psychology of Music, 50(4), 1340-1347.

Interviewer info 

Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic communication impairments. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer. 

Guest bios 

Melinda Corwin is a university distinguished professor and clinical supervisor at the Texas Tech University Health Sciences Center (TTUHSC) Department of Speech, Language, and Hearing Sciences, where she has worked since 1994. Prior to her university position, she worked as a hospital speech-language pathologist. She directs the Stroke & Aphasia Recovery (STAR) Program, a community outreach program in Lubbock, Texas, for persons with aphasia and their families. 

Brooke Hallowell is professor and dean of health sciences at Springfield College. Brooke is a specialist in neurogenic communication disorders, and has been working clinically, teaching future clinicians, and engaging in research on aphasia for 25 years. She is known for transnational research collaboration, academic and clinical program development, and global health programming in underserved regions of the world. A pioneer in using eyetracking and pupillometry to study cognition and language in adults, she holds patents on associated technology. Professor Hallowell is the author of Aphasia and Other Acquired Neurogenic Language Disorders: A Guide for Clinical Excellence.

Listener Take-aways

In today’s episode you will:

• Identify key differences between clinician-centered care and person-centered care.
• Understand gaps in current training regarding the Life Participation Approach.
• Learn about the Aphasia Access knowledge course.

Edited show notes

Lyssa Rome

Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California, and I see clients with aphasia and other neurogenic communication impairments in my LPAA focused private practice. Aphasia Access strives to provide members with information, inspiration and ideas that support their aphasia care through a variety of educational materials and resources.

I'm pleased to be joining the podcast as today's host for an episode that will feature Melinda Corwin and Brooke Halliwell. We’ll be discussing Aphasia Access’s new online project, Person-Centered Care: The Life Participation Approach to Aphasia Knowledge Course, which debuts this month, I had the pleasure of playing a small role in this project as the narrator for the course. 

Melinda Corwin is a University Distinguished Professor and clinical supervisor at the Texas Tech University Health Sciences Center Department of Speech, Language and Hearing Sciences, where she has worked since 1994. Prior to her university position, she worked as a hospital speech language pathologist. She directs the Stroke and Aphasia Recovery, or STAR, program, a community outreach program in Lubbock, Texas, for persons with aphasia and their families.

Brooke Hallowell is a professor and dean of health sciences at Springfield College. Brooke is a specialist in neurogenic communication disorders and has been working clinically, teaching future clinicians, and engaging in research on aphasia for 25 years. She is known for transnational research collaboration, academic and clinical program development, and global health programming in underserved regions of the world. A pioneer in using eye tracking and pupillometry to study cognition and language and adults, she holds patents on associated Technology. Professor Halliwell is the author of Aphasia and Other Acquired Neurogenic Language Disorders: A Guide for Clinical Excellence, Second Edition. 

Thank you for joining me. I wanted to start with an “aha moment,” anything that stands out for you in terms of the Life Participation Approach. Who would like to start?

Melinda Corwin

So, at our university, I got to meet a man who was in his 60s, he had survived a stroke two years prior, he was single and living in a long term care facility. He didn't have any family locally. He came to our university community outreach program for people with aphasia. And after about six months of being with us, he confided to his student clinician one day that he wondered if he could work out a payment plan to pay for throat surgery to fix his problems with speech and communication. And we realized that he did not understand the nature of aphasia. He actually thought there was a surgery available to fix or cure it, and that because he was low income, he didn't have the money to afford it. 

That was my aha moment, where I realized that we had failed him, our system had failed him. This man deserved to have access to his health information regarding his diagnosis, his condition, his prognosis, and he didn't get that as part of his ability to participate in his life and in his health care plan. And I knew we could do better. And so I found colleagues and friends through Aphasia Access, and I'm really hoping and working towards a systemic change for that reason. 

Lyssa Rome

Thank you. Brooke, what about you?

Brooke Hallowell

Well, I continue to have aha moments. For for me, one that stands out relates to my role as an educator and a person who teaches courses in aphasia and author to support learning and future clinicians who will be working with people who have aphasia. It was hard for many of us who were raised with a focus on medical and impairment-based, deficit-focused models of aphasia, to integrate our appreciation for foci on life participation with how we were taught, and may have previously taught and mentored our students. It's as if, for many of us, the recognition of how essential it is for us to embrace life participation was there long before we had a good grasp on how to integrate life participation holistically into our educational content. We wanted to make sure our students knew about medical, neuroscientific, neuropsychological, psycholinguistic, etc., aspects of aphasia, and we wanted to make sure they knew about the theoretical underpinnings of aphasia-related content. So if you think about what we can cover in a course, in our limited time with future clinicians, we felt and still do just never have sufficient time to delve into some of the really critical life participation content. 

So for me it kind of aha moment. Although I gotta say it wasn't. So sudden as a flash at a single moment in time, maybe an aha phase. It relates to the importance of helping current and future clinicians embrace that we all need to be able to hold several conceptual frameworks about aphasia in our minds at the same time, and that by understanding and appreciating multiple perspectives, we didn't have to necessarily choose one over the other. We didn't have to argue about which models were better than others, or whether working on impairment level deficits was somehow not essential to life participation. Once that realization was clear within me, I found that it was easier to integrate life participation and the ICF framework through our all of our discussions and teaching about aphasia and other disorders as well. 

Many of us invested in life participation approaches have supported one another in that sort of integration of multiple frameworks in our thinking, and in our work. Aphasia Access has been a powerful force in that regard. The mutual support to hold life participation paramount, no matter what are other theoretical perspectives, and medical or non-medical orientations.

Lyssa Rome

Thank you. I think that leads really nicely, actually, into this topic of the knowledge course that that Aphasia Access has developed and that's debuting this month. So can you tell us a little bit more about the project and how it began?

Melinda Corwin

The project began with the plight of both people with aphasia and speech language pathologist. Of course, SLPs know that people with aphasia want to participate in life, which means their current life as a patient, or in their life when they go back home and their life years into the future. The plight for speech language pathologists is that they face enormous time limitations, insurance reimbursement constraints, they have increased workload across all the different healthcare systems and settings. And so providing true person-centered care, health equity, and personalized goals for each person that we serve can feel almost impossible. 

This challenge was so pervasive that it appeared in a comprehensive report written by Nina Simmons-Mackie in 2018, called Aphasia in North America, and it's available from Aphasia Access. In her report, she listed the gap areas and so we really wanted to focus on gap area number five, which is related to insufficient attention to life participation across the continuum of care. And also gap area number six, which is related to insufficient training and protocols or guidelines to aid speech language pathologists and other health care professionals in the implementation of this participation-oriented intervention across the continuum of care.

So the year that her report came out a team of aphasia clinicians, researchers, and program providers mobilized to invent a product to concretely try to address these gap areas. We wanted to offer busy clinicians and healthcare professionals training that they wouldn't have to travel to, and something that was more than a webinar. We did a lot of research to produce the learning experience, and we tried to provide the most contemporary, interactive learning methods for adults. Our beta testers have said that they have found the course to be different and highly valuable.

Lyssa Rome

So I think obviously, there's this big need. And I'm wondering, Brooke, maybe if you could speak a little bit more to how this person-centered care approach can support the goals of increasing life participation, and maybe differentiate a little bit between clinician-centered care and person-centered care for people with aphasia?

Brooke Hallowell 

Sure. In clinician-centered care, the clinician is really in charge of all aspects of intervention. The clinician is the boss. The clinician decides what will be assessed and how it will be assessed. The clinician interprets the assessment results. And from that, sets goals for the person with aphasia. And the clinician decides on the treatment methods that will be used to reach those goals. And that's very different from person-centered care, where the person and the clinician are collaborators from the start, they work together to determine priorities for what that person really wants to be able to do in life and how communication affects what a person wants to do.

In person-centered care, the person's priorities are really the primary focus of assessment and goal setting and every aspect of intervention. And the person and the clinician set goals collaboratively, often including other people that are important in that person's life. And together, they collaborate in selecting what goals will get prioritized, and what the context is for working on those goals that's most relevant to the person. 

So the person's priorities are at the heart of our work in person-centered care. We clinicians collaborate with the person, and those people who are important to the person, at every stage of goal setting, assessment, treatment planning, etc.

Lyssa Rome

So thinking about person-centered care, I'm wondering if you can describe a little bit more about the goals of this knowledge course and how they relate to person-centered care.

Brooke Hallowell

Sure, the overarching goal is to provide learners with foundational, verifiable knowledge that's critical for providing person-centered care. Person-centered care is a universal and global need for people who have aphasia, and those who are important in their lives. The Life Participation Approach is fundamental to this wish that clinicians worldwide have for people with aphasia. That's increased participation in life regardless of race, ethnicity, gender, gender expression, national origin, geographic location, religious or other beliefs—regardless of any individual differences.

This course is the first in a series. The knowledge course consists of eight online, self-paced interactive modules, each of which contains three specific learning objectives. The knowledge course is a standardized way that clinicians—from novices to experienced clinicians—can be formally recognized as a Life Participation Approach professional. When a person successfully completes the course, they earn an eBadge, a certificate, and an optional 2.5 continuing education credits for those who are members of the American Speech Language Hearing Association. 

Next year, Aphasia Access will release the second in the series: the practice course. That course will build on the fundamentals of the knowledge course, passing that course will lead to the award of a second badge focused on implementation strategies across care settings. Every course module is designed to provide practical suggestions, graphics, dynamic video clips, and interactive and reflective activities to help key concepts come alive.

Lyssa Rome

Tell us a little bit more about the content team. Who worked on this badge project?

Melinda Corwin

This is Melinda and it's been an honor to serve as the content team manager for the project. For the knowledge course we had eight members on our team. Our lead author is Nina Simmons-Mackie, who's a professor emeritus at Southeastern Louisiana University. Of course, Brooke Hallowell, who as you said, is professor and dean of health sciences at Springfield College. Brooke also secured a grant to help with funding portions of this project and we could not have done it without her.

And our other team members include Katarina Haley, who is a professor at the University of North Carolina at Chapel Hill, and she directs the UNC Center for Aphasia and Related Disorders. Mary Hildebrand is a recently retired associate professor and program director of the occupational therapy department at Massachusetts General Hospital or MGH Institute of Health Professions. Jacqueline Laures-Gore is an associate professor of communication sciences and disorders at Georgia State University. We have Marjorie Nicholas, who's the chair of the communication sciences and disorders department at MGH Institute of Health Professions in Boston. And last but not least, our project manager Kathryn Shelley. She is co-founder and current grants director of the Aphasia Center of West Texas, and she's also a former president of Aphasia Access, and this course would not be possible without Kathryn’s guidance.

Lyssa Rome

Tell us a little bit more about what the benefits are of having this eBadge or taking this course.

Brooke Hallowell

Sure, this is Brooke. The badge is going to convey to others that the participant has a firm foundation of person-centered care, which is, as we know, at the heart of the life participation approach. So benefits include delivering equitable, person-centered care through collaborative goal setting and intervention, improving success for people with aphasia, and those who care about them and helping specific care settings meet communication access mandates.

When an eBadge is displayed in an email signature, or on social media, there'll be a clickable link. And that will help employers, or colleagues, or the people that we serve, even friends and family, link to a full description of what it means to have earned that eBadge.

Lyssa Rome

Great. Many of the professionals who are involved in Aphasia Access are experts in the life participation approach. So why would they want to take this course to document their knowledge?

Melinda Corwin

This is Melinda. Well, by devoting personal time, energy, and resources to earn an eBadge, it’s an efficient way to let others know that we share a common goal to provide patient-centered care across the continuum of care. And regardless of what setting a particular professional is in, whether they're in an acute care hospital, inpatient rehabilitation, outpatient rehab, home health, or community-level aphasia program, or group, these eBadge holders will be able to identify each other.

I'm a university professor and director of an aphasia community outreach program. I've been trying to teach and use the Life Participation Approach for several years, and I've wanted to spread the word with other speech language pathologists. So by adding this symbol to my email signature, I hope that colleagues will click on the eBadge and see what I've been up to. 

My decision to display the eBadge is my way to help make system change possible, I envision a day in which all healthcare providers will aspire to provide patient-centered care, essentially from the ambulance ride to the emergency center, all the way to the person's return to home and community.

Lyssa Rome

The benefits of this seem really clear. But will this eBadge or certificate be required for a clinician to to employ a person-centered or life participation approach to aphasia? Brooke?

Brooke Hallowell

Oh, no, definitely not. I have to chime in on that. We know that many clinicians are deeply engaged in this approach. And many have adhered to this approach for years and in ways that may not have been labeled expressly as life participation approach. Still, based on gaps that we know exists in our current healthcare and community settings, we hope that the eBadge will really help clinicians showcase their knowledge to employers and peers and the people they serve. Engaging in the course itself can provide support for students and clinicians who want to consider life participation constructs, perhaps more deeply or in new ways. And as Melinda was just intimating, it's also a means of confirming shared values about life participation amongst us.

Lyssa Rome

So when people have completed this course, how is that displayed as an eBadge? Melinda, maybe you can take that one?

Melinda Corwin

Yes. So it'll be in the person's email signature line, if they choose to place it there. And the eBadge is from a company called Credly, which enables anyone to click on the badge icon and be taken to a website that explains exactly what training the person completed to earn that eBadge.

Brooke Hallowell

Yeah, and it's so easy to register for the course, just go to the Aphasia Access website. That's www.aphasiaaccess.org. From there, you'll see the link to the knowledge course on the homepage. And that will take you to our new Aphasia Access Academy, which is the new home for all of our educational experiences. There is a cost. The cost for Aphasia Access members is $129. And for non-members, it's $179. 

And if you're not already an Aphasia Access member, your enrollment in the course includes a one year, first-time membership. So it's really a wonderful way to experience so many benefits of our Aphasia Access membership and network. We have our Brag and Steal events, the distinguished lecture series, shared free resources, there's a discount registration for the Leadership Summit, and there are also on-demand pre-recorded webinars. So all of that comes along with that membership. 

Lyssa Rome

Well, I'm really excited about this course. And I appreciate your sharing more details about it. And I'm wondering if there are any last thoughts that you'd like to share with our listeners?

Brooke Hallowell

Yeah, this is Brooke, I would just I've been reflecting as we've had this conversation today about how amazing it was to work with this collaborative team in developing the course. You know, I think all of us who have been involved in this from the beginning felt like we were already expert in the life participation approach. There isn't that much more to learn. But in fact, there was a tremendous amount of dynamic discussion, argumentation, passionate discussion about the various aspects of the life participation and how to portray it, how to talk about it, and what terms to use and not use. So I feel like I grew tremendously from the process of the course development. And I think a lot of that, I certainly hope that a lot of that comes out to people who participate in the course. So even if you think you're already expert in it, I'd still recommend that you give it a try for all the reasons that we talked about, and including that there's always more for all of us to learn about this approach.

Lyssa Rome

So true. Brooke Hallowell and Melinda Corwin, thank you for being our guests on this podcast. For more information on Aphasia Access and to access our growing library of materials, go to www.aphasiaaccess.org. For a more user-friendly experience, members can sign up for the Aphasia Access Academy, which is free and provides resources searchable by topic or author. If you have an idea for a future podcast series topic, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access. 

References and Resources 

http://www.aphasiaaccessacademy.org/

 www.AphasiaAccess.org/knowledgebadge/ 

Welcome to this edition of Aphasia Access Conversations, a series of conversations about topics in aphasia that focus on the LPAA model. My name is Janet Patterson, and I am a Research Speech Language Pathologist at the VA Northern California Health Care System in Martinez, California. These Show Notes follow the conversation between Dr. Papathanasiou and myself, but are not an exact transcript.

Dr. Ilias Papathanasiou is a Professor of Speech and Language Therapy at the Department of Speech and Language Therapy, University of Patras, and a Research Associate at the Voice and Swallowing Clinic, the First ENT Clinic of the Medical School of the National Kapodistrian University of Athens Greece. He is a Fellow of the American Speech-Language-Hearing Association and has received numerous awards and recognition for his tireless efforts on behalf of aphasia awareness and rehabilitation research in the international community.

 In today’s episode you will hear about:

1. considering LPAA values across social, cultural and international norms,
2. increasing aphasia awareness through actions in the local community,
3. mentoring speech-language pathologists who are learning about aphasia and LPAA in countries initiating aphasia rehabilitation services.

Dr. Janet Patterson: As Ilias and I start this podcast, I want to give you a quick reminder that this year we are sharing episodes that highlight at least one of the gap areas in aphasia care identified in the Aphasia Access, State of Aphasia report, authored by Dr. Nina Simmons-Mackie. For more information on this report, check out Podversations episode # 62 with Dr. Liz Hoover, as she describes these 10 gap areas or go to the Aphasia Access website. This episode with Dr. Papathanasiou focuses on gap area number seven, insufficient or absent communication access for people with aphasia or other communication disorders, and gap area 10, failure to address family and caregiver needs including information, support, counseling, and communication training. I hope our conversation today sheds additional light on these gap areas. 

With that introduction, I would like to extend a warm welcome to my friend and noted aphasiologist, Dr. Ilias Papathanasiou. Welcome Ilias and thank you for joining me today on Aphasia Access Podversations.

Dr. Ilias Papathanasiou: Thank you very much for this kind invitation. I'm thrilled to be with you and speak about aphasia from a rather international perspective. As you know, I have been trained in UK, I work in Greece, and have been active in many places around the world and working with developing countries, for people with aphasia.

Janet: Ilias, I'm just thrilled to have you here, and as a side note to our listeners, Ilias and I have already been talking for about an hour sharing wonderful stories about aphasia and international aphasia. Sadly, most of that won't be caught on this particular tape, but I hope a good bit of it will, because Ilias, you are a fount of information, not only about aphasia, but also about aphasia and the international community. Let me start by saying that our listeners, Ilias, are likely very familiar with the LPAA model, which as we all know, places the person with aphasia at the center of decision-making, to support them in achieving their real-life goals and reduce the adverse consequence of aphasia. How do you think social and cultural norms play a role in understanding the LPAA model?

Ilias: This is a very interesting question, which we'll have to answer. But first of all, I think we have to start with what is aphasia and how the implications of aphasia start in the community. I will say, aphasia is a language impairment, first of all, which is related from the focal lesion, which has, of course, great effects on the person with aphasia, on the quality of life, on the social network and the person, on the making friendships, on how the person functions, and the everyday environment. Now, how the person functions in the everyday environment, is related to many, many social norms. I have been working for 15 years in UK and then back to Greece. And I think that's changed my perspective. What is the social role? What the social model can offer in aphasia, because we have two different societies so they believe there are too many different societies around the world which can see aphasia as a different perspective. Taking the example from Greece, I think Greece has got a much-closed family network and supportive network comparing with other developing countries. I mean, the traditional Greece accepted that people will live with or very near their children, will have family nearby, they have their friends nearby, and they will try to - the family - to take the leadership support of the person with aphasia. This is something which might be a bit different with the USA. So in this way, the decision relies on the person and their LPAA approach of getting together and having a chat, which is not what it is for me. It is totally different, it is different in that there you have to help the participation for these people. From this perspective, I will say that life participation approach, if you take a very more wide perspective, is how we take behavior. How we take behaviors doing therapy, not only to the linguistic background because we have to start from there, you know, it's a language impairment, but also to changing behaviors of the people surrounding, to the society, and even to the government policy some time. And there's not only you know, intervening to the benefit to the person and facilitated the person which of course is correct, it's not only that. I will bring the examples. How many hospitals around the world are aphasia friendly? How many documents used by the government are aphasia friendly? And they think this access to solve this information is restricted to the people with aphasia. That is not only in USA, but I think is around the world and even you know, in different parts of the world. Some other movements of people with special skills, for example, people with visual impairment, or hearing impairment, they have been around much longer than the people with aphasia, and perhaps their network, their lobby has achieved much more changes on their policy or in the government. But for people with aphasia, this has not been the case as yet. I think this is something which can work because life participation has to be multi-directional. It is not only to change. The direction of a life participation approach, as I have to say, is a market direction, is multimodal. It has to start even from changing the attitude of the person with aphasia, changing the attitudes of the people surrounding aphasia. Telling you that you are of the society in which they move. Perhaps look at the activities which there are. But most important, changing also the government issues, the policy issues, so to make the environment to enable the person with aphasia to participate. It is very different that in Greece, perhaps, we do not have this approach as you expect in USA. Because as I said in the beginning, there is very close family network, which take that role quite importantly, and there are cases that the family will take out the person, because their close family relations, the person will continue to participate in everyday activities with the family, and perhaps helping them to be as active in the social roles as they were before.

Janet: That makes a lot of sense. You really need to think about the LPAA model with respect to the culture where a person with aphasia lives and where their families are. Let me ask you also, Ilias, in Greece, where you live and practice, how do persons with aphasia participate in speech-language treatment, and you've talked about there isn't really a practice model like LPAA, but it's more of folding the person with aphasia into the family. How do people with aphasia participate in speech-language pathology, and then move into the family?

Ilias: Speech-language pathology in Greece is very new. So, some of the public hospitals do not have a speech pathologist, yet. The first graduates from the Greek programs is about 20 years ago. It's really new and most of them have been focused on pediatrics. The rehabilitation of adults and especially with aphasia is very new in Greece. Also now we have started having some rehabilitation centers. People with aphasia are facing rehabilitation on the acute states in the hospitals, people will stay there for three or four days, having the medical checkup, and then move to a rehab unit. In the rehab unit, which will stay for two or three months, they will have more impairment-based one to one therapy on a daily basis. And then, but surrounding them at the rehabilitation center, is always the family member, which will be visit them daily, taking them to activities and whatever. And then in most of the cases the person will move back to the family. They might continue rehabilitation with an outpatient, private speech therapist, which the family supports at home. This setup will help them integrate within the family network. And usually, you know, people are still looking after, say, if they are married and live as a couple, the woman or the man will look after them, take them out to activities that simply would come around, and help, and take them to the different activities and everyday events, helping them to go out and socialize within the family network. We are still in the network that people are visiting each other, you know, the social events and the family events very often, which is quite important. The person still carries on the routine, and there is the physical disability that might restrict the person to go out, but the family will find a way to communicate and have some activities of what they want to do. And usually, I will say, that the integration after is more related to the family. Now, that can happen, I will say about 70%, 75% to 80% of the cases. Still there will be cases with no family and no support or whatever. In that case, there will be some nursing homes. They're very limited, the nursing homes. Someone would go to a nursing home if they are totally dependent on physical abilities, like they cannot walk, not take food and tube fed or whatever. The rest will be with supports in the family. 

On the other hand, what has happened in the last years is that people pay privately, a carer to be with the person with aphasia, or an elderly person. Most likely the carer be an immigrant from another country and perhaps they do not speak the language. From that perspective, the family will go in and help this person. And that's how it helps. You have to look at what is a norm for an elderly person with aphasia. Not another person with aphasia, but what is known for an elderly patient in Greece. Say if someone retired, then what she likes to do usually in Greece, is to be close to the family and see the grandchildren, to be close to do some activities. Some of them they might have a summer house with they go and spend some time with the grandchildren there. So again, for a person without aphasia the activities will be surrounded the family. This continues to exit. So, if someone with aphasia has the grandchildren coming to his house and play, and he wants them, that will be a quality of life for him, to see them and play and communicate. This is very nice because this will give him a motive to do things for himself. But also, the kids will be aware of what is aphasia, and what happened, and that will increase in some ways awareness.

Janet: It sounds like there is a lot of responsibility the family members assume for integrating the person with aphasia into the daily activities and their daily roles, and the fun and the work of family life.

Ilias: This is happening in all aspects. The elderly people stay with the family, stay connected. You know, I will not think that Greek person will leave the parents away from them. It's like you know, they will help and will support them. They might not live together but there will be close family support

Janet: Ilias, you work in a university clinic. At that clinic how do you implement the ideas of client- centered practice or LPAA in your work and your work with students,

Ilias: I don't work directly with aphasia at the university clinic, I work on the voice and swallowing clinic. I teach about aphasia with my students. What I say to them is give them is examples from every day. Usually in my classes there is discussion of the psycholinguistic, cognitive neuro model. And also, there are different lectures of putting them into their functional or community participation approach with aphasia. There are no projects in Greece, like clubs with people with aphasia and community settings where they can go. And from one perspective, I'm not sure if we need that. First is from the family, from the personal view. You don't take the people who have aphasia and put them in another place with people with aphasia, to interact only among them. The point is to integrate them in the community activities and not to you know, go from the house to another room because they will meet another 10 people, unless there are community activities for them to do.  The community activities surrounding it are doing the things which you can do before. What I tried to do with my students is first to teach them to find out what an elderly person needs; how the elderly person communicates. It is very common in Greece to have the coffee shops where people go and have a coffee and play cards. I said to them, go and play cards with your grandfather to see how he communicates, to see what he feels, to see what he needs. If you learn to play cards with your grandfather and your grandparents, you will learn to communicate with a person with an aphasia, because really you have to approach the level and the needs of that person. That is my philosophy with my students - go interact with the people on different events and not be so centered to yourself, and what you think. Go and find out what they want. So we tried to create activities within the class, which we will look on these different perspectives. There is no settings like nursing homes, which they have got people with aphasia in Greece, because people are living in their own homes, about 80% - 90%. The family is there. What we mean by the life participation approach is going back to the family life, going back to the community, because that is the most important to the person’s needs and he wants to be close with a family.

Janet: As you're doing that, and teaching your students and role modeling, I imagine you might find some obstacles to actually implementing client-centered care. What obstacles do speech pathologists in Greece face? How do you and your colleagues work to mitigate those obstacles and implement the care principles similar to those of LPAA, when you're working with the patients with aphasia,

Janet: First, you know, there are some physical obstacles. For example, if you live in a big city like Athens, in a block of flats, not all of them are accessible. For people to get out of the house is not always very easy. That is an issue, in general and is not like the United States, where you have homes on one level; people can park outside their houses and get in and out. Here it is totally different. It is like having access in place in New York City with steps to go up in one of these big townhouses. It is not easy for a person with aphasia. Think about it, if you live in a townhouse in New York with ten steps to climb and go in, a person with aphasia cannot do that easily; with a stroke, not with aphasia. This is a similar situation in most places in Greece. Even the new buildings have to have access for people with disabilities, but still, we have flats from the 1960s and 1970s, who do not have access. There are physical obstacles for people to come out and get involved. 

Then the other big thing which you have to change is the awareness of aphasia. For people to understand that this person does not have intelligence problem, and this is just a communication problem. And that the people, you know, have the executive function, to function and to communicate. People who do not have that in mind, you have to change this way of thinking. A few years back in Greece, people were saying, ”Oh, he had a stroke, now he lost his mind.” I believe this is nothing new, what's happened in Greece, this happened in other parts of the world, the thinking that aphasia affected the intelligence of the person. We tried to change that, to say that aphasia is something which you have. You lost the ability to use your language and to communicate, but still you are the same person, nothing has changed. You still have got your thoughts, your feelings, your loved ones, this has not changed. And as I told you, there is also some natural recovery in different ways. The example, which I gave you before, when we had the chat, when I saw my person from the village where I was born in Greece, when I was living in UK, there was no service for aphasia in Greece. He never had therapy and he was someone with Broca’s Aphasia and severe apraxia. His wife was taking him every day to the coffee shop, which he used to do, to see the same people and watching the people play cards, and he has found the natural way of communicating. That I think, is very important because he kept the activities. He kept the roles and that is the social model of the life of the patient. It does not mean life participation is to go to a club to meet other people with aphasia. Life participation means to return back to what you want, and what is your everyday activities, your family, and what it is important to you to do. That's what I tried to do with my students, tried to put them into this modality of thinking that you have to take into account what the person of aphasia is, and what the environment they live. It says a person should return to these roles are soon as they can.

Janet: Those are wise words very, very wise words Ilias, I think, especially the idea about going into the coffee shop. That makes perfect sense is a way of beginning to communicate and establish a pattern between the two of you for communication.

Ilias: Yeah, but this person did develop a pattern of communication with no intervention. You will say then, what would a speech-language pathologist do in this situation. And I will say, the speech-language pathologist will go there from the beginning, might work on the linguistic impairment at the same time, show his wife and facilitate all these changes in the life they knew, and perhaps, if she found a way, two months or three months down the line, to take him to the coffee shop. She should start doing that earlier, taking him out to everyday activities which he used to do before. Sometimes, you know, we have to think we are overreacting. Perhaps we have things in our mind, the therapist, which we say, “oh, you should do that, you should do that, you should do that.” The person really is not aware of what we're suggesting, you know, what I mean? We're very motivated for people to do more things and more things and get involved. But actually, the person, that is not what you want. Some simple things in life can make these changes.

Janet: Exactly. 

Ilias: Give them this space to make the choices of what is meaningful to them. The thing, you have to take that into account, and that's what I say from the beginning. The behavior changes, not only the linguistic skills and on the family, but also to us. How we're able to understand as clinicians where to stop participating in the social interaction with them. Some people are lazy, some have got a different network. It's not all you know, what we want to push them to do?

Janet: You're exactly right, because you may have wonderful ideas as a speech-language pathologist, but they don't match with what the person with aphasia would like to do. You must respect their ideas and their wishes.

Ilias: It is not only respect them, because we do, I want to believe that we respect the wishes. We have to teach ourselves to take that into account when we give these wonderful ideas. It is a skill not to push the people, you know, not to push people too far. You have to give them the space, and I think that is quite important, too.

Janet: Let me take this conversation in a slightly different direction. What you've been talking about a lot is really awareness and support and understanding the culture of where a person and how a person with aphasia lives, and how their family lives. But let me take you in a slightly different direction by asking about the papers that you have published on several topics helping people understand aphasia. I'm thinking mostly about your papers on public awareness of aphasia and assessing quality of life for persons with aphasia. Will you tell us a little bit about this line of research that you've been doing, and how you see it informing clinical practice for speech-language pathologists who believe in the LPAA model and patient-centered care

Ilias: Now, you are speaking with someone who has got a very wide background in research. I have to say that my first research and my Ph.D. was about neuroplasticity and connectivity. I did that back in London at the Institute of Neurology, with TMS and connectivity in the middle 1990s, before all this idea about plasticity and connectivity came out.  It was very lovely to work with them. At that point, this was not very popular. I don't know why, but now it is. Perhaps people are not aware about all this work I have done with connectivity in neuroplasticity, back in the 1990s, even though it is published. But it's written in different way. 

But coming back to Greece, I have to say, you have to start from a different perspective. Why is that? Because I come from a country who has totally different needs, comparing with UK who have more organized research. I will take that as a guidance or an advice to people who are going back to their countries of developing. There are countries who do not have, you know, the research programs you have in USA, and that are still developing countries. When I came back to Greece, I had to start from somewhere. The things which I needed were tests to evaluate aphasia, I need to see what the public knows about aphasia, and even what are some networks about aphasia, I need to start from epidemiological data. Because unless you work on an epidemiological data, you will not be able to go to the government and say the policies, how many people with aphasia exist and what changed. At the same time, Katerina Hilari in UK was doing the work on quality of life. We did a project with her here in Greece on the validation of the quality-of-life approach, which Katerina has developed, and has been used in Greece as well. With Katerina, we developed the first efficacy study in the Greek language, because we have to prove that the linguistic difference makes a difference. We took the semantic feature analysis in a different perspective, which is more approachable to the Greek. It will do the semantic analysis work, which has been published. 

So really, coming back from here, you have to start from the basic and it is important for the local community in the country because you got to start. That's why I have the work which changed my direction some ways. We might speak about different approaches to aphasia in developing countries, when you go to the small countries, this is totally different. At the same time, because people have been starting my position in other countries, I have been invited to help them out in a different perspective. I have been working with Slovenia, for example, helping them to develop the test, and they are doing education about aphasia. Now I have contact with people from Middle East and they want the similar. Through my work with the International Association of Language and Communication Sciences and Disorders, IALP, as part of the Education Committee, we have a mentorship program for clinicians working with aphasia, something which perhaps you don't know. IALP and Tavistock trust, have put together a program and aphasia committee and we are mentors of clinicians in the developing countries. Right now, the IALP program has about twenty clinicians being mentored around the world. I have someone in Vietnam, which is very interesting. And the same time, from my role as the Education Committee, I have been involved in many of these places, which they asked you know, how to develop materials, how to do all this work to change the life of communication disorders. I think aphasia is part of that, because I have all that experience. I think you have to start off at that point with the research, you know, develop the tests, the materials to assess, and then go to the different aspects which we need of recovery. Taking in the national perspective, regarding tests, I will say, you do not have to translate the test, you don't translate the test, you adopt the test. And sometimes it's not possible to do that. Even some of the notes of the quality of life which you have, or the social approach, which you have in the case of the life participation approach with what we have talked before, might not be appropriate in a different country. But you have to think the principles behind that.

Janet: You talk about awareness, and it makes me think that it really is foundational to so much of what we think about with LPAA. You're talking about awareness of aphasia in government areas, in policy areas, in writing documents, in how families engage with people with aphasia, how the shopkeepers around the area engage with people with aphasia. Awareness is important and those of us who are enmeshed in aphasia, we just may take it for granted that everybody knows what aphasia is, or everybody knows how to talk with the person with aphasia, and that's just not so. You're telling me, and I believe you're right, that building awareness is so important to the foundation of building a successful aphasia culture, whether it's the rehabilitation culture, or the family culture, or the government culture,

Ilias: I want to say aphasia-friendly society, instead of culture.

Janet: That's a great way to think about it – aphasia-friendly society, larger than just the speech language-pathology community.

Ilias: Larger than that. With the Bruce Willis and all the issues these days about aphasia, it's a great opportunity to go out and speak what is aphasia. People now might know the word aphasia, but what actually is the effect on life and how we'll live with that. I don't think that people are aware of that, unless it is something they have experienced from their own household. I think we have to get involved, taking the opportunities not only to go to the TV channels or going to the media and speaking about it, using this opportunity to get involved to the changes in the society. I think that is what will be the opportunity. The media help up to one level, but speaking to the media, they will know what is aphasia but that will not change that of the society 100%. People have to be in phase with a person with aphasia, and they have to say, to interact, with a person with aphasia to understand what it is. In the smaller communities, that might be easier, because each knows each other, and that will be much easier. That is why Greece, who is a smaller community, this small village, in a small town is more acceptable, comparing where the neighborhood network and the neighborhood community is still very close, comparing with big cities, which we don't know who lives next to you. That helps people understand what's going on and helping the person with aphasia. We have to start from the local people instead of going to the media. They're here, and you go out and take the people with aphasia to breakfast. I say, going to the coffee shop, that will be another 15 people there, these people will know what happend and speak with them. These 15 people will go to a different level. This is how you spread the word of aphasia. It is not always that the media will do the best thing. That's what I think.

Janet: I think you're right; it takes many perspectives. And people working from many points of view to really build this foundation and the media, especially with the attention it's given in the last couple of weeks about Bruce Willis. The media certainly plays a point, but you're right, not the most important point or not the only point. We are the advocates, and we are the ones who need to lay the foundation for awareness,

Ilias: I think we have to go a step further. Like, yes, the media brought this case up, go to the governor, go to the policies, insist that there is a need there. It is the media in different ways. Go and speak with the politicians, the lobby. I don't think this has happened. 

Janet: It happens in some places, but we can certainly do more. Which leads me actually to my next question. So in addition to being a leader in aphasia, in your country of Greece, Ilias, you also have a large international presence in the aphasia community. You've alluded to that, and that presence in the discussion today. But I want to take you a little bit further into that by asking, how do you see the LPAA model influencing aphasia services throughout the international community? I know you've already talked about it with respect to your Greek community, but what are you thinking about, or what are you speculating about with the larger international community?

Ilias: I think that we will be involved in the very international community, but we have to take into account their special social network, which every community has got, which is totally different. Perhaps the life participation approach will be different from one community to another globally, from one country to another. Each community has got different norms, so it has to be adopted to the different norms of the community. How that will happen, I think, is local people will take the history of it and try to disseminate, and they will adopt it locally. It has to be adopted locally, and how it will be applied with different societal structures, that also will be very interesting to see. As I say, working with these developing countries, I will be very interested to see how that will evolve, and how they will respect. Some of the countries think that aphasia therapy is only linguistic because they have different norms, or I don't know if there are some countries which think about intelligence. There must be. So it's a lot of education which has to happen in all these countries to do all this information. 

Janet: That's a good perspective and again, brings us back to the work we need to do in terms of aphasia awareness, talking with our colleagues internationally, and connecting with people with aphasia and their families.

Ilias: It's very important because I think the world that will change as well, because the world is getting smaller. I think communication between different countries at different perspectives, now, it's much easier. Look at the different ways which this podcast works. This can have access to different people around the world, they can speak, have communication, have Zoom meeting. It's much easier to communicate and have access to different information. I think that will help to change. But on the other hand, you don't know how ready a culture is to accept this approach, because some technology is going too fast for some countries and cannot be persuaded to go faster in some modalities. I think it's much easier than it used to be 20 years ago to have access to all this information directly. I think this is a positive sign for more countries to approach to life participation approach.

Janet: Certainly, we've had some podcasts on this topic, and people are thinking about how do you connect, to do a group therapy for people with aphasia, using technology or Zoom or some other platform? Certainly, that is exciting and if it helps persons with aphasia, that's a great thing.

Ilias: Can we have a podcast with people with aphasia speaking from different countries?

Janet: I think that would be a terrific idea. We've had one podcast with some people with aphasia speaking, but they have been in the same location. We have had not podcasts, but I've been part of activities where people in different parts of the United States have been talking together on Zoom. I think that's an excellent idea, people with aphasia from different parts of the world gathering together to talk about their aphasia, I'm going to propose that topic to our team,

Ilias: I'm happy to facilitate that.

Janet: Excellent, I'll sign you up Ilias. As we bring this interview to a close, Ilias, I wonder if you have some pearls of wisdom or lessons learned about LPAA and aphasia services in Greece and around the world that you will share with our listeners.

Ilias: I will say first of all, listen to the person. Just note what the person wants. That is the most important thing. A person with aphasia, as Audrey Holland said, is able to communicate even if he has got the linguistic impairment. So as clinicians, as family, try to find the strong points of this person, and make the most of it, to make him an active member of the society. According to what he wants, she wants, do not impose things on the person, give them the opportunity. I think that is applied everywhere. With the different societal rules, people need different things. Just listen to this person, what he wants, and just use the stroke skills which they have, and facilitate to be an active member of the society. Don't ignore the linguistic impairment, change the behavior allowed at all different levels that we have discussed so far. That's what I want to give out of this perspective.

Janet: I think those very important pearls of wisdom, especially the idea of listening to the patient. It's not huge, it doesn't take a lot of effort, but it's so very, very important because it can form the foundation of the relationship that we have and the success that the person with aphasia can feel. Thank you for those, I will take them to heart and take them into our minds as well. I do appreciate Ilias, your insights and your dedication to serving people with communication disorders. Thank you very much for talking to me today. 

This is Janet Patterson, and I am speaking from the VA in Northern California. Along with Aphasia Access, I would like to thank my guest, Dr. Ilias Papathanasiou, for sharing his knowledge about aphasia and his experiences in the international aphasia community. I am grateful to you, Ilias, for reflecting on LPAA and international aphasia services, and sharing your thoughts with us today.

You can find references and links in the Show Notes from today's podcast interview with Ilias Papathanasiou at Aphasia Access under the Resource tab on the homepage. On behalf of Aphasia Access, we thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access, and to access our growing library of materials, please go to www.aphasiaaccess.org. If you have an idea for a future podcast topic, please email us at info@aphasiaaccess.org Thank you again for your ongoing support of Aphasia Access.

References

Papathanasiou, I. (Ed.). (2000). Acquired Neurogenic Communication Disorders: A Clinical Perspective. London: Whurr Publishers. 

Papathanasiou, I. & De Bleser, R. (Eds.).  2010 (2^nd ed.). The Sciences of Aphasia: From Therapy to Theory. London: Emerald Group Publishing.

Papathanasiou, I., Coppens, P. & Potagas, C. (Eds.).  2022 (3rd ed.). Aphasia and Related Neurogenic Communication Disorders, Burlington MA: Jones & Bartlett Publishers.

International Association of Communication Sciences and Disorders.  https://ialpasoc.info 

Tavistock Trust for Aphasia. https://aphasiatavistocktrust.org/ 

Ilias Papathaniou@facebook.com

Interviewer

I’m Ellen Bernstein-Ellis, Program Specialist and Clinical Supervisor for the Aphasia Treatment Program at Cal State East Bay and a member of the Aphasia Access Podcast Working Group. AA's strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. 

Today, I have the honor of speaking with Dr. Jaime Lee who was selected as a 2022 Tavistock Distinguished Scholar. We'll discuss her research interests and do a deeper five into her work involving the study of texting behaviors of individuals with aphasia and her efforts to develop an outcome measure that looks at success at the transactional level of message exchange. 

As we frame our podcast episodes in terms of the Gap Areas identified in the 2017 Aphasia Access State of Aphasia  Report by Nina Simmons-Mackie, today's episode best addresses Gap areas: 

5. Insufficient attention to life participation across the continuum of care; 

6. Insufficient training and protocols or guidelines to aid implementation of participation-oriented intervention across the continuum of care; 

7. Insufficient or absent communication access for people with aphasia or other communication barriers 

For more information about the Gap areas, you can listen to episode #62 with Dr. Liz Hoover or go to the Aphasia Access website.

Guest bio

 Jaime Lee is an Associate Professor in the department of Communication Sciences and Disorders at James Madison University. Jaime’s clinical experience goes back nearly 20 years when she worked as an inpatient rehab SLP at the Rehabilitation Institute of Chicago (now Shirley Ryan Ability Lab). She later worked for several years as a Research SLP in Leora Cherney’s Center for Aphasia Research and Treatment. Jaime earned her PhD at the University of Oregon, where she studied with McKay Sohlberg. Her research interests have included evaluating computer-delivered treatments to improve language skills in aphasia, including script training and ORLA, examining facilitation of aphasia groups, and most recently, exploring text messaging to improve participation, social connection and quality of life in IWA.

Listener Take-aways

In today’s episode you will:

• Learn about why texting might be a beneficial communication mode for IwA
• Explore the reasons it’s important to consider the communication partner in the texting dyad
• Find out more about measures examining texting behaviors, like the Texting Transactional Success (TTS) tool.
• Consider how Conversational Analysis may be helpful in understanding texting interactions

Edited show notes

Ellen Bernstein-Ellis

Jaime, welcome to the podcast today. I'm so excited that we finally get to talk to you. And I want to offer a shout out because you mentioned two mentors and colleagues who I just value so much, McKay Solberg and Leora Cherney, and I'm so excited that you've also had them as mentors.

Jaime Lee  02:44

Thanks, Ellen. It's really great to talk with you today. And speaking of shout outs, I feel like I have to give you a shout out because I was so excited to meet you earlier this summer at IARC. We met at a breakfast. And it was exciting because I got to tell you that I assigned to my students your efficacy of aphasia group paper, so it was really fun to finally meet you in person.

Ellen Bernstein-Ellis  03:11

Thank you, that is the paper that Roberta Elman was first author on. I was really proud to be part of that.  

I was excited to get to come over and congratulate you at the breakfast on your Tavistock award. I think it's very, very deserving. And I'm excited today that we can explore your work and get to know each other better. And I'm just going to start with this question about the Tavistock. Can you share with our listeners what you think the benefits of the Tavistock Distinguished Scholar Award will be to your work?

Jaime Lee  03:43

Sure, I think first off being selected as a Tavistock Distinguished Scholar has been really validating of my work in terms of research and scholarship. It's made me feel like I'm on the right track. And at least maybe I'm asking the right kinds of questions. And it's also really meaningful to receive an award that recognizes my teaching and impact on students. And I was thinking about this and a conversation that I had with my PhD mentor McKay Solberg. And it was early into my PhD when we were talking about the impact of teaching and how important it was, where she had said that when we work as a clinician, we're working directly with clients and patients were hopefully able to have a really positive meaningful impact. But when we teach, and we train the next generation of clinicians, you know, we have this even greater impact on all of the people that our students will eventually work with throughout their career. And so that's just huge. 

Ellen Bernstein-Ellis  04:51

It really is huge. And I have to say I went to grad school with McKay and that sounds like something she would say, absolutely, her value of teaching. 

I just want to do a quick shout out to Aphasia Access, because I think they also recognize and value the importance of teaching. They have shown that commitment by their LPAA curricular modules that they developed and make accessible to Aphasia Access members, so people can bring content right into their coursework, which is helpful because it takes so much time to prepare these materials. So, if you haven't heard of these curricular modules yet, please go to the website and check them out. 

So yes, I'm so glad that you feel your work is validated. It’s really important to validate our young researchers.  I think there's an opportunity to expand who you meet during this year. Is that true?

Jaime Lee  05:40

That is already true. This honor has already led to growing connections with other aphasia scholars and getting more involved with Aphasia Access. I'm excited to share that I'll be chairing next year's 2023 Aphasia Access Leadership Summit together with colleagues Esther Kim and Gretchen Szabo. We're really enthusiastic about putting together a meaningful and inspiring program. I am just really grateful for the opportunity to have a leadership role in the conference.

Ellen Bernstein-Ellis  06:17

Wow, that's a fantastic team. And I, again, will encourage our listeners, if you've never been to a Aphasia Access  Leadership Summit, it is worth going to and everybody is welcomed. We've had several podcast guests who have said that it has been a game changer for them-- their first attendance at the Leadership Summit. So, we'll be hearing more about that. 

Well, I want to start our interview today by laying some foundation for your work with texting and developing some outcome measures for treatment that captures transactional exchange in individuals with aphasia. And let me just ask what piqued your interest in this area?

Jaime Lee  06:57

Yeah, thanks. Well, before I got interested specifically, in texting, I had this amazing opportunity to work as a research SLP with Leora Cherney and her Center for Aphasia Research and Treatment. And we all know Leora well for the contributions she's made to our field. At that time, she had developed ORLA, oral reading for language and aphasia, and a computerized version, and also a computerized version of aphasia scripts for script training. And these were treatments that not only improve language abilities in people with aphasia, but I really had this front row seat to seeing how her interventions really made a difference in the lives of people with aphasia, and help them reengage in the activities that they wanted to pursue-- reading for pleasure and being able to converse about topics that they want to do with their script training. So at the same time, I was gaining these really valuable research skills and understanding more about how to evaluate treatment. I was also able to start learning how to facilitate aphasia groups because Leora has this amazing aphasia community that she developed at what was then RIC. I'm just really grateful for the opportunity I had to have Leora as a mentor, and now as a collaborator. And her work really helped orient me to research questions that address the needs of people with aphasia, and to this importance of building aphasia community.

Ellen Bernstein-Ellis  08:37

Wow, that sounds like a really amazing opportunity. And I think it's wonderful that you've got to have Leora as a mentor and to develop those interests. Then look at where you're taking it now. So that's really exciting to talk about with you today.

Jaime Lee  08:54

As for the texting interest that really started after I earned my PhD and was back at the Rehab Institute, now Shirley Ryan Ability Lab, Leora was awarded a NIDILRR field initiated grant and I served as a co-investigator on this grant. It was a randomized, controlled trial, evaluating ORLA, combined with sentence level writing. 

The two arms of the trial were looking at ORLA plus writing using a handwriting modality, versus ORLA combined with electronic writing or we kind of thought about this as texting. So we call that arm T-write. And ORLA was originally designed to improve reading comprehension, but we know from some of Leora’s work that there were also these nice cross-modal language improvements, including improvements in written expression. This was a study where we really were comparing two different arms, two different writing modalities, with some secondary interest in seeing if the participants who were randomized to practice electronic writing, would those improvements potentially carry over into actual texting, and perhaps even changes in social connectedness?

Ellen Bernstein-Ellis  10:15

Those are great questions to look at. Interest in exploring texting’s role in communication has just been growing and growing since you initiated this very early study. Jaime, would you like to explain how you actually gathered data on participants texting behaviors? How did that work?

Jaime Lee  10:32

Yes. So we were very fortunate that the participants in this trial, in the T-write study, consented to have us extract and take a look at their real texting data from their mobile phones prior to starting the treatment. So, for those who consented, and everyone, I think we had 60 participants in the trial, and every single participant was open to letting us look at their texts and record them. 

We recorded a week's worth of text messages between the participant and their contacts at baseline, and then again at a follow up point after the treatment that they were assigned to. And that was so that maybe we could look for some potential changes related to participating in the treatment. So maybe we would see if they were texting more, or if they had more contacts, or maybe they might even be using some of the same sentences that were trained in the ORLA treatment. We haven't quite looked at that, the trial just finished so we haven't looked at those pre/ post data. But when my colleagues at Shirley Ryan and I started collecting these texting data, we realized there were some really interesting things to be learned from these texts. 

And there have been a couple of studies, we know Pagie Beeson's work, she did a T-CART study on texting, right? And later with her colleague, Mira Fein. So we had some texting studies, but nothing that really reported on how people with aphasia were texting in their everyday lives. 

Ellen Bernstein-Ellis  12:08

Well, Jaime, do you want to share what you learned about how individuals with aphasia texts are different from individuals without aphasia?

Jaime Lee  12:15

We saw that first, people with aphasia do text, there were messages to be recorded. I think only a couple of participants in the trial didn't have any text messages. But we took a look at the first 20 people to enroll in the trial. We actually have a paper out-- my collaborator, Laura Kinsey is the first author. This is a descriptive paper where we describe the sample, 20 people, both fluent aphasia and nonfluent aphasia, a range of ages from mid 30s up to 72. And one striking finding, but maybe not too surprising for listeners, is that the participants with aphasia in our sample texted much less frequently than neurologically healthy adults, where we compared our findings to Pew Research data on texting. And our sample, if we took an average of our 20 participants and look at their texts sent and received over a week, over the seven days, they exchanged an average of about 40 texts over the week. Adults without aphasia, send and receive 41.5 texts a day.

Ellen Bernstein-Ellis  13:36

Wow, that's quite a difference. Right? 

Jaime Lee  13:39

Yes, even knowing that younger people tend to text more frequently than older adults. Even if we look at our youngest participants in that sample who were in their mid 30s, they were sending and receiving text much less frequently than the age matched Pew data.

Ellen Bernstein-Ellis  13:56

Okay, now, I want to let our listeners know that we're going to have the citation for the Kinsey et al. article that you just mentioned in our show notes. How can we situate addressing texting as a clinical goal within the life participation approach to aphasia? 

Jaime Lee  14:14

I love this question. And it was kind of surprising from the descriptive paper, that texting activity, so how many texts participants were sending and receiving, was not correlated with overall severity of aphasia or severity of writing impairment? 

Ellen Bernstein-Ellis

I'm surprised by that. Were you? 

Jaime Lee

Yes, we thought that there would be a relationship. But in other words, having severe aphasia was not associated with texting less. And we recognize, it's dangerous to draw too many conclusions from a such a small sample. But a major takeaway, at least an aha moment for us, was that we can't make assumptions about texting behaviors based on participants’ language impairments, also based on their age, their gender. You know, in fact, our oldest participant in the sample, who was 72, was actually most active texter. He sent and received 170 texts over the week period.

Ellen Bernstein-Ellis  15:22

Wow, that does blow assumptions out of the water there, Jaime. So that's a really good reminder that this to be individualized with that person at the center? Because you don't know. 

Jaime Lee  15:32

You don’t know. Yeah. And I think it comes down to getting to know our clients and our patients, finding out if texting is important to them. And if it's something they'd like to be doing more of, or doing more effectively, and going from there. 

Ellen Bernstein-Ellis

Wow, that makes a lot of sense. 

Jaime Lee  

Yeah, of course, some people didn't text, before their stroke and don't want to text. But given how popular texting has become as a form of communication, I think there are many, many people with aphasia, who would be interested in pursuing texting as a rehab goal.

Ellen Bernstein-Ellis  16:08

Right? You really have to ask, right? 

Jaime Lee  16:11

Yes, actually, there's a story that comes to mind about a participant who was in the T-write study, who had stopped using her phone after her stroke. Her family had turned off service; she wasn't going to be making calls or texting.

Ellen Bernstein-Ellis

Well, I've seen that happen too many times. 

Jaime Lee  

And when she enrolled in the study, and she was a participant at Shirley Ryan, because we ran participants here at JMU and they ran participants in Chicago. And she was so excited. I heard from my colleagues that she went out and got a new phone so that she could use her phone to participate in the study. And then her follow up data. When we look at her real texts gathered after the study at the last assessment point, her text consists of her reaching out to all of her contacts with this new number, and saying hello, and getting in touch and in some cases, even explaining that she'd had a stroke and has aphasia. 

Ellen Bernstein-Ellis  17:13

Oh, well, that really reminds me of the value and importance of patient reported outcomes, because that may not be captured by a standardized test, per se, but man, is that impactful. Great story. Thank you for sharing that.

So well, you've done a really nice job in your 2021 paper with Cherney that’s cited in our show notes of addressing texting’s  role in popular culture and the role it's taking in terms of a communication mode. Would you explain some of the ways that conversation and texting are similar and ways that they're different?

Jaime Lee  17:45

That is a great question, Ellen and a question I have spent a lot of time reading about and thinking about. And there is a great review of research that used conversation analysis (CA) to study online interactions. This is a review paper by Joanne Meredith from 2019. And what the review tells us is that there are many of the same organizing features of face to face conversation that are also present in our online communications. So we see things like turn taking, and we see conversation and texting or apps unfold in a sequence. So what CA refers to as sequential organization.  We also see, just like in face to face conversation, there are some communication breakdowns or trouble sources in online communication. And sometimes we see the need for repair to resolve that breakdown.

Ellen Bernstein-Ellis  18:45

Yeah, Absolutely. I'm just thinking about auto corrects there for a moment.

Jaime Lee  18:51

And they can cause problems too. When the predictive text or the AutoCorrect is not what we meant to say that can cause a problem.Ellen Bernstein-Ellis  18:59

Absolutely. Those are good similarities, I get that.

Jaime Lee  19:03

I think another big similarity is just about how conversation is co-constructed. It takes place between a person and a conversation partner and in texting, we have that too. We have a texting partner, or in the case of a group text, we have multiple partners. There's definitely similarities. And another big one is that purpose, I think we use conversation ultimately, and just like we're using texting to build connection, and that's really important

Ellen Bernstein-Ellis  19:32

Yeah, I can really see all of those parallels. And there are some differences, I'm going to assume.

Jaime Lee  19:39

Okay, yes, there are some definite interesting differences in terms of the social aspects of conversation. We do a lot in person, like demonstrating agreement, or giving a compliment, or an apology, or all of these nonverbal things we do like gesture and facial expression and laughter. Those nonverbal things help convey our stance, or affiliation, or connection. But in texting, we can't see each other. Right? So we have some different tools to show our stance, to show affiliation. What we're seeing is people using emojis and Bitmojis, and GIFs, even punctuation, and things like all capitals. We've all seen the all caps and felt like someone is yelling at us over text, that definitely conveys a specific tone, right?

Ellen Bernstein-Ellis  20:34

I was just going to say emojis can be a real tool for people with aphasia, right? If the spelling is a barrier, at least they can convey something through an image. That's a real difference.

Jaime Lee  20:45

Absolutely, I think some of the problematic things that can happen and the differences with texting have to do with sequencing and timing. Because people can send multiple texts, they can take multiple turns at once. And so you can respond to multiple texts at once, or that can lead to some confusion, I think we're seeing, but texting can also be asynchronous, so it’s not necessarily expected that you would have to respond right away

Ellen Bernstein-Ellis  21:16

So maybe giving a person a little more time to collect their thoughts before they feel like they have to respond versus in a person-to-person exchange where the pressure is on? 

Jaime Lee  

Absolutely, absolutely. 

Ellen Bernstein-Ellis

Well, why might texting be a beneficial communication mode for individuals with aphasia, Jaime, because you have spelling challenges and all those other things.

Jaime Lee  21:37

Yeah, I think it comes back to what you just said, Ellen, about having more time to read a message, having more time to be able to generate a response. I know that texting and other forms of electronic communication like email, can give users with memory or language problems a way to track and reread their messages. And in some cases, people might choose to bank responses that they can use later. We know this from actually some of Bonnie Todis and McKay Sohlberg’s work looking at making email more accessible for users with cognitive impairment. So I think there are some really great tools available to people with aphasia to feel successful using texting.

Ellen Bernstein-Ellis  22:30

That's great. I think banking messages is a really important strategy that we've used before, too. 

Jaime Lee  22:37

So there's all these other built-in features, that I'm still learning about that are in some mobile phones, that individuals with aphasia can potentially take advantage of. I think some features might be difficult, but there are things like we've just talked about, like the predictive text or the autocorrect. And then again, all these nonlexical tools, like the emojis and the GIFS and being able to link to a website or attach a photograph. I think this is a real advantage to communicating through text.

Ellen Bernstein-Ellis  23:10

It lets you tell more of the story, sometimes. One of my members talks about when his spelling becomes a barrier, he just says the word and then that speech-to-text is really helpful. It's just one more support, I guess.

Jaime Lee  23:24

Yes. And we're needing to find out a little bit more about the features that people are already using, and maybe features that people don't know about, but that they would like to use like that speech-to-text. That's a great point. 

Ellen Bernstein-Ellis  23:37

Well, how did you end up wanting to study texting for more than an amount of use or accuracy? In other words, what led you to studying transaction? Maybe we can start with a definition of transaction for our listeners? 

Jaime Lee  23:51

Sure. Transaction in the context of communication is the exchange of information. So it involves understanding and expression of meaningful messages and content. And this is a definition that actually comes from Brown and Yule’s concepts of transaction and interaction and communication. So Brown, and Yule tell us that transaction again, is this exchange of content, whereas interaction pertains to the more social aspects of communication.

Ellen Bernstein-Ellis  24:26

Okay, thank you. I think that's really good place to start.

Jaime Lee  24:29

Part of the interest in transaction, first came out of that descriptive paper where we were trying to come up with systems to capture what was going on. So we were counting words that the participants texted and coding whether they were initiated or are they texts that are simple responses. We counted things they were doing, like did they use emojis or other multimedia? But we were missing this idea of how meaningful their text were and kind of what was happening in their texting exchanges. So this kind of combined with another measure we had, it was another measure in T-write really inspired by Pagie Beeson and Mira Fein’s paper where they were using some texting scripts in their study. 

We also love scripting. We wanted to just have a simple measure, a simple brief texting script that we could go back and look at. We had as part of our protocol a three turn script. And I remember we sat around and said, what would be a really common thing to text about? And we decided to make a script about making dinner plans. And so we're collecting these simple scripts. And as I'm looking at these data coming in, I'm asking myself, what's happening here? How are we going to analyze what's happening? What was important didn't seem to be spelling or grammar. What seemed most important in this texting script was how meaningful the response was. And ultimately, would the person be able to make dinner plans and go plan a dinner date with a friend. So it seemed like we needed a measure of successful transaction within texting.

Ellen Bernstein-Ellis  26:23

Jaime, I'm just going say that that reminded me of one of my very favorite papers, whereas you started out counting a lot of things that we can count, and it did give you information, like how much less people with aphasia are texting compared to people without aphasia, and I think that data is really essential. But there's a paper by Aura Kagan and colleagues about counting what counts, right, not just what we can count. And we'll put that citation and all the citations in the show notes-- you're  bringing up some wonderful literature. So I think you decided to make sure that you're counting what counts, right? In addition to what we can count. 

Jaime Lee  26:59

Yes. And I do love counting. I was trained at the University of Oregon in single case experimental design. So really, behavioral observation and counting. So I am a person who likes to count but that sounds, like counting what counts. I love that.

Ellen Bernstein-Ellis  27:13

Yeah, absolutely. In that 2021 paper, you look at the way some researchers have approached conversational analysis measures and you acknowledge Ramsberger and Rende’s 2002 work that uses sitcom retells in the partner context. And you look at the scale that Leaman and Edmonds developed to measure conversation. And again, I can refer listeners to Marion Leaman's podcast as a 2021 Tavistock distinguished scholar that discusses her work on capturing conversation treatment outcomes, but you particularly referred to Aura Kagan and colleagues’ Measurement of Participation in Conversation, the MPC. We’ll put the citation in the show notes with all the others, but could you describe how it influenced your work?

Jaime Lee  27:58

Yeah, sure. That's funny that you just brought up a paper by Aura Kagan, because I think I'll just first say how much Aura’s work on Supported Conversation for Adults with Aphasia, SCA, how influential it's been throughout my career. First as a clinician and actually interacting with people with aphasia, and then later in facilitating conversation groups and helping to train other staff on the rehab team, the nursing staff. And now, it's actually a part of my coursework that I have students take the Aphasia Institute's free eLearning module, the introduction to SCA, as part of my graduate course, and aphasia, and all of the new students coming into my lab, do that module. So they're exposed really early on to SCA.

Ellen Bernstein-Ellis  28:50

I'm just gonna say me too. We also use that as a training tool at the Aphasia Treatment Program, It’s really been a cornerstone of how we help students start to learn how to be a skilled communication partner. So I'm glad you brought that up.

Jaime Lee  29:03

Absolutely. So yes, Kagan's Measurement of Participation in Conversation (MPC), was really influential in developing our texting transactional success rating scale. And this is a measure that they created to evaluate participation and conversation. And they were looking actually both at transaction and interaction, I needed to start simply and just look at transaction first. They considered various factors. They have a person with aphasia and a partner engage in a five minute conversation. And they looked at factors like how accurately the person with aphasia was responding, whether or not they could indicate yes/no reliably, and could they repair misunderstandings or miscommunications. And then the raters made judgments on how transactional was that conversation? So, we looked at that measure and modeled our anchors for texting transactional success after their anchors. We had a different Likert scale, but we basically took this range from no successful transaction, partial transaction, to fully successful. And that was really modeled after their MPC.

Ellen Bernstein-Ellis  30:17

Wow. Thank you for describing all of that.

Jaime Lee  30:20

Yeah. Another big takeaway I'll add is that, and this really resonated with what we were hoping to capture, the scores on the MPC weren't necessarily related to traditional levels of severity. So Kagan and colleagues write that someone even with very severe aphasia, could score at the top of the range on the MPC. And I think similarly, what we feel about texting is even someone with severe writing impairments could be very successful, communicating via text message, really, depending on the tools they used, and perhaps, depending on the support they received from their texting partner.

Ellen Bernstein-Ellis  31:02

You and your colleagues develop this Texting Transaction Success tool, the TTS, right? What is the goal of this measure? 

Jaime Lee  31:13

The goal of the TTS is to measure communicative success via texting. We wanted this functional measure of texting, not limited to accuracy, not looking specifically at spelling, or syntax, or morphology, but something that reflected the person with aphasia-- his ability to exchange meaningful information. I think the measure is really grounded in the idea that people with aphasia are competent and able to understand and convey meaningful information even despite any errors or incorrect output. So this is really relevant to texting because lots of us are using texting without correct spelling or without any punctuation or grammar. Yet lots and lots of people are texting and conveying information and feeling that benefit of connecting and exchanging information.

Ellen Bernstein-Ellis  32:08

It sounds like a really helpful tool that you're developing. Could you please explain how it's used and how it's scored?

Jaime Lee  32:16

Sure. So the TTS is a three-point rating scale that ranges from zero, which would be no successful transaction, no meaningful information exchanged, one, which is partial transaction, to two, which is successful transaction. And we apply the rating scale to responses from an individual with aphasia on the short texting script that I was talking about earlier. So this is a three-turn script that is delivered to a person with aphasia where the first line there, we ask them to use their mobile phone or give them a device, and the prompt is: “What are you doing this weekend?” We tell the person to respond any way they want, without any further cues. And then the script goes on, we deliver another prompt, “What about dinner?” And then another prompt, “Great, when should we go?” Each of those responses, we score on the TTS rating scale. We give either a zero, a one or a two. We have lots of examples in the paper of scores that should elicit a zero, a one or a two.We feel like it should be pretty easy for readers to use.

Ellen Bernstein-Ellis  33:33

Wow, that's going to be really important. I always appreciate when I can see examples of how to do things.

Jaime Lee  33:40

We did some really initial interrater reliability on it. The tools are pretty easy to score. We're able to recognize when something is fully transactional, even if it has a spelling error or lexical error, we can understand what they're saying. And a zero is pretty easy to score, if there are graphemes letters that don't convey any meaning, there's no transaction. Where things are a little more interesting, are the partial transaction. I think about an example to “What about dinner” and the participant responded, “Subway, Mexico.” So that's a one because the conversation, the texting partner, would really need to come back and clarify like, “Do you want to get a Subway sandwich?”  Or “Do you want to go eat Mexican?” It could still be really transactional, and they could resolve that breakdown, but the partner would have a little bit more of a role in clarifying the information.

Ellen Bernstein-Ellis  34:36

When you were actually trying to validate the TTS and establish its interrater reliability in your 2021 article with Cherney you mentioned using the Technology Confidence Survey from the 2021 Kinsey et al. article. Having tools that allow us to understand our clients’ technology user profile is really informative in terms of understanding what modes of communication might be important to them. We talked earlier about not assuming, right, not assuming what people want to do or have done. Can you describe the survey? And is it available?

Jaime Lee  35:13

Sure, yes. This is a survey we developed for the T-write study, the ORLA Plus Electronic Writing study. It's a simple aphasia friendly survey with yes/no questions and pictures that you can ask participants or clients about their technology usage. from “Are you using a computer? Yes or No” or  “Are using a tablet?”, “Are you using a smartphone?”  We ask what kinds of technology they're using and then what are they using it for? Are they doing email? Are they texting? Are they looking up information? Are they taking photos? 

It also has some prompts to ask specifically about some of the technology features like “You're texting? Are you using voice to text?” or “Are you using text to speech to help you with reading comprehension of your text?” 

At the very end, we added some confidence questions. We modeled this after Leora Cherney and Ed Babbitt's Communication Confidence Rating scale. So we added some questions like, “I am confident in my ability to use my smartphone” or “I am confident in my ability to text” and participants can read that on a rating scale. We use this in the context of the research study to have some background information on our participants. I think it could be a really great tool for starting a conversation about technology usage and goals, with people who are interested in using more technology, or are using it in different ways. This (survey) is in the Kinsey et al. article. It’s a supplement that you can download. It's just a really good conversation starter, that when I was giving the technology survey to participants, many times they would take out their phone or take out their iPad and say, “No, I do it. I use it just like this”. It was really hands on and we got to learn about how they're using technology. And I definitely learned some new things that are available.

Ellen Bernstein-Ellis  37:20

I think many of us use kind of informal technology surveys.  I'm really excited to see the very thoughtful process you went through to develop and frame that (technology use). That's wonderful to share. Jaime, can you speak to the role of the TTS in terms of developing and implementing intervention approaches for texting? You just mentioned goals a moment ago?

Jaime Lee  37:42

Sure. I think we have some more work to do in terms of validating the TTS and that's a goal moving forward. But it's a great starting place. If you have a client who wants to work on texting, it only takes a few minutes to give the script and then score their responses and gives us a snapshot of how effectively they're able to communicate through text. But in terms of developing intervention, to support texting, that's really where we're headed with this. I mean, the big drive is to not just study how people are texting, but really to help support them and texting more effectively and using texting to connect socially and improve their quality of life. But with any kind of intervention, we need a really good outcome measure to capture potential changes. Another reason I'm motivated to continue to work on the TTS, if people with aphasia are going to benefit from a treatment, we need rigorous tools to capture that change and document that potential change.

38:50

Ellen Bernstein-Ellis

Absolutely. Absolutely.

Jaime Lee  38:53

At the same time, I'd say the TTS isn't the only method we are focused on, we're really interested in understanding what unfolds during texting interactions. What's happening in these interactions. So, most recently, I've been working with my amazing collaborator, Jamie Azios, who is an expert in Conversation Analysis. I’ve been working with Jamie to say, “Hey, what's happening here? Can we use CA to explore what's going on?” 

Ellen Bernstein-Ellis  39:25

Well, Jaime, you probably heard this before, but Conversation Analysis can sometimes feel daunting for clinicians to use within their daily treatment settings. In fact, we've had several podcasts that have addressed this and have asked this question. What are you finding?

Jaime Lee  39:40

I can definitely relate because I am still very new to CA and learning all the terminology. But Jamie and Laura and I are actually working on paper right now, a CAC special issue, because we presented some data at the Clinical Aphasiology Conference and then will have this paper. We'll be submitting to a JSHL on how we're applying CA to texting interactions. That goal is really based around understanding how people with aphasia and their partners are communicating via texting and looking at these naturalistic conversations to see what barriers they're coming across, and what strategies they are using to communicate in this modality.

Ellen Bernstein-Ellis  40:27

That makes a lot of sense. And it really circles back again to communication partner training. That does not surprise me.

Jaime Lee  40:33

We're seeing some really interesting, creative, and strategic behaviors used both by people with aphasia and their partners. We’re seeing people link to a website, or instead of writing out the name of a restaurant, you know, “meet me here” with a link, or using an emoji to help convey their stance when they can't meet up with a friend. They might have more of an agrammatic production. But that emoji helps show the emotion and we're seeing a lot of people with more severe aphasia using photographs really strategically.

Ellen Bernstein-Ellis  41:09

So those are the strategies are helping and I'm sure that CA also looks at some of the barriers or breakdowns, right? 

Jaime Lee  41:15

Yes, we're seeing some breakdowns, trouble sources in the CA lingo. In some instances, we see the partner clarify, send a question mark, like, “I don't know what you're saying”. And that allows the person with aphasia, a chance to self-repair, like, “Oops, here, this is what I meant.” And that's really useful. We also have seen some examples of breakdowns that may not get repaired. And we don't know exactly what was happening. In those instances, I suspect there were some cases where maybe the partner picked up the phone and called the person with aphasia, or they had a conversation to work out the breakdown. But we really don't know because we're using these data that were previously collected. So a lot of this does seem to be pointing towards training the partners to provide supports, and also helping people with aphasia be more aware of some of the nonlinguistic tools, and some of the shortcuts that are available, but there's still a lot to learn.

Ellen Bernstein-Ellis  42:22

Well, Jaime, as you continue to explore this work, I know you're involved in a special project that you do with your senior undergrads at your university program at James Madison. Do you want to describe the student text buddy program? It sounds really engaging.

Jaime Lee  42:38

Sure. This is a program I started here at JMU. JMU has a really big focus on engaging undergrads and research experiences. And we have students who are always asking for opportunities to engage with people with aphasia. Particularly during COVID, there weren't these opportunities. It just wasn't safe. But I know some of the participants from the T-write study and some people with aphasia in our community here in Harrisonburg, were looking for ways to be involved and continue to maybe practice their texting in a non-threatening situation.

So this was a project and I was actually inspired by one of the students in my lab, Lindsay LeTellier. She's getting her master's degree now at the University of New Hampshire. But Lindsay had listened to an interview with one of our participants where she said she wanted a pen pal. And Lindsay said, “Oh, this participant says she wants a pen pal, I'd love to volunteer, I'll be her pen pal.” And I said, “Lindsay, that's great. I love the idea of a pen, pal. But if we're going to do it, let's make it a research project. And let's open it up and go bigger with this.” So Lindsey helped spearhead this program where we paired students with people with aphasia to have a texting pen pal relationship for four weeks. And in order to be able to kind of watch their texts unfold, we gave them a Google Voice number, so that we can watch the texts. 

We've really seen some really interesting things. We’ve only run about 10 pairs, but all of the feedback has been really positive from the people with aphasia, they felt like it was a good experience. And the students said it was a tremendous learning experience. 

We're seeing some interesting things. Using CA, Jaime and I presented this at IARC, sharing what the students/person with aphasia pairs are doing that's resulting in some really natural topic developments and really natural relationship development.

Ellen Bernstein-Ellis  44:39

Nice! What a great experience, and we'll look forward to hearing more about that. Jaime, I can't believe how this episode has flown by. But I'm going to ask you a last question. What are you excited about in terms of your next steps for studying texting?

Jaime Lee  44:57

I think we definitely want to continue the Text Buddy project because it's such a great learning experience for students, so we'll be continuing to do that. Jamie and I have applied for funding to continue to study texting interactions and use mixed methods, which is a pairing of both of our areas of expertise. I think there's just more to learn, and we're excited to eventually be able to identify some texting supports to help people with aphasia use texting to connect and be more effective in their communication.

Ellen Bernstein-Ellis  45:35

Well, Jaime, this work is going to be really impactful on the daily lives and the daily ability for people with aphasia to have another mode of support for communicating. So thank you for this exciting work. And congratulations again on your Tavistock award, and I just am grateful that you are our guest for this podcast today. Thank you.

Jaime Lee  45:58

Thank you so much, Ellen. This has been great, thanks.

Ellen Bernstein-Ellis  46:01

It’s been it's been a pleasure and an honor.  So for our listeners, for more information on Aphasia Access and to access our growing body of materials, go to www.aphasiaaccess.org. And if you have an idea for a future podcast series topic, just email us at info@aphasia access.org. And thanks again for your ongoing support of aphasia access.

References and Resources 

Babbitt, E. M., Heinemann, A. W., Semik, P., & Cherney, L. R. (2011). Psychometric properties of the communication confidence rating scale for aphasia (CCRSA): Phase 2. Aphasiology, 25(6-7), 727-735.

Babbitt, E. M., & Cherney, L. R. (2010). Communication confidence in persons with aphasia. Topics in Stroke Rehabilitation, 17(3), 214-223.

Bernstein-Ellis, E. (Host). (2021, July 29). Promoting Conversation and Positive Communication Culture: In conversation with Marion Leaman (No. 73) [Audio podcast episode] In Aphasia Access Aphasia Conversations. Resonate. https://aphasiaaccess.libsyn.com/episode-73-conversation-and-promoting-positive-communication-culture-in-conversation-with-marion-leaman

Brown, G., & Yule, G. (1983). Discourse analysis. Cambridge. University Press. https://doi.org/10.1017/CBO9780511805226

Fein, M., Bayley, C., Rising, K., & Beeson, P. M. (2020). A structured approach to train text messaging in an individual with aphasia. Aphasiology, 34(1), 102-118.

Kagan, A., Simmons‐Mackie, N., Rowland, A., Huijbregts, M., Shumway, E., McEwen, S., ... & Sharp, S. (2008). Counting what counts: A framework for capturing real‐life outcomes of aphasia intervention. Aphasiology, 22(3), 258-280.

Kagan, A., Winckel, J., Black, S., Felson Duchan, J., Simmons-Mackie, N., & Square, P. (2004). A set of observational measures for rating support and participation in conversation between adults with aphasia and their conversation partners. Topics in Stroke Rehabilitation, 11(1), 67-83.

Kinsey, L. E., Lee, J. B., Larkin, E. M., & Cherney, L. R. (2022). Texting behaviors of individuals with chronic aphasia: A descriptive study. American Journal of Speech-Language Pathology, 31(1), 99-112.

Leaman, M. C., & Edmonds, L. A. (2021). Assessing language in unstructured conversation in people with aphasia: Methods, psychometric integrity, normative data, and comparison to a structured narrative task. Journal of Speech, Language, and Hearing Research, 64(11), 4344-4365.

Lee, J. B., & Cherney, L. R. (2022). Transactional Success in the Texting of Individuals With Aphasia. American Journal of Speech-Language Pathology, 1-18.

Meredith, J. (2019). Conversation analysis and online interaction. Research on Language and Social Interaction, 52(3), 241-256.

Ramsberger, G., & Rende, B. (2002). Measuring transactional success in the conversation of people with aphasia. Aphasiology, 16(3), 337–353. https://doi.org/10.1080/02687040143000636

Todis, B., Sohlberg, M. M., Hood, D., & Fickas, S. (2005). Making electronic mail accessible: Perspectives of people with acquired cognitive impairments, caregivers and professionals. Brain Injury, 19(6), 389-401.

Link to Jaime Lee's University Profile: https://csd.jmu.edu/people/lee.html

mu.edu/people/lee.html

Thanks for listening in today. I’d like to welcome you to this episode of Aphasia Access Conversations Podcast. I'm Katie Strong, Associate Professor in the Department of Communication Sciences and Disorders and Director of the Strong Story Lab at Central Michigan University and serving as today’s episode host. Today I’m talking with Dr. Sameer  Ashaie from the Shirley Ryan Ability Lab. Before we get into our conversation, Let me tell you a bit about our guest. 

Dr. Ashaie is a Research Scientist in the Think and Speak Lab at the Shirley Ryan AbilityLab and a Research Assistant Professor in the Department of Physical Medicine and Rehabilitation at the Feinberg School of Medicine, Northwestern University.  He earned is PhD in Speech-Language-Hearing Sciences at the Graduate Centre, CUNY.  He is recipient of the 2022 Tavistock Trust for Aphasia Distinguished Scholar Award. Dr. Ashaie was also a recipient of NIDILRR's Switzer Merit Fellowship and NIDILIRR's Advanced Rehabilitation Research and Training post-doctoral fellowship. His lab the Shirley Ryan Affective and Emotion Rehabilitation Lab (SAfER) focuses on aphasia rehabilitation, particularly identifying post-stroke depression and related psychosocial disorders. He employs a variety of techniques in his research including eye-tracking and heart-rate variability.

In this episode you will: 

• Learn about the value of having researchers integrated into clinical care.
• Be empowered to think about depression on a continuum and why how we measure depression matters.
• Hear how network models can be a more useful way to examine complex disorders. 

KS: Sameer welcome and thank you for joining me today. I'm really excited about this conversation with you, and having our listeners get to know you and your work . 

SA: Thank you for having me here. You know I listen to the podcast, and I wasn't expecting to be here one day. So, it's a privilege being here. I

KS: Congratulations on receiving the Tavistock Distinguished Scholar Award. Can you tell us a bit about the impact of receiving this recognition? 

SA: It's a big honor. You know, oftentimes as an early career researcher in the field of physiology or I guess any field me especially I'm wondering like, if I'm doing whatever I'm doing, is it making sense? Is it making a difference? Are people noticing it? So getting this award especially and people that have gotten before me and the work they're doing? It really validates what I'm trying to do as an indication of where I'm trying to take my research program and I’m hoping that it has an impact on people with aphasia, and as well as the broader research community.

KS: Absolutely! I'm excited to start talking about your research. But before we get to that, I'd love to hear a little bit about how you came into the field of speech language pathology, because it wasn't a direct line. Your story is in fact quite interesting. And I think you refer to it as a winding path. Could you tell us a little bit about how you came to be working in the area of aphasia?

SA: I started my PhD in theoretical linguistics, looking at generative phonology. And then I ended up taking a class with Dr. Loraine Obler. It was a class on the historical debates on language localization. And that really got me interested in language. After two years in theoretical linguistics, I switched tracks to neuro linguistics, communication science disorders. Because I really got interested in just language, more than just a theoretical perspective that I had as a linguist. And then, of course, there are two people that really had an impact on my career and continue to have an impact on my career. One is that I did my PhD with Dr. Jamie Reilley at Temple. And that's how I got interested into sort of the semantic aspects of aphasia. And he was really supportive and was really great in how we think about science and how we do science. 

And then I would say that the person who's had the most impact and continues to have the most impact, and really has made me think about this field is Dr. Leora Cherney. And I'm really indebted to her in terms of how I think about this field, how I think about our participants, how I think about how aphasia impacts their life in totality. And just seeing that kind of dedication and thinking about research that is support to impact people's life. And getting that inspiration from Leora. She has been really critical for me to really falling in love with this field, because you're keeping your participants at the center of the work you do. I mean, you might not see the impact, but you're trying to keep them that that is what your aim is. And I guess that's how I kind of came to this field, you know, some from sort of theoretical linguistics and interested in semantics and then getting a postdoc with Leora. And being inspired by her and the support she's given me to explore things. And carry a different line of research, but always keeping the participants in mind.

KS: So, you’re a research scientist who works in a rehabilitation hospital. I’m not sure if our listeners know exactly what you do all day long. Would you walk us through a ‘typical day’ – if there is such a thing? What do you do in your lab? Would you talk us through that a bit? 

SA: Yeah, I, myself did not know what a research scientist is what I was doing! It was all new to me as well. It's different than a traditional academic position, and especially in a place like, Shirley Ryan AbiityLab, which is a rehab hospital. Especially the model in our rehab hospital is that researchers are integrated into the clinical care. So, what I mean by that is that our labs are situated right where therapies are happening. So even though we're not involved in therapy that's happening with the patients getting the care at that time, we can see different types of therapies. That might be OT (occupational therapists) giving therapy, or speech-language pathologists, physical therapists. So that's that integration. You really get to see patients. You get to see sort of different issues that you might not think about, because we're so discipline focused, right? So, it opens up your mind to all sorts of possibilities, collaborations, issues you might not think about. For example, physical factors are really important for people, but seeing that live and that being worked on, it has a different impact on you. The second thing is that, as a research scientist, you're not teaching classes. Your primary work is centered around research, which, which has its perks, but also that you miss sometimes that interaction, you might have had students in a traditional setting. Not that we don't get students (at Shirley Ryan AbilityLab), we do. But the primary focus is really getting the research program started. And there are no things like semesters, you have the whole year. We work on the hospital schedule. And as an early career (professional), a lot of what you do is dependent on how you get funded and that's how you established your lab. So we so for example, as an early career person, you might not necessarily have a lot of students working for you because we're not in a Communication Sciences Disorders department. So that's sort of different. But the main thing is that it's an academic environment, but it's not a university. 

KS: Yeah yeah you're right there in the thick of all of that rehab work. That’s fabulous. I had the honor of doing a tour at Shirley Ryan at one of the Aphasia Days before COVID hit and it's just such a beautiful facility. It’s just stunning. I love hearing about your path and a little bit about your work life and I've been interested in your research for a while now. I'm so excited to have this conversation. Your work in in mood and depression is something that really is an important area and I was hoping as we get started in this conversation if you could frame for us why this is such an important topic that extends to research and clinical work.

SA: This is such an important question. And when I started my post-doc in the field of aphasiology, I was not interested in depression or mood. I was really interested in  semantics. But, you know, talking to the patients being embedded in a clinical environment and talking to family members, everybody talked about the importance of mood, and depression. And what I realized is that everybody's talking about its importance. Everybody gives it a nod. But we're not all assessing it in a systematic manner. But we all recognize its importance, and people need this support. So, I started digging in and seeing in the literature what's going on. I came across this meta-analysis that was published in 2017, I think by Mitchell et al., and they looked at I think around 108 studies of stroke and only five studies with people with aphasia have looked at depression. I was like, that does not sound good. And then, studies that are in the field of aphasiology that look at depression used measures hadn't been validated in our field. So, I was like, we all recognize that this is an important problem and people need the support, but before we can go anywhere, that we need to figure out a way, how we can identify depression in people with aphasia, systematically. 

And of course, the big challenge I started thinking about that time is “how do you ask people that have language deficits about their inner feelings? Without sort of prompting them?” You know, we all use scales, those of us who do assess depression, we might modify them. But sometimes those questions are tricky to understand. And if you're modifying them, you might lead a person on to an answer. That's one thing. We can rely on caregiver reports for depression, and they're good. But we also know that those reports can underestimate and overestimate depression. And they're highly impacted by caregivers’ mood itself. That was another thing. So, I wondered what can we do that assesses this systematically? And we can also include people with severe aphasia, who we often just exclude from these studies and who might have some of these most issues when it comes to mood or depression. There's some work in neurotypicals, that use a variety of techniques. For example, eye tracking. Research has shown that people who are depressed, tend to look longer at sad faces, or stimuli that denote sad valence. And their response is blunted away from positive stimuli. For example, if people are depressed they might look longer at a sad face and they might also look away from a happy face. There is also work looking at heart rate variability as well which uses certain metrics that you could derive from variability in between your heartbeats might tell us something about depression. This is also true with the dilation of our pupils, or EEG. And of course, none of these measures are perfect. Like we know with anything, we're not getting perfect measurements. But I started thinking that “yes, they might not be perfect, but can I come up with an algorithm or some kind of a composite that takes all these things into account, because if they all point to the same problem, then that problem must be there.” So that's one of the things I'm trying to do right now is combine pupillometry, heart rate variability, and eye tracking to see if we can come up with some kind of a metric that can identify depression. That way, we can move away from language in the sense that we’re only using minimal language in terms of directions. We might just show people a happy face, or some emotion that some stimuli that denotes emotion. 

The second sort of thing, which is really important is that not thinking of depression as something you either have it or you don't have it. It's on a continuum. It could fluctuate. One day, you could have some symptoms. Another day, you might not have any other symptoms. Or in the same day, it might fluctuate. So, how do we assess that? Related to that is not just relying on some scores. For example, we all just take, like, let's say we take a common scale, like the PHQ-9 (Patient Healthcare Questionnaire-9^th Edition) and we might take the scores, and we sum them up and say, “hey, this person they're above a cut off”. But in that kind of approach, we're also missing what these individual symptoms are doing. The person might not endorse every single symptom in that scale. But they might endorse some symptoms. So are we just going to say, “no, they didn't meet a cut off, but they had three symptoms that they were on the scale. For example, ‘I was sad. I was fatigued, I had a loss of appetite.” But everything else wasn't there. Are we just going to negate those symptoms? So how do we take these symptoms into account as well, when we are thinking about depression. Within the broader field of psychopathology, there's a lot of movement thinking about individual symptoms as well. So, I'm just basically taking that and applying it to our field. It’s nothing new that I'm coming up with, rather is just really seeing what people in the field of psychopathology are doing, confronting all these problems. And thinking about how this can applied to our field, because they might really have a direct impact on something we're doing when it comes to treatment, right? For example, if we start thinking about individual symptoms and that day a person is fatigued. Well that might directly impacted how they respond to treatment rather than just as a sum score. So that's another angle I'm taking when it comes to this work and depression.

KS: That is so important. We all know what matters, but can you help us to know like, how big of an issue is mood depression in aphasia, you know, incidence prevalence or what, you know, do we know anything about that?

SA: We do. And if you look at the literature, once again, they're so varied. Some papers might report 70%, some papers might report 30%. But I would say at least, it ranges anywhere from 30 to 70%. But I think a lot of that is also dependent on how we're assessing it. Going back to the scales that we are using and how reliable those scales are. There was a systematic review early on that indicated most of these skills might not even be valid. Are we use a caregiver reports? Are we supplementing that with something? In the general stroke population, we know at least 1/3 of stroke patients have depression. And with aphasia, it's between that 1/3 to 70%. It is most likely much more than that. But I think, to really get at it, we really have to start thinking about the tools we're using. But we know it's an issue because clinicians report it, patients report it, caregivers report it, whatever literature we have, which is not much, those studies report it. In our own study, we looked depression that might not meet the threshold for major depression. And we had around 20%, and those that meet (criteria) for minor depression, those were like, 18% or so. So, it's in that 30-40% range. It's a big issue. 

But I think the bigger issue is that we are really missing how many people have it? How many people have the different symptoms? And what we also have is an incidence rate, a snapshot of the incidence rate, right? Like, you know, at six months, at one year, but we really need to start thinking about daily and how sort of depression changes over time. It will not be sort of weekly or yearly, we don't have that much longitudinal work, either. When I talk about daily, I talk about real world as well. I don't know if that answers your question…

KS: It does. Yes, absolutely. Yeah, I love that, that it's we have some ranges, they are not probably as accurate as they could be, because we don't have the right tools to assess it, and that they're just a snapshot that we're not really looking at this over time or, as you said that day, that daily basis. 

SA: One thing that I want to point out is that, and even with the lack of tools it’s good that we are still assessing for depression. I don't want to make it seem like that there's nothing out there. But I think like for all of us, even the tools we're coming up with, we should always be thinking in our own, how can we improve upon whatever we have. And we all get attached to the methods we use. But I think at the back of our head, we should always be like, “can we improve these methods? Can we do something better?” Because ultimately, it's not about us. It's about people, our patients, our participants, family members that we're trying to do these things for. So it's really great that tools do exist, but we have to be candid, that we might not be getting everything out of them. They're a great steppingstone, but we have to constantly go back and build and just keep on taking new developments in the field of psychopathology in the field of measurement science and applied to them so that our field is moving along as well.

KS: It's kind of the essence of evidence-based practice, right? We're using the best tools that we have at the moment, but that certainly we need to be on the lookout for what's coming in the newer literature or tools. Sameer, you have some really cool projects going on related to depression and mood. You talked a little bit about them earlier, but could you give us a little more detail on what you've got going on? 

SA: So, one thing I could kind of hone in on that I mentioned earlier is on eye tracking. Right now we're trying to come up with some kind of an algorithm where we are relying minimally on language. So just the directions are language based. We're getting people in, and we're doing a combination of eye tracking changes in the pupil dilation and heart rate variability, as people are looking at different stimuli that denote different emotions. We have a paper out that looks at the feasibility of it. And what we’re basically looking at trying to quantify that using some existing scales and caregiver reports. Can we then take these metrics and see whether people are looking at sad or happy faces, or any other stimuli that denote emotions, and is that related to these traditional scales. And then how can we then come up with a metric based on these three measures, pupillometry, heart rate, and some of the eye tracking indices that can point out depression in people with aphasia? We're using these tools, but the approach is out there. Anytime people are validating new tools, they have to rely on existing tools and go through these different iterations. So right now, we're in the first iteration trying to see what kind of metrics we can extract and what those metrics can give us that are easy to use. And one thing is that eye tracking or heart rate variability over the years, they have become really accessible, and the tools are not expensive themselves. So, with the aim that down the line, can this be used in the clinical setting? Of course, we're far away from that. But that's the end goal, we hope as a quick diagnostic check.

KS: Okay, yeah, that's what I was going to ask you, because we've got a lot of listeners who are clinicians. And, you know, sometimes as clinicians, it's difficult to see the relevance of things like eye tracking and heart monitoring, when you're reading literature, when you're trying to figure out, “How can I help this person right in front of me?” So, I was hoping you could explain a little bit why those tools to track variables are so important.

SA: I think this is a great question. And I think the big thing is that sometimes we just need to demystify these tools. I liked the way you framed it. We really have to think of them as tools. They're tools that were trying to use to assess a problem that might be difficult with the traditional language measure. That's really it. It's not they are better than behavioral measures. It's that because people aphasia have difficulties in language production and comprehension, can we use something else that relies minimally on language? That's really it. It's not some kind of fancy approach. Yes the tools themselves might sound fancy and stuff, but really the aim is it's just a tool that's addressing a certain problem. And with heartrate variability, we can already see because now it's so common, right? All our Fitbit or Apple Watches, they all have it. And even at a basic level, we're starting to think like, “Oh, this is what my activity level refers to.” So, I’ve started thinking about those kinds of things in a clinical setting. And the same thing with eye tracking. If these tools are sort of readily available, can we train people to use them in a quick way? Because of course, you could do fancy analyses, but you could also look at just quick measures that if the pipelines are in a place that people could just pull it out. Just like when clinicians give a battery of tests, if you ask me, I'm not a clinician, that's really complicated. You're working with a human being you have to change it on the fly. But people get trained on it all the time and can do it. It is the same thing with these tools but if we are successful in coming up with these metrics and these algorithms.. why not? Can clinicians be trained on using these tools in a clinical setting. 

KS: It's exciting to be thinking about that identification of depression or mood disorder. We've got lots of work to do on what to do once it's identified, but just the identification is, as you said, that first step. I was curious if you might be able to recommend something to our listeners, you know, as I said, lots of us are clinicians, about what we should know or do right now about supporting mental health and people with aphasia.

SA: I think all the clinicians I've talked to everybody recognizes the problem. That's the biggest step first of all. I think then it is really being aware of systematically assessing it. To be clear, I don't want to negate the support part. That's the end goal. But if we're not assessing depression routinely, then we're missing a big chunk. I want to keep stressing that point. I think the one thing clinicians can do is to start assessing people to the best of one's capability. If you're using a scale, then being systematic with that scale. If you're giving it in one iteration, you're giving it one way, on Day One. When you give it again, try to be as close in how you previously administered it so that we we know that you are assessing that same construct. 

The second thing is what I've touched on earlier, is that thinking of depression as a continuum and that it fluctuates. It’s not enough to just give a screening once, or to assess this person's mood, pretreatment and post treatment. But what about daily? Because if you start looking at daily variability, you might really start thinking, “Oh, no, we're all here. Like the patient he was feeling kind of down today. I don't know if you’ve put enough effort into it or something along those lines.” Well, low motivation and those kind of things are symptoms of depression. So I’d like to encourage clinicians to start thinking about assessing this daily.  And I think then, once we start sort of assessing it routinely, and making it a part of our work and not thinking of it as separate. That’s the key. Not thinking about it like language is here, depression here. Like you know, the work you do, Katie, on narratives or stories, this is all interactive. They're all impacting each other in some sort of a loop. 

And then lastly, once we're getting these, and we're routinely assessing people and getting them, then thinking about getting mental health support. And for that, we really have to start thinking about interdisciplinary work. And you could speak to that as well, because I know that you have those projects going on. We can do everything on our own, working with psychologists, referring people…once we can define these basic systems, and then, you know, down the line and training psychologists or psychiatrists and different techniques that they can work with people aphasia. Or clinicians who are up and coming getting some training. And that this is just part of routine care. It's not something we recognize the importance, but then we kind of put it on the back burner. 

KS: Yes, right the back burner. Or say, “we don't have the tools, so we don't know what to do but we recognize it's a problem, but we don't do anything about it.” I agree. Sameer, since you brought up the interdisciplinary work and you have developed some relationships in psychology. I feel like you're kind of an exemplar interdisciplinary collaboration. Could you talk about how this collaboration has influenced your work and give our listeners any tips on how to develop such a rich collaboration?

SA: All of the work I'm doing in depression and thinking about this is really influenced by people in the department of psychiatry and psychology. Much of my collaboration is with Dr. Stewart Shankman, who is the Chief Psychologist at Northwestern. And being a part of the National Institute of Mental Health (NIMH) thinking about “how do we conceptualize depression?” and things like that. I just reached out to him, because I was interested in his work. I think we have to not be scared that people might not respond if we reach out. I just emailed him, and he was nice enough to respond. And I started attending his lab meetings and presenting our work to the lab and this problem, “how do you assess depression in people that have language deficits. How do we assess their inner feelings when they can’t express themselves?” Being embedded in sort of in his work group, I was really exposed to this work. I don't think I would have been exposed to the work that people in that field are doing. For example, debates about how do we think about symptoms? Or how do we integrate these tools? How do we think about different emotions? And then applying it to our field of CSD. And thinking about metrics of depression. My work has really been influenced by how people in that field are grappling and using these issues. One can’t do this work in a void. If there are people who are doing this work and that's their field, it only benefits us to form collaborations with them, learn from them, and bring our unique problems to them. So that we could come up with solutions that integrate the best of our knowledge domains. In other words, that team science approach is really the approach I'm taking towards this issue of depression. I think any work we do in the field of psychosocial disorders, mood, anxiety, fatigue, or whatever, I think it's really important that we start working with people who have focused their career on this issue.

KS: I so appreciate you sharing that. And even just the simple tip of putting yourself out there to send an email and introduce yourself to someone who's from a different discipline to start that relationship is important. I envision through attending his lab meetings, you're there in his world, learning about things in a way that you wouldn't be, if you weren't a part of what he's got going on. And thinking deeply about how you can apply that to your interests in aphasia. I'm so excited. Our field just needs this innovation and it's exciting to hear about the work you're doing.

SA: If I just did all on my own, I would have been just looking at what's in our field, what's in stroke, looking at papers…but you're not embedded in people who are doing this daily. They might not be doing it in our population, but this is what they're doing. And they're grappling with the conceptual issues as well. Tools, measurement, scales, everything. So that's a huge benefit to us because when we think about depression and stuff, yeah, the work has been done, but when you're embedded in that setting, you could take some of the newer things and start applying it as well. Seeing how we can move rapidly. And of course, then the flipside is like, also the collaborators have to be willing to collaborate with you. Dr. Shankman, he's been great. He's been willing and he’s been great at mentoring me. I think most people, if you reach out, and you explain what you're trying to do people are willing and you also can contribute to their work, that I think that you know, these relationships will form.

KS: Well, that is how cutting-edge work gets done. It's exciting to hear about it. You also have some additional interesting work, particularly in network analysis. Sameer, could you tell us what network analysis is, and why it's important to life with aphasia?

SA: In a nutshell, if we start talking about networks, networks are everywhere, right? Most of us are privy to the notion of social networks. That we're a bunch of friends, we're connected to each other. And a group of friends might cluster together, and then that cluster is connected to someone else. Anything, we take a look at it, if it's complex, it forms a network. Consider airports, highways, how they're interconnected. Certain things are central and more important than others. That's a network. People often give an example a flock of birds.  Birds might have different characteristics. But when they form a flock, it's made up of different parts, but they're all interacting together to form that flock. That's basically what network is. And it's derived from graph theory in mathematics. But at the end of the day, it's about looking at complexity. Anything that's complex, we could think of it as networks. So the work of network analysis, it's a collaboration between me and Dr. Nichol Castro at Buffalo. Both of us are interested in this approach and we decided to tackle this together. Right now we're building a network model of aphasia. One of the reasons, we decided to think about network approach is that going back, you know, we have these these two approaches, and people do integrate them. People do give nod to them, but impairment-based approach an LPAA (Life Participation Approach to Aphasia). And it's not to say that people that focus on impairment don't care about LPAA, or people that embrace LPAA, don't care about impairment. But generally, there is some kind of distinction being made, either implicitly or explicitly. And you might give nod that one thing is more important than other. But me and Nichol, we started thinking rather than thinking, “Okay, rather than thinking about what is important (language, or depression or anxiety) what about coming up, and thinking about all of them interacting in the network. And not assigning a priori importance to either one of them but rather looking at these interactions between multiple factors, and how they might impact each other, so that we're not missing anything, because aphasia is complex. It's not just about language. It's not just about depression. It's not just about supports (social support). It is about everything. So that's where a network model becomes useful. And then from there on building these initial models, then one could start thinking about treatment. That it is possible in a network, that one thing is more important than the other. And that is taking it one step further in an individual, Individual, A versus B, something might be more important in Individual A, like depression, and in Individual B it’s communication confidence. We could start by building a big model first. And of course, all these things have steps and eventually come to that and thinking about how can we identify critical, important factors for a person that we could intervene on? But before we could do that, we wanted to build a bigger model at a group level, and start seeing what things are important in this network? And, and not thinking like, “Okay, I'm gonna just call aphasia…and we all are used to saying ‘aphasia is a disorder of language. Blah, blah, blah,’ could be also impacted.’ But aphasia is a complex disorder, let's see how these all these things interact.” You don't have to assign the importance to A or B. Or say like, “Okay, I'm going to look at attention, maybe that's about language.” Instead, let's see how all of them are impacting each other and are some things more important than others. I think with this kind of approach…all of us have this thinking. We're just trying to come up with a model that addresses this. And eventually, then this kind of model doesn't have to be just limited to outcomes. People could integrate brain, genetics, you could have different layers. And that goes back to your work about interdisciplinary collaboration. When you start thinking about things as a network, that can also extend to the network of people who are doing work in aphasia. That if it's a complex disorder, and people are looking at all these complexities, because not everybody can do everything that we can take the network of future researchers, and then why not integrate and use that network model for the vision and see all these things? That's what we kind of really are trying to get at.

KS: The potential is powerful. Wow. Well, you've got a manuscript in the works that's about this complexity of participation poststroke. I really enjoyed reading about the project. But one thing that really struck me in the findings was how positive affect impacted participation. Could you tell us about this and the project? 

SA: So this is all pre-existing data. We wanted to establish some sort of causal relationship at Time Point 1. For example at 3 months post discharge, can you predict something at 12 months post discharge? And one the reasons we were interested in positive affect is that we always think about depression, but positive affect is there too, right? And having positive affect could impact people in a positive way. We wanted to look at all these things, put them on the network and see how they're interacting to determine what might be causing or establishing some sort of causality. What was really interesting is that we thought that perhaps social support would predict participation. But it was really positive affect early on, that was predicting many of these things. When you really start thinking about it, it's not that surprising, because if you're feeling positive, and psychology, then you're going to seek out more help. And then you're going to seek out more help, you might participate more in the community. But having that affirmation is critical, because then once again, it goes back to a question mental health support. How can we focus on positive affect, as well, in our treatment? Maybe, if that's kind of integrated with intervention. If people are feeling better, or happier with that sort of, you know, give them some push towards seeking more help? And it's all cyclical, right? And that's what we are seeing, at least in this early work.

KS: Oh, it's really interesting. I think clinically we know that in our gut, but is there something we can do to promote that or help support that down the road? This fabulous, fabulous! Well, Sameer, this time has gone by quickly. I've enjoyed the conversation. As we wrap up, do you have any final thoughts you'd like to share with our listeners?

SA: Thank you for having me here. And it's a privilege being in this field, especially as somebody who was trained early on as a linguist, and now I'm doing complete something else. And I'm working with clinicians. It's an honor to participate. It's really a privilege. Thank you for having me here.

KS: It's fabulous that you're here and doing this important collaborative work. Thanks for spending time with us today. You've given us lots of food for thought. Listeners, check out the show notes and I'll have links to all of the Shirley Ryan AbilityLab details there as well as Sameer’s work and some of the other things that we talked about during today's conversation. 

On behalf of Aphasia Access, we thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org If you have an idea for a future podcast topic email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.

Websites and Social Media

Shirley Ryan Ability Lab  https://www.sralab.org/  

Shirley Ryan Think + Speak Lab https://www.sralab.org/research/abilitylabs/think-speak-lab 

Shirley Ryan Affective and Emotion Rehabilitation (SAfER) Lab https://www.saferlab.net/  

Shirley Ryan Ability Lab on Twitter/Facebook @AbilityLab 

Interested in Digging Deeper? 

Ashaie, S., & Castro, N. (2021). Exploring the complexity of aphasia with network analysis. Journal of Speech-Language-Hearing Research, 64(10), 3928-3941. https://doi.org/10.1044/2021_JSLHR-21-00157 

Ashaie, S. A.,  & Cherney, L. R., (2020). Eye tracking as a tool to identify mood in aphasia: A feasibility study. Neurorehabilitation and Neural Repair, 34(5), 463-471. https://doi.org/10.1177%2F1545968320916160 

Ashaie, S. A., Engel, S., & Cherney, L. R. (2022). Test-retest reliability of heart-rate variability metrics in individuals with aphasia. Neuropsychological Rehabilitation, 18, 1-25. https://doi.org/10.1080/09602011.2022.2037438 

Ashaie, S. A., Hung, J., Funkhouser, C. J., Shankman, S. A., & Cherney, L. R. (2021). Depression over time in persons with stroke: A network analysis approach. Journal of Affective Disorders Reports. https://doi.org/10.1016/j.jadr.2021.100131 

Mitchell, A. J., Sheth, B., Gill, J., Yadegarfar, M., Stubbs, B., Yadegarfar, M., & Meader, N. (2017). Prevalence and predictors of post-stroke mood disorders: A meta-analysis and meta-regression of depression, anxiety and adjustment disorder. General Hospital Psychiatry, 47, 48–60. https://doi.org/10.1016/j.genhosppsych.2017.04.001 

During this episode, Dr. Katie Strong, Associate Professor in the Department of Communication Sciences and Disorders and Director of the Strong Story Lab at Central Michigan University talks with Dr. Jackie Hinckley from Nova Southeastern University about stakeholder engaged research and Project BRIDGE.

Dr. Jackie Hinckley is Professor and Director of the Undergraduate Program at Nova Southeastern University. She is Board Certified in Neurogenic Communication Disorders by the Academy of Neurologic Communication Disorders and Sciences (ANCDS) and Fellow in Person-Centered Care. Dr. Hinckley is currently a Board Member of Aphasia Access and the National Aphasia Association. She is Executive Director Emeritus of Voices of Hope for Aphasia. She is Project Lead for Project BRIDGE, formerly funded by two PCORI Engagement Awards and now supported by NSU. She is the author of two books, Narrative-Based Practice in Speech-Language Pathology, and What Is It Like to Have a Communication Impairment?  Simulations for Family, Friends, and Caregivers. She is an Editor for The Qualitative Report, and on the Editorial Board of Topics in Stroke Rehabilitation and Journal of Interactional Research in Communication Disorders. 

In this episode you will: 

• Learn about the importance of including people with aphasia and clinicians in the research process to make the research better.
• Find out what stakeholder engaged research is and its importance in developing relevant evidence for clinical practice
• Hear how Project BRIDGE has enhanced stakeholder engagement in research related to aphasia.
• Be empowered to embrace your own expertise and the expertise of your clients and their family members.

KS: Jackie, Welcome back to the Aphasia Access Conversations Podcast. I believe you were first interviewed on our podcast in 2016 – Episode #2! We now have over 86 episodes that are available! Who knew the series would have such staying power. It’s really amazing! Thanks for joining me today. I’m really excited about this conversation with you and having our listeners hear about what you’ve been up to lately and how that is impacting our clinical practice and the people with aphasia that we work with.

JH: Well, thank you, Katie, for the introduction, and thank you to you and Aphasia Access for the opportunity to be on this podcast. I'm really excited to talk about these issues and talk about them with you.

KS: Well, let's dig in. So, today's topic is “everyone's an expert”. How does that relate to our clinical work and our research? 

JH: Well, you know, Carl Rogers, the famous psychologist said that we are the best experts on ourselves. And I think that we all have that thought in our minds, but it really hits at the core of person-centeredness. An expert is someone with authoritative knowledge. So that has two parts, the authority and the knowledge. And an expert comes about when people agree that an individual has high performance or high knowledge in an area. I think that the idea of person-centered care in our clinical work is that we acknowledge that our clients are the best experts on themselves. And I think most of us who are practicing speech pathologists would certainly acknowledge that and agree with that. But in reality, in a normal clinical process, it's actually kind of hard to do. Because the clinician is, by definition, an expert, and has a certain degree of authority in the clinical interaction. So, for example, clinicians need to do an assessment and a diagnosis. And the client really can't self-diagnose, so there's an issue of authority and knowledge from the point of view of the clinician. But now that authority tends to seep into other areas like goal setting, where really the client needs to bring forward their own expertise about themselves. When we continue to exercise authority over what the goal should be,  and yet, evidence shows that collaborative goal setting like goal attainment scaling significantly improves not just the immediate outcomes of therapy, but also how active the client is after they are discharged home. So, there's a tension around expertise. It has to shift back and forth during the clinical process. And a lot of times, it starts with the clinician having a lot of authority, but we have to know how to give our client that authority about themselves. So, it's only in the last decade or so that the idea of who's an expert and person-centeredness really has been applied to research. 

For example, if we think about a traditional research process, the researcher reads the literature and identifies the knowledge gap comes up with the experiment or whatever study that can contribute to that gap. And the researcher determines the design, the method, the measurement, does the research, publishes it and gets it out in a way that the researcher basically is crossing their fingers is going to have the impact that they hoped for. The problem is that it this ignores who is going to be affected by the research. So, aphasia in, our specialty in our world here, is, is always existing in persons. It's not something that we can be that we can study in a petri dish. So anytime we do research that has to do with aphasia, we need to be acutely aware that we're creating knowledge that is going to actually affect somebody's life. And so maybe this knowledge is going to affect how the aphasia is assessed or treated, or what we do to support people with aphasia, but whatever it is, it's the lives of people with aphasia that are being affected by this research. 

So, you know, let's step back a minute. And let's say I invented some new kitchen gadget, or a shoe or something, right. So. I'm the researcher of this new gadget. If I want to be successful in selling the product and having the product being used, I would have incorporated the views of people who might use it by trying out the products way before I ever try manufacturing and selling it because I need that feedback. I need to know if there are potential customers out there and whether they're actually going to use it. 

And the same thing really applies to research. So, if I'm a researcher and I create a new research product (a.k.a = knowledge, or study to create knowledge). If I create some research product, but I'm not an expert user of that knowledge, in other words I'm a researcher who doesn't do assessments every day or treatment every day, then I run the very great risk that I'm creating a product that can't quite be used by the people was originally intended for. If we really embraced person-centeredness in research, then we would start by thinking about who are the people who are going to end up being affected by this research product or this research outcome. And we would incorporate people living with aphasia, and also clinicians into our research, and that would make the research better.

KS: Powerful stuff! I remember the Disability Rights initiative using a slogan, “Nothing about us without us.”

JH: Yes, that is a great slogan that has been around for a while. And that definitely reflects the idea of person-centeredness. And I think we need to remember that slogan and everything we do, whether it's our clinical practice, but also in our research. And that's a little bit of a new way of thinking about research. So, research is not just about the people with aphasia, sometimes it is, but a lot of times it's also about what are the best practices in clinical activities. So, we need to include both people with aphasia, their families, clinicians, maybe policymakers, other people who are really the stakeholders who are affected by the research products that we make, and they need to be involved in planning and doing the research and saying what kind of research would be most helpful.

KS: I'm thinking a lot about researchers out there, Jackie, you and I included. We have clinical experience. So maybe they have a good idea of what clinicians need to know from research. 

JH: You know, I have heard this from some people saying, “Well, I've been a clinician, so I know.” And maybe that's true. I think that people like you and I, who have been spent a good amount of time being clinicians in our past, probably are ahead of the game. In a sense, we might have a better sense of what we don't know, right? Because we've been out there doing it. But I will, in my opinion, I think researchers who aren't actively out in clinical settings, and they mostly aren't, still aren't quite totally up to date with the current challenges that are being faced by people. Anthony Bourdain, the celebrity chef said, “Just because I like sushi doesn't mean I can make sushi.” So, I think we may think that…but if we're not right in the thick of it, we may not know as much as we think. And we need to bring in the experts who actually do know what it's like to do that daily clinical work.

KS: Point well taken. This leads us to the idea of stakeholder-engaged research. What is it?

JH: The term stakeholder engaged research is an umbrella term. It covers a lot of different approaches to the idea of bringing in individuals who are going to be affected by the research to actually help can plan, conduct, and disseminate the research. So, there are various ways that stakeholders can be involved in research. They could be consultants, or they could be co-researchers, and full collaborators. In the case of a co-researcher, they help come up with research questions, help design the research, pick the outcome measure, help with data analysis, or interpretation, and even contribute to dissemination of the research results. We have found that people, family members, clinicians, other stakeholders, and people with aphasia can participate it fully as collaborators in all of these things if they so choose.

KS: Amazing. I know there are a few examples of this kind of research in Ireland. For example, Ruth McMenamin …. and also, in Denmark Jytte Isaksen is doing interesting work, and of course there is Ciara Shiggins in Australia….what about in the US?

JH: Yeah, so in other places, like in Europe, as you say, in Australia, I, you know, I think they've been a little ahead of the United States in terms of understanding that they need to bring in the people who are affected by research into the actual conducting of research. And that also brings up the point that I said, stakeholder engaged research is an umbrella term. There are many different terms and in some other countries, they also use different terms for this. But I'm using stakeholder engaged research here, because as you point out, it really is the term that's coming to the forefront here in the United States. So, in the United States, and in our all of our ASHA journals, we unfortunately have very few examples of stakeholder engaged research, where clients and family members are fully engaged collaborators are involved. There's only a handful of studies. So, it hasn't been a widely used approach in our field yet, but I think it's growing quickly.

KS: What makes you think it will grow quickly?

JH: There are three broad reasons why I think this is changing fast. First, I think the idea that people who are being affected by something – whether it be a policy, regulation, legislation – is taking a broader hold in certain areas of our lives. For example, in academics where we have student-centered learning. Second, research funding agencies in the United States are starting to value, and therefore reward with funding, research projects in which stakeholders play an important role and make a substantial contribution to the research project. The most important landmark in terms of funding agencies in the United States is the creation of the Patient-Centered Outcomes Research Institute, called PCORI. It was created as part of the Affordable Care Act in 2010 and it was charged with funding comparative effectiveness research – in other words, research that would help patients and clinicians what is the best treatment for them. Their slogan is “Research Done Differently”, and I think that captures that the research they are producing is not at all the kind of traditional research that we mentioned earlier. PCORI is funding all kinds of health research across many disciplines in innovative ways. This is really changing the landscape of research and research funding, because other funding agencies are starting to follow their lead. The third reason why I think stakeholder-engaged research will grow quickly in our field is the experience we’ve had with Project BRIDGE.

KS: I’ve been a Regional Coordinator and also a member of a few research teams for Project BRIDGE. Honestly, it’s been a gamechanger for me in how I think about approaching research. Can you tell us about how Project BRIDGE got started?

JH: Sure. So, 10 years ago, I was at a conference called the Clinical Aphasiology Conference. And for anyone who's not familiar with that conference, until the last couple of years, the only people who could attend the conference were people who submitted presentations. So, this means the conference in that sense rather exclusive, and that the audience, the people who are present at the conference, were really only researchers. So, 10 years ago, I was at this conference, listening to three days of presentations, all about aphasia treatment and I suddenly realized that we're all researchers talking to other researchers about aphasia treatment, but no one at the conference was either using the treatment as a clinician or receiving the treatment as a client. So, I said to some of the folks at the meeting, “There should be some people with aphasia at this conference. We're talking about their treatment.” And the response I got 10 years ago was, “Well, they don't really belong here.” The timing of that was one year after PCORI, became really active and started funding initiatives. 

Around the same time, we had done a project with the Sarasota Aphasia Community Group, which is a fabulous group, if anyone needs a referral in that area. They run themselves. The group is really great. We asked their members to come up with ideas about what research they think would be important. We talked to them about research, and we set them off. So, they were off on their own and we did not interfere with this. They had their own group meetings and came up with the research ideas. So, they came up with 22 ideas. 

Now most of their research, and by the way, these were really good questions. And most of them, you know, were formulated pretty close to how we would normally formulate research questions. I mean, they did a fabulous job with very little information about research. Most of their research questions were about the best treatment for different kinds of language issues. For example, “What's the best treatment for being able to produce sentences?” But then they came up with some really special questions that I don't think that you or I even despite all of our clinical experience, and our research experience, I'm not sure we would come up with these questions. 

For example, they wanted to know, “How can the speech pathologist engage the person with aphasia, not just do rote exercises, but rather connect with the aphasic as a personality, tailor the therapy to the individual needs?”

KS: Wow, that's mind blowing. And that's 10 years ago, right? 

JH: Yeah, yeah, maybe even more than that. And by the way, I said aphasic. I'm reading what they wrote, so I just wanted to let everyone know that those are their words. Another question they came up with was, “What is the effect on the person with aphasia if they do not like their speech pathologist? or ‘The speech pathologist doesn't understand the patient's needs or doesn't customize the therapy towards them?’”

Wow. I think as clinicians, we probably know, in our hearts that when we don't have a good match in terms the rapport between the clinician and client, it probably doesn't go that well. It's not the best outcome. We all know this. But we don't know very much about it from a research point of view. And then another question they came up with was “What makes a speech pathologist excellent?” These are from their point of view. It was just people with aphasia and family members coming up with these questions.

KS: Wow, well I’m certain that I wouldn’t be able to come up with those types of questions. They are so meaningful and important. They really get right down to what’s important, don’t they?

JH: Yeah. I'm really pleased that we were able to publish that paper with the founders of the Sarasota Aphasia Community Group. They were co-authors. They were equal collaborators with us in the project. That was published in 2014. 

And then two years later, in 2016, we submitted a proposal to PCORI, when I was the Executive Director of Voices of Hope for Aphasia. And although that first proposal was not funded, we got great feedback. When I read the feedback, I thought, you know, if we make this actually a little bit bigger, maybe it's going to be successful, which is not always the way you go. But we partnered with the University of South Florida. So, it was Voices of Hope for Aphasia and University of South Florida. And that was funded, and that proposal created Project BRIDGE. 

The first two years of funding allowed us to create a working conference. The goal was to bring together people with aphasia, family members, clinicians, and researchers to form collaborative research teams. One challenge with this kind of work and you know, it's this is not just in the world of aphasia, this is any health domain that uses this kind of stakeholder engaged research. So, one challenge is that researchers know about how to do research but other people who aren't researchers don't know so much about research. On the other hand, researchers are not experts on daily clinical processes, nor are they experts on living with aphasia. So, we created some video trainings, and some of them were for people with aphasia and family members to learn more about the research process, and some were for researchers about communication supports role dynamics, and plain language. Because, you know, most researchers have never been trained in doing this kind of collaborative research. So that conference was held in October 2018. And after a two-day meeting, 11 research teams were formed. And you were there, Katie.

KS: Yes! Project BRIDGE was a career changing experience for me. I had invited two of our Lansing Area Aphasia Support Group members, Chris and Ruby, to join me, and we flew down to Florida together. I think from that beginning of travelling together to a conference set a stage for something different. Actually, Chris’s sister, who lived in Florida joined us at the conference too. None of us really knew what to expect, but from the very beginning, we all knew this was different. At the conference, I remember just having my mind blown that there were over 100 people attending the conference- many who had aphasia or were family members whose lives were impacted by aphasia. One of my favorite parts was when we were in our teams, I had a team about storytelling and aphasia, and everyone was brainstorming on research questions. The training, the collaboration, the energy, it was really impactful. I’d love for you to tell our listeners more about Project BRIDGE.

JH: So, after that conference, we were very happy that these research teams were formed and there was so much energy. And I want to say that, you know, from the very beginning, before we even got funding, we had an advisory team that was made up of people with aphasia, families, clinicians, and researchers. And so, after the conference and a little bit of follow up with our teams. The whole advisory team was so excited, and we there was so much momentum, and we knew we wanted to keep Project BRIDGE going. 

So, we applied for a second round of funding from PCORI. And with the second round of funding, we created what we call a research incubator. And we were able to create four regional centers around the United States because we knew there are many people who wanted to participate, but who cannot travel across country to a conference. So, we started Project BRIDGE as a research incubator in January 2020. Our mission was to train 48 people with aphasia, family members, clinicians, and researchers on stakeholder engaged research and get them connected to a collaborative multistakeholder research team. Katie, you are one of the regional coordinators in Michigan yourself for the Midwest, so you know how busy we got!

KS: Oh yes, busy is an understatement. Suma Devanga from Western Michigan University and I were the Midwest Bridge Regional Coordinators. We had so much interest we just kept meeting with various stakeholders, holding trainings, connecting people with research teams. Definitely Project BRIDGE was the place to be! 

JH: All the regional centers were very busy. At the end of two years, we had three times as many people sign up to participate than we planned, and we trained 25% more people than we planned. Many more stakeholder-engaged research teams have been formed, and they’re studying topics like the effects of yoga on aphasia. The yoga team actually started in the original 2018 conference. And, you know, check it out, maybe we can share some links to a couple of their publications, because it's a very productive team.

KS: Absolutely , we'll put we'll put the links to that and some of the other things you’ve mentioned in the show notes. 

JH: Great. Another team that has been influenced by Project BRIDGE is aphasia games for health. There's more than one team now working on mental health interventions for people with aphasia. We also have a couple of teams working on different aspects of friendship and aphasia. One team is a collaborative team working on how to run aphasia groups. I mean, isn't that great? Get the people with aphasia to run a study on the best way to run the aphasia groups, right? It makes total sense. 

We've got lots of teams working, and we've had several different presentations at various conferences. And, you know, please stay tuned in the coming months and, and years, because more and more the work will get to a point where it'll be out in different publications. 

When I look back at the work that we did with the Sarasota Aphasia Group, and the questions that they came up with, I'm so overjoyed that many more of them are now being addressed because people with aphasia, care partners, clinicians are being involved in not just coming up with the questions but planning and actually doing the research.

KS: Powerful stuff! This is all very exciting. But there must be some challenges… 

JH: Definitely, there's definitely challenges. First of all, you know, most researchers who are active today have not been trained in this kind of research. They were not trained in their doctoral program, to sit down with people who have expertise in a completely different area. They may have been trained to collaborate with people who are more or less like them. But that is a very different game. So, one thing that I think we'd like to do in the future is help foster the incorporation of the skills needed to do this kind of research into doctoral training programs. When we talk to researchers who have gotten into this, like you. We find that this is a recommendation that many people come up with. Another challenge of this kind of work is that it takes more time. It is time consuming. It takes time to involve people who come from a different background. And it doesn't matter if they are people with aphasia, a community partner, whoever they are, when they have a different background, then an academic researcher, that's going to take more time, and it's really, truly an investment. That is an issue for this kind of work. Another challenge or risk is as there are more incentives for in involving stakeholders of different types into the research process, there's always a risk of tokenism. So, if that starts becoming rewarded in some way, like through funding, then there's a risk that, you know, stakeholders are up serving on advisory boards, so it looks like they're involved, but they're not really, truly collaborators or really involved. So that is a risk I think that we're going to run, especially in the future. 

But you know, honestly, I think that's a risk that we run in our clinical work, too. Sometimes we don't mean to be to be tokenistic. But I think when we ask our clients a general question, like, “What would you like to work on in therapy?” You know, our heart is there, we want to involve the client. But that's a question that the client is not really prepared to answer in that form. Most of our clients, probably, they never been in therapy, they don't know what therapy is in the first place. They don't even know how to start thinking about that question. If we don't take extra steps to seek out their perspective, and what's important to them, that that's a little bit tokenism too. You know, we don't mean it to be, but it really kind of is, I think. We need to ask specific questions; we need to use tools that we have. For example, Aphasia Access now has the Life Interests and Values cards, which is a fabulous way of getting the idea of clients’ priorities for therapy, in an aphasia friendly way. I think the other thing for clinicians for our clinical work is when we do ask questions of our clients, and they give us the answer, I think we have to do a better job at taking them at their word. Because I think sometimes, if the answer is not quite what we think it should be, or we're a little surprised by the answer, we're very likely to attribute insight, problem solving issues, motivation, issues, whatever it is, into that client’s response, when perhaps, that that is their answer for them. And you know, they are the experts on themselves.  

KS: Yes, that's such great perspective and food for thought. I think we really need to listen and embrace what our clients put forth with ideas for how to work on goal areas and be open to receiving the goals and the ideas that they that they have. Even if it takes us a little off road from where we typically go. How can we help them explore and develop and operationalize their ideas? And I think it is challenging, it's new territory for us as clinicians and research but I think once we're open to this, I mean, honestly, sky's the limit. And the cool thing is that we as researchers get to learn and grow alongside our clients as well. Jackie, this has been such a thoughtful and great conversation. The time has just flown by. But as we wrap up today, do you have any final thoughts?

JH: Well, you know, a lot of times we hear people say, “I'm no expert”, and Project BRIDGE has really taught me and showed all of us involved I think that a few things. Clinicians might not feel like experts around researchers, but they are experts about what they do and the clinical process. People with aphasia and care partners probably don't feel they don't feel like experts around researchers or clinicians, but in point of fact they are experts about themselves and their own lives and, and what's important, and what we can best do to fit into those priorities. So, I think that we've learned from Project BRIDGE that a researcher or a clinician who exudes cultural humility. You know, we might not feel like experts in front of clinicians or people with aphasia and care partners. So, I think we need to acknowledge, we're all experts on ourselves and our little corner of the world, what we do all day, and other people are experts on other things. And hopefully, we don't impose that onto other people and that we can just collaborate with each other. 

When some kind of research is going on, that might potentially affect something that a clinician routinely does, or how a person with aphasia is living, or the kind of therapy they're going to get, etc. We need to be willing to step up and contribute to a collaborative team. You know, probably not every kind of research in the world is a perfect fit for this kind of stakeholder engaged research. But a lot of what we do in aphasia, I think, and especially things that are important to members of Aphasia Access, would be better, more effective and more efficiently done with a collaborative team. We need everyone's expertise to change things for the better. When we do this kind of collaborative research, it speeds up how fast the research gets used in practice settings. So, it benefits people faster, because it's more effective. So, we need people to be aware of this and get involved. Project BRIDGE, fortunately, is now supported by Nova Southeastern University. So, it's not going away just because the funding ended in this year. And we are continuing to help people, whether they be researchers, clinicians, people with communication disabilities, or family members to get going on stakeholder engaged research. We still have our video trainings, And, coming soon, we'll be offering customized research team trainings. I invite everyone to please check out our website, www.projectbridge.online  You can sign up for our newsletter and we post various resources that are helpful tools.

KS: Thanks, Jackie. I'll be sure to put all of your contact information and Project BRIDGE as well as some articles on stakeholder engaged research in the show notes. Thank you, Jackie. you've given us lots of food for thought and inspiration for action during the conversation. But I also just want to say, thank you for your forward thinking and helping us in the world of aphasia get on this stakeholder engaged research train. Project BRIDGE is a great conduit for who knows what's to come.

JH: Well, thank you, Katie. And, and thanks again, for this opportunity to talk about this effort. You know, there's so many people around the United States who are participating in this, I could have spent the whole podcast just probably listing their names, but that might not be too engaging.

KS: It’s a big posse, Project BRIDGE!

JH: It's very big. Broadly, I definitely want to acknowledge them, even though I can't acknowledge everyone by name. Everyone's doing such exciting work and people are finding their own paths through this, which is what we need. I didn't say it earlier, but the idea of incorporating people living with communication disabilities into the research really springs out of my own personal experience with disability and in life. And it's such a privilege for me to meld my personal experience into things that hopefully will help others too. So, thank you very much.

On behalf of Aphasia Access, we thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org If you have an idea for a future podcast topic email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.

Resources Referenced in Episode

Project BRIDGE

www.projectbridge.online 

Email: flaaphasia@gmail.com

Twitter @ProjectBridge3

Facebook @bridgeresearch 

Instagram @projectbridge2 

Dr. Jackie Hinckley - Jh988@nova.edu

PCORI Engagement Resources: https://www.pcori.org/engagement/engagement-resources 

Project BRIDGE (and resources) on PCORI: https://www.pcori.org/research-results/2020/building-bigger-bridge-research-incubator-network-pcor-communication-disabilities 

Project BRIDGE Published Abstract: https://www.frontiersin.org/10.3389/conf.fnhum.2019.01.00030/event_abstract 

Examples of Stakeholder Engaged Research

Project with Sarasota Aphasia Community Group: 

https://www.tandfonline.com/doi/full/10.3109/09638288.2013.829528 

Team Yoga - 1: https://pubs.asha.org/doi/10.1044/2020_PERSP-20-00028 

Team Yoga  - 2: https://pubmed.ncbi.nlm.nih.gov/34797684/ 

Aphasia Games for Health: https://www.aphasiagamesforhealth.com/ 

Canadian Institutes of Health Research Patient Engagement in Research Resources

https://cihr-irsc.gc.ca/e/51916.html 

Ethics in Patient Involvement: Hersh, Israel, & Shiggins 2021 https://www.tandfonline.com/doi/full/10.1080/02687038.2021.1896870 

Goal Setting Resources for Aphasia

Live Interests Values Cards (LIV! Cards) https://www.aphasiaaccess.org/livcards/ 

Welcome to the Aphasia Access Conversations Podcast. I’m Jerry Hoepner, a faculty member in the department of Communication Sciences and Disorders at the University of Wisconsin – Eau Claire. Today, I’m joined by Becky Khayum. 

Biosketch:

Becky is a speech-language pathologist and specializes in providing person-centered care for people living with different dementia syndromes. Over the past 15 years, she has held leadership positions in rehabilitation centers, assisted living communities, memory care communities and home health environments. In 2009, Becky co-founded MemoryCare Corporation, a therapy company specializing in providing care for families coping with dementia. Becky currently serves as the President of MemoryCare. In 2020, she co-founded Cognitive Concierge, which provides digital services and programs for people living with cognitive challenges. She has been involved in research initiatives in Primary Progressive Aphasia at the Northwestern Mesulam Center for Cognitive Neurology & Alzheimer’s Disease. Becky speaks nationally to train healthcare providers and families on how to creatively apply the life participation approach for people living with dementia.

Take aways:

1. Learn about applications of the LPAA framework to individuals with dementias, including primary progressive aphasia (PPA). 
2. Learn about tools you can use to implement LPAA interventions with individuals with Alzheimer’s disease and PPA. 
3. Learn about several key authors/researchers/clinicians in the areas of dementia interventions that should serve as starting points for learning about person-centered care in dementias. 
4. Learn how to frame person-centered, LPAA goals for persons with dementias, including PPA. 
5. Learn how to document so that LPAA interventions are reimbursable for Medicare and other insurance providers. 

Interview Transcript: 

Jerry Hoepner: Hi Becky so glad to have you with me today and really looking forward to this conversation.

Becky Khayum: Well, thanks for having me Jerry I’m looking forward as well to our discussion.

Jerry Hoepner: You know, I was mentioning to our listeners that if they weren't familiar with your work, they really need to explore your work, because there's just so many important connections about the life participation approach applied to individuals with progressive diseases like dementias and so forth. We know that, at least in the Aphasia Access circles you're well known for your person-centered life participation approach for individuals with dementia, including the individuals with primary progressive aphasia. Can you share just a little bit about how you got connected with Aphasia Access and the life participation approach?

Becky Khayum: So, so I’m sure others have the same story, but I was going about my ordinary day and I get a call from Audrey Holland and she's so excited and says there is this summit, and you have to go and begins to tell me all about it, and you know, of course, said Aphasia Access you know this is new and I had you know, the summit is new and I had actually hadn't heard of Aphasia Access at that point, which was surprising considering I tried to you know base my clinical work on person centered care and I was so sad because I actually couldn't make of the first [Aphasia Access Leadership] Summit but of course, I went to the Aphasia Access website at that point and signed up, and it was startling and I was so delighted because, “Oh, my goodness, everything that I am trying to think about as the clinician and train other you know speech language pathologist on is completely captured and this one group with so many leaders in our field,” so that is how I first got connected.

Jerry Hoepner: Oh that's fantastic I didn't know that story but I kind of figured that was one of the connections, I know that I had spoken to Audrey I don't know if it was that the first or the second Aphasia Access Leadership Summit and she just spoke so she raved about you and the great work that you were doing and was just so excited that you were a part of the organization so that's fantastic and like you said a lot of people have that connection. So it was fabulous that a few weeks back to have a conversation with her again on a podcast and recognize her lifetime of just brilliant work so she's been a mentor and an encourager for so many of us so fantastic.

Becky Khayum: Absolutely 100% yep.

Jerry Hoepner: Well, you found a perfect fit and a perfect home in Aphasia Access and I, as someone who loves working with individuals with aphasia my passion is really with people with cognitive disorders, with traumatic brain injuries and so forth, as well, and I just think the life participation approach has so many applications that are much broader than aphasia and certainly we're excited to talk with you today about those applications as they're made to individuals with dementia and including your work on primary progressive aphasia as well.

Becky Khayum: sure.

Jerry Hoepner: Absolutely you you've done some great interdisciplinary work with a team of professionals about dementias I’m really interested, I have been reading your work on the care D model and just want to get your thoughts on the relevance of that model to dementia care and maybe talk us through some of the different types of dementia syndromes and their typical symptoms and the way that they present themselves I guess.

Becky Khayum: Sorry, Sir absolutely so I’m during my you know collaboration in research at the Northwest Western Mesulaum Center for Cognitive Neurology and Alzheimer’s disease, I had some amazing mentors there who developed this care pathway model: Darby Morhardt, you know Sandy Weintraub, Dr. Mesulaum, and Emily Rogalski. Really learned everything there that from them that I now know about the different types of dementia syndromes you know, and so they developed the care pathway model, you know for people living with dementia and really the model highlights that there are different types of dementia syndromes with very specific symptoms depending on where that neurodegenerative disease starts in the brain and it was really trying to promote awareness that you know Alzheimer’s dementia, with the memory loss isn't the only type of dementia syndrome and therefore there really needs to be tailored care and interventions for the different types of dementia syndromes and really, how do you adapt those interventions over time. How, you know just that huge need for psychosocial you know, support and so anyways that's the basis for the care pathway model so they you know in that paper they describe. Some of the different dimension syndromes that have very distinct symptoms, so of course we know you know Alzheimer’s dementia, with the hallmark you know deficit of that short term episodic memory loss that you first see but then, you know you may have language reading and writing symptoms that first appear and get worse over time and, as in primary progressive aphasia. Another example would be for those neurodegenerative diseases that more cause deficits in behavior and personality changes, as in the behavioral variant of frontal temporal dementia and then also another syndrome, that I don't think is as well known, is where the neurodegenerative disease starts in the occipital lobes so you have you know vision difficulties that's caused by you know cortical deficit and so that is posterior cortical atrophy so you know this, the care pathway model then describes and I know we'll talk about more of this podcast. Okay, how do you can tailor the interventions given those different types of symptoms right?

Jerry Hoepner: Right and that's a big part of that that care model right that tailoring not only to the type of dementia, but to the individual that you're working with, and as I read the article I think the word tailor comes up about 100 times.

Becky Khayum: Absolutely right and that's such a good point it's not just to the symptoms. It is to that actual individual and the way their symptoms impact their daily life so completely corresponding with the LIFE participation approach yeah.

Jerry Hoepner: Absolutely, well that's actually a really good lead into my next question. We have a lot of information out there about the LIFE participation approach for aphasia but are there differences in the way that an LP might apply the LIFE participation approach for people living with a progressive condition.

Becky Khayum: Sure, absolutely you know, so I think in terms of how you might evaluate and write goals for someone with a progressive condition. The overall philosophy, with the LIFE participation approach you know, in my experience that doesn't change too much you know you're really doing that motivational interview you're learning. How their whether it's aphasia or memory loss or behavior you know behavioral changes. How was that preventing them from participating in the activities and conversations, they want to participate in, so I feel like that that part isn't you know. Really distinctly different. What is different? One thing is in terms of how people develop these symptoms, over time, so it's obviously for many people very gradual. That their first noticing the symptoms and then they're getting worse over time, so they do have the ability to already developed some different compensatory strategies that they find or helpful too. Their care partners also find that are helpful to manage some of these symptoms so compared to having a stroke, where it's just suddenly everything it has changed so that's important to consider as you're forming your goals, but what goes along with, that is, the risk of social withdrawal, so you know it's kind of the opposite usually have someone with a stroke, you know, we have all this social withdrawal and in the beginning, but then as they're going. Through the rehabilitation process and then long term the goal is to reintegrate them, you know into the Community with those social interactions with different dimensions syndromes it's quite the opposite, you know at first there perhaps staying pretty connected and then, as things get worse. Then we're starting to see that withdrawal So how do we help to prevent that? Um I think another difference in terms of therapy is that you really need to anticipate that they are going to progress in their symptoms. And how do we anticipate those future needs, so we may or you know actually need to introduce strategies, especially compensatory strategies? Before they're actually needed and then also knowing over time that we have to be realistic in the goals that we're setting and knowing. That you know, increasing care partners support, increasing the use of visual aids and whatnot those will likely be needed for them to meet that life participation goal. The goal should not be getting them more independent, it should be understanding that they're going to need some more support so Those are some of the key differences, I think, with a progressive condition.

Jerry Hoepner: And I think that makes sense, and I know you talk a lot in your work, about the importance of counseling and education, as you know, to let people know not just the individual with dementia, or whatever the progressive condition is, but their partners that are care partners as well.

Becky Khayum: Right absolutely.

Jerry Hoepner: You know, as you as you think about those differences and I, like the way that you said from your standpoint it's not a whole lot different, right? I know that you've written a little bit about the focus on debilitation versus rehabilitation and I’m thinking about how that might apply more broadly to even stroke-based aphasia right. So, I know Michelle Bourgeois writes about the flip the rehab model, and it seems like a lot of those principles of you know, focusing on the positives and keeping people engaged are really pretty shared I don't know if you have thoughts about that.

Becky Khayum: I know, and certainly with the flip the rehab model, you know, Dr. Bourgeois has been my mentor you know I remember first attending one of her talks at ASA and of course Audrey had already told me, you know you need to connect with Michelle and I was just so energized you know and it completely changed the way that I thought about assessment in terms of really yes flipping that around and how that goes right along with the from you know live participation model because we're having more of a client directed assessment and goal formation, rather than yeah the clinician doing that yeah absolutely.

Jerry Hoepner: Well you're really natural with transitions between questions because I was just gonna talk to a little bit about goal setting, I know that you've written about this in a couple of really nice papers and one of the things I value about them is that they are so practical and so easy to digest for everyday clinicians and all of us, to be honest and you wrote a paper in 2015 with me Emily Rogalski and then he wrote another in 2015 with Rachel Wynn and talked a lot about goals for individuals with dementia or primary progressive aphasia from an LPAA standpoint and just really interested in your suggestions and thoughts about that goal writing process.

Becky Khayum: Oh, absolutely and I, we certainly already touched upon this and the last question where you know I tell us if you aren't using a person-centered kind of the flip the rehab model assessment. Overly for anyone with any type of cognitive deficit, but particularly for those living with dementia syndrome. If you're not doing the right type of assessment then you're not going to be able to formulate the right types of life participation goals. So, certainly, I think, in some graduate training and externship you know, say, a fly training I think some clinicians are very used to having to give a standardized test and a score and certainly that's where Dr. Bourgeois really says well that should come last you know really develop. You know, what are their needs? What are their goals? and then investigate what specific impairments. Auditory comprehension memory loss might be impacting their ability to meet those goals. So, the first you know suggestion is it's that purpose product mismatch if you're diagnosing someone that's great you know use your impairment, a standardized test, but you will not be able to form a life participation goal.  If you're using an impairment based standardized tests and then the other barrier, I think that we've talked about recently on an Aphasia Access panel on documentation. Was the electronic health record systems are designed for it and impairment based goal writing? I mean you just click, click, click. Okay, they have aphasia well great here's generative naming you know and whatnot if they have memory loss will are they oriented, and so it leads clinicians to automatically form and pyramid vehicles so that's where we'll talk, maybe. Later in the podcast about how can you secure reimbursement, you know for people living with a progressive condition, but as far as goal writing you know. Certainly, again very similar to anyone with TBI or stroke and just aphasia what are their goals, how did they want to increase participation in life activities? Writing out those goals with them, and a lot of times I use, who are the people you want to talk with you know, following a from where are the environments that you want to talk with people. Or that you can't participate in because of your memory loss, because your behavioral or visual deficits. And then, what are you know what specific topics or activities, you know, do you want to talk about our participate in so.  Really, I use those prompts to help write the goals and then the only real difference than is making sure that the level of care partners support and the accuracy and the use of aids and supports that it's realistic that we're not trying to say 90% accurate in Japan it so that would be the biggest tip about goal writing you gotta be realistic, especially over time.

Jerry Hoepner: Absolutely, and I appreciate carrying that through that idea of the flip the rehab model into the goal writing in I know you're a big proponent of motivational interviewing as am I, and one of the things that William Miller always says is don't ever do an impairment based assessment on your first interaction with someone and that's what we in so many times that's what people do right they begin with that and it's like. The biggest killer of relationship build building that you could you know, and when you're trying to find out what does this person want and need to do and what kinds of things will help support that yeah so beginning with those questions as a better place, then.

Becky Khayum: Yes, for sure

Jerry Hoepner: yeah absolutely. So, how would you apply the life participation approach for someone living in long term care with behavioral challenges things like that?

Becky Khayum: Certainly, yeah and I think that's a tough one, you know, and certainly one where you absolutely need collaboration with occupational therapists, social workers, counselors you know that are also involved in the individuals care and certainly also you, it is sometimes difficult to directly in you know intervene with the person, you know, in terms of this is an intro you know intervention that directly changes the person in their behaviors. It's really more we're changing the environment around them and we're educating staff members in more you know memory care communities or Assisted Living and family members to provide the environmental supports and communication strategies visual supports and certainly that's difficult, you know. Dr. Natalie Douglas, as you know, done a lot of research on caregiver support in long term care. And so that's certainly another topic, but yeah for someone with behavioral challenges in terms of utilizing the life participation approach I think Jennifer Brush. You know just another lady, you know expert in long term care, using the Montessori approach um she always says, you know a lot of times whether it's Alzheimer’s dementia or behavioral difficulties. People have a lack of a role, you know, and in some you know you have to get to the root of what's causing the behavioral challenges but oftentimes they don't feel like they have a role anymore, and a purpose in life, so I always like to start there and then also certainly do the environmental assessments, working with OT. Really training family members and staff members keep a behavior log you know let's actually see what the triggers might be so we can better think about interventions. But then again holistically will what sorts of activities and passions did they have prior to coming to the long term care community, and how can we figure out a way to modify that activity and if we allow them to participate in that? And you know, certainly, we often will see a reduction and those behaviors we don't need pharmacological management, which is so often what you know places do and just a quick example of that you know one. I met a professor, who had just been moved to a memory care community separated from his wife and was just so confused about why he was there, and you know incredibly respected expert in in so many different areas, people and so he was hitting you know people at the front desk asking to call his wife, you know every five minutes. And so, when I came in, you know they said always an artist we've been trying to get them involved in art activities and whatnot but he doesn't want to. Um so talking with the family, you know, I was able to quickly learn know people address them is Dr., you know, a professor, first of all, second of all he realizes how his art isn't the same and the quality of what he used to do so, he doesn't want to participate in that he loves to teach. That's what he wants to do. And so we were able to create a PowerPoint with him on topics art and travel that he loved to talk about, and you know he had memory loss. Actually, Alzheimer’s dementia with behavioral you know challenges related to this lack of a role and we had signs, you know that Professor so and so is our guest lecturer today, we had a letter inviting him to be the guest lecturer at the community and then he gave his lecture I think three days a week, and so it didn't completely solve all of the challenges that came up but it drastically reduced you know his behavioral challenges, because we use that light participation approach for him.

Jerry Hoepner: I love that story for a few reasons, one that you know they identified that he was an artist, but that he went beyond that recognizing that. That was even a challenge for him, because it was not the same art that he was able to produce before and just reengaging him in a meaningful way giving him purpose and that, like you said that role. That's the LIFE participation approach in terms of engaging in something meaningful and scaffolding, the environment and the people around him so that could be accomplished yeah that's fantastic.

Becky Khayum: Yes, absolutely.

Jerry Hoepner: Terrific, I’m so glad you mentioned Jennifer Brushes name, too, because she and Natalie Douglas because they've contributed so much to that context.

Becky Khayum: I learned so much from them.

Jerry Hoepner: Absolutely yeah, yeah. Okay um so I know that one of the common things that comes up in discussions and Aphasia Access panels and when we're talking about return to group kinds of context is how a person with primary progressive aphasia might best participate in and aphasia Center and or a group over time, as we know that you know symptoms are going to continue to worsen and more cognitive challenges arise, and what are your thoughts on that and how to make that work.

Becky Khayum: Yes, that that is certainly a tricky, tricky topic, you know, and again I think one that probably doesn't have one answer.

Becky Khayum: In every person may be different, you know just talking about tailored approaches it's likely going to be the case in this situation. On the first question, you know will, should they should they participate in groups or centers that are predominantly made up of people living with stroke and aphasia. Knowing that they're going to get worse over time for some people, the psychological impact of that watching themselves get worse, you know, during the groups, you know people with PPA. Most tend to be very cognizant you know of their deficits of their predicament and so psychologically, how are they doing? And I’ve worked with some people who they don't they don't, mind you know they they're just so happy to be talking with other people who have aphasia and that social interaction is so meaningful to them that they don't really think too much about the fact that maybe they're getting a little you know worse over time, but that's different you know, certainly for everyone, others, you know, certainly will get very anxious. I think, from the beginning it's good to have a good relationship with their family members as well, and just having that talk, you know from the get go, you know we just want to be open with you, this is a group that's predominantly people living, you know with stroke and just aphasia. Just knowing with PPA you know conversation can get a little more challenging over time, it might be, you know emotionally difficult for them. If we ever find that we think that they're not enjoying the group or it's challenging for them, they don't seem to be getting. The social interaction out of it that they need, and maybe documenting that you know and kind of a systematic way over time being open with the family and saying we just don't think they're getting out of this, the meaning that they did before, but the critical thing is to have other programs or groups to refer them to so it's because that's the meaning that's behind the groups who want to continue that role for them, and so that's where, if you have a local aphasia center, day programs, or whatnot that may hopefully have activities and whatnot that are stimulating and then certainly with coven I think the number of virtual groups for just people living with PPA has really grown, I found and so it's allowed people to participate in an efficient group and I certainly in the ones that I lead, I found a broad range of people with different abilities and those who have more difficulties you know their care partners help jump in so you know those certainly there's no one answer to that, but those are just some. And lastly, I guess, I forgot to mention we're so great at thinking of different types of compensatory strategies and so certainly before. Making that decision, you know that Okay, they just can't participate in the group anymore trialing a lot of different interventions, you know that we might use with someone who has memory loss or whatnot I’m trying those first before we decide that maybe they're not the best fit.

Jerry Hoepner: Right so as long as it's working keep going with it is what I’m hearing you say, but when that no longer becomes a viable option looking for other options, where they can participate, and where they have the scaffolding and support to do that.

Becky Khayum: Yes, that's usually what I would typically recommend for this situation yeah.

Jerry Hoepner: And one thing I’m thinking about the people with primary progressive aphasia that are tend to our groups here and also our aphasia camp that connection that's established for the care partners becomes really a close bond to so thinking about what the next step is for them, maybe.

Becky Khayum: that's you know that's such a good point. In the other in the PPA chats that I run a lot of them, we have a whole separate breakout room just for care partners and yeah, there doesn't even need to be a facilitator in that room, I mean they I’ve been told, over and over again, the benefit that they get from just having a chance to connect with other care partners and I’m so glad you brought that up because I do think for them meeting with care partners of people who had stroke induced aphasia would probably not, and this is just me again my personal opinion, I don't think it would be very helpful because a lot of the discussion is about the fear as things get worse, not knowing what's down the road and then for those who are further down the road what they've learned what they've tried and sharing information about that so I’m so glad you brought that point up about care partner support yeah.

Jerry Hoepner: yeah equally as important as those connections for the person with primary progressive aphasia for sure. I mean, what are the common threads that we've been talking about in this conversation, you know, are the things that you're engaging people with our real-life meaningful engagement figuring out creatively how to accomplish that, like the exam the example you gave of the teacher and so forth. I’m wondering if you can walk us through an example of applying life participation to someone with living with Alzheimer’s dementia and how that might be a little bit different for someone who, at least initially starts with more of a language focus and PPA.

Becky Khayum: Sorry sure yeah so again, you know with Alzheimer’s dementia now we're thinking about with that memory loss the short-term memory loss. How, you know again we're going to identify an activity that's important to them so just give me one example of a woman who really love birdwatching and that was something that she said over and over again, you know I am would repetitively asked her spouse, you know. I want to go look at the birds because it's been something that they've done for a long time, but just forgetting that they've already just earlier in the day, maybe gone and seen the birds, you know and not knowing whether they're going to go do that next and then having difficulty telling others about the experience, because she didn't remember what they saw what verse she saw and whatnot. So, thinking about you know really documenting from her perspective, what she wants to do and it's mainly you know would love to see the birds would love to share that with others. And then from the communication partner standpoint, just as important, was interviewing them about what is their experience what are their frustrations, you know, and for them, it was these repetitive questions all the time figuring out how to talk about you know, allowing her to talk about birdwatching with other people, so they aren't dominating that whole conversation, you know that she can remember with you know with supports and do that herself. So, really, in that case it's again, you see a lot of Dr bourgeoise work, you know it versus thinking about Okay, how do we use visual aids to help her come up with more of a routine and schedule and the answers to her repetitive questions in a memory station and a memory wallet you know so in the hall, and we created a little memory station, you know with the dry eraser, it clearly has the dates and when they're you know going birdwatching that day, where if they're going in the backyard if they're going somewhere, but then, also in that memory station really having collecting pictures and experiences to put in a memory book also I love the bird watching walks where you can just stated, and put Okay, these are the birds, I saw today, this is where they were. And then being able to use those visual aids to communicate with others. Certainly, care partner, helping to take videos and pictures, you know so they can scroll through the phone and show others and then Lastly, you know for people who are more impaired, you know and would benefit from simple bird Montessori activities, you know, and so it might be bird matching and they have so many on Amazon, like so many neat bird large picture books and Bingo and matching cards and whatnot so really kind of maybe sorting feathers or whatnot you know there's so many different activities, you could do with birds and showing them videos online pretending like you're going bird watching online they have all these virtual bird feeders now, so I think again it's thinking about here's the memory loss here is what they and their care partner once for the school and then, using the appropriate supports and carrot partner training to get there.

Jerry Hoepner: yeah, that's fantastic I, you know as you were talking through that I was just kind of anticipating thinking. You know, in some of the papers that you've written you talk about the use of photo stream and how easy, that is to flip through post photos, but that is just the kind of the antidote to you know the behavioral challenges that come about when someone isn't engaged in something meaningful. And in these are ways and you have such creative and practical ways to accomplish that like you said as a person is progressing, to be able to use the video resources that are out there to keep that person engaged. The same videos that I have my cat watch right? that's right same kind of thing like a rare bird at my birth feeder today, so that one occasionally, yeah I mean I just think that's so powerful and such a such a stark contrast to an approach, where you do decontextualize things that you know I  said I would get this in there at some point, you know the “throw out the memory books” paper that you wrote for the ASHA Leader and I just think as a mantra that's a pretty good mantra right throughout that.

Becky Khayum: Throw out the workbooks.

Jerry Hoepner: Excuse me that's what I meant, “throw out the workbooks” because right meaningful engagement is what's going to change that. So, I really just you know appreciate your perspective on that and I do encourage our readers to go to those resources that will have linked to the show notes. There are a couple of articles that really have some good, practical suggestions for exactly that kind of stuff so I’m excited for people to check that out. So, you said you wanted to return to this topic, a little bit earlier and I think I got off track, but is LPAA treatment for people with dementia reimbursed by Medicare and other insurances and, if so, how do you document that so that, how do you document status for someone who has a progressive disorder.

Becky Khayum: Sure, sure, and I think this is one of the biggest barriers, you know in across the rehab settings you know whether it's outpatient or home health or in a sub-acute you know rehabilitation facility is the way the productivity, you know expectations, you know some places, you don't get paid for an evaluation, you know some in sub-acute care whatnot and so or it's you know, compared to the treatment portion they you know want you to do a very, very quick evaluation and then more focus on the treatment. And so, really, you have to think about how to get around some of these restrictions, you have to do a standardized tests, you only have this long to do the evaluation okay well how do we get around this you know so I think the first thought is that dispelling some myths, you know Medicare doesn't require a standardized test that's a myth most companies require that but they really don't they're looking for more what's in all the electronic health record systems and narrative so there's a whole section for a narrative where you can write that motivational interview what you discovered what their goals are where they're at right now and then. There, instead of using this standard, you know goals that they have that you just click you can create your own kind of gold bank with more LPAA  goals just done a template and just copy and paste those. So, if you had a bird watching you know goal, you could easily then insert okay gardening you know instead or cooking into that and so there is a way to cut and paste goals meaningful goals into the electronic health, you know evaluation. And if you then make those realistic goals and can show progress because you're not going to be able to show progress for that long you know for someone with PPA. Okay generative naming, you know I always say you know you're working on generative naming with animals well unless they're a veterinarian or a zookeeper. You know that that may, they may not make the most progress on that goal and that may not generalize to other contexts. Rather, if you're working on words related to birdwatching and they love that you know you can then document improvement, you know with script training and whatnot. So, I getting off topic, but you know so that's how you would write the goals you can show the progress on a standardized impairment based test, if you think about it, if someone with a progressive dementia just got the same score over time, that would actually indicate improvement because they should be getting worse over time. So, and certainly using more functional tests, like the CADL (Communication Activities of Daily Living), you know, like the ALA (Assessment for Living with Aphasia) also go a long way, you have to use a test, you have to use self-test go to those you know more functionally based test um so that the answer is absolutely Medicare other insurances. Certainly, some you know united signal, or some of those you do have to get preapproval or whatnot that that can be more challenging but Medicare, BlueCross, and many of those it's all about your documentation and knowing how to write that narrative and use that goal bank of functional goals, so, in short, yes. Absolutely, you can get reimbursement.

Jerry Hoepner: So that I mean it all comes back to those goals and like I said before, you've got a couple of really good resources on goals and, as you were talking It made me think of the addition that you have on your goals in order to do whatever right that is having that in mind, is connecting the LPAA to the goal right that in order to do what I do whatever happens.

Becky Khayum: yeah, yeah exactly what, if you have a goal and it doesn't have that at the end you know, in order to participate in conversations about what birdwatching you know leisure activities, exactly is that helps it to directly target that life participation activity yeah.

Jerry Hoepner: It comes down to just documenting that right and knowing that you're not bound to any of those other specific impairment-based measures yeah agreed. Well Becky, this has been a fabulous conversation, and I hope we get to have more conversations, but just to close things out today you've talked about some really strong influences and mentors like Michelle Bourgeois and influences of Jennifer Brush and obviously Audrey and Natalie Douglas but are there any kind of go to resources that you want to let our listeners know would be a good place to start if they're thinking about LPAA with progressive conditions.

Becky Khayum: yeah, no. That's such a good question and you know off the top of my head certainly any articles, you know that any of the people that you just mentioned. Their articles just contain a wealth of information, you know about everything that we've talked about today, but much more you know and examples of therapy. You know Ellen Hickey as well, has published a lot I also forgot to mention earlier, I think the counseling component, you know to Audrey’s counseling book. Counseling for people with a progressive diagnosis is also very different than someone who may be getting better over time so having that training and counseling is also critical so any resources on counseling. Certainly, just knowing for people who come to you, and they may be, or just diagnosed with a dementia syndrome. Being aware of where accurate information is because, when they get onto the web they're doing a Google search they're joining a Facebook group for PPA, they're getting all their information from other care partners, perhaps are people living with PPA and so um yeah we recently, I’ve done, you know surveys and one of the top ones is Oh, you know is we want one place where we can go or at least a list of accurate places, so you know going to giving them the links to Alzheimer’s disease centers like Northwestern where you know, on their website that's accurate information I think those are also go to resources in terms of disease education for families and at the same time providing counseling and helping to explain their diagnosis and in an aphasia friendly way that's also a problem you know that I see come up quite a bit yeah.

Jerry Hoepner: yeah, that's a really fantastic point in a in a great way to round things out anything else that we missed or you want to add just before we close things out today.

Becky Khayum: Right. No Jerry, I think you've been very comprehensive, you know in in the range of topics we talked about today and yeah I mean my last thoughts would be, you know any speech language pathologist or other health professional you know, listening to this podcast today now hopefully learned a little bit about taking this beautiful model, you know LPAA and how it is so transferable to different types of dementia syndromes and it's certainly with knowing that especially with Alzheimer’s dementia, the prevalence is only getting higher every year of people living with these progressive conditions it's critical that our field really steps up and says we can treat help work with these individuals we're trying and then provide that the interventions that are based upon LPAA philosophy. So yes, thank you for having me.

Jerry Hoepner: Wonderful, it's been really my pleasure just a fun conversation, again, I look forward to catching up with you at other conferences and so forth, so thank you again Becky and we'll close things out for today.

Becky Khayum: sounds great Jerry thanks so much.

Jerry Hoepner: On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.

Articles & Resources:

Rogalski, E. J., & Khayum, B. (2018, July). A life participation approach to primary progressive aphasia intervention. In Seminars in speech and language (Vol. 39, No. 03, pp. 284-296). Thieme Medical Publishers.

Morhardt, D., Weintraub, S., Khayum, B., Robinson, J., Medina, J., O’Hara, M., ... & Rogalski, E. J. (2015). The CARE pathway model for dementia: psychosocial and rehabilitative strategies for care in young-onset dementias. Psychiatric Clinics, 38(2), 333-352.

Rogalski, E. J., Saxon, M., McKenna, H., Wieneke, C., Rademaker, A., Corden, M. E., ... & Khayum, B. (2016). Communication Bridge: A pilot feasibility study of Internet-based speech–language therapy for individuals with progressive aphasia. Alzheimer's & Dementia: Translational Research & Clinical Interventions, 2(4), 213-221.

Rogalski, E., Roberts, A., Salley, E., Saxon, M., Fought, A., Esparza, M., ... & Rademaker, A. (2022). Communication Partner Engagement: A Relevant Factor for Functional Outcomes in Speech–Language Therapy for Aphasic Dementia. The Journals of Gerontology: Series B, 77(6), 1017-1025.

Wynn, R., & Khayum, B. (2015, August). Developing personally relevant goals for people with moderate to severe dementia. In Seminars in Speech and Language (Vol. 36, No. 03, pp. 199-208). Thieme Medical Publishers.

Khayum, B., & Rogalski, E. (2018). Toss the Workbooks! Choose treatment strategies for clients with dementia that address their specific life-participation goals. The ASHA Leader, 23(4), 40-42.

Meet Our Newest Interviewer!

Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic communication impairments. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer

Guest bio 

Kathryn Pettigrove is a speech pathologist passionate about supporting wellbeing and connection for people with aphasia and their loved ones. She has worked in acute stroke wards and in- and outpatient hospital rehabilitation, but most loves engaging with people with aphasia in community settings, and is a particular advocate of community aphasia groups. Kathryn is a PhD candidate with the Aphasia Centre of Research Excellence (Aphasia CRE) at La Trobe University in Australia where her research focuses on aphasia groups and their facilitation. She also works as a clinical educator at the University of Sydney and serves on the Board of the Australian Aphasia Association. Her other loves include coffee, hiking, and singing with her a cappella choir.

Listener Take-aways

In today’s episode you will:

• Identify different models for community aphasia group facilitation.
• Learn about the skills required to successfully facilitate aphasia groups.
• Understand the range of roles speech-language pathologists can play within community aphasia groups. 

Edited show notes

Lyssa Rome

Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California and in private practice. I'm also a member of the Aphasia Access podcast working group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.

I'm today's host for an episode that features Kathryn Pettigrove. Kathryn is a PhD candidate with the Aphasia Center of Research Excellence at La Trobe University in Australia, where her research focuses on aphasia groups and their facilitation. She also works as a clinical educator at the University of Sydney and serves on the board of the Australian Aphasia Association. Welcome, Kathryn, and thank you for talking with me.

Kathryn Pettigrove 

Thanks, Lyssa. I'm really happy to be here.

Lyssa Rome

So what motivated you to explore aphasia groups as part of your clinical practice?

Kathryn Pettigrove

It's a bit of a story, I guess. I had been working in inpatient, acute and rehabilitation wards for the first four and a half years or so as a speech pathologist. And in those contexts, I worked pretty exclusively, almost exclusively, in impairment therapy in one-on-one settings. And it was great work, I really loved it, it was really important work. But I just really often had this feeling that I wasn't able to do nearly as much as I wanted to for people with aphasia before they were discharged back home and back to the community. And I think that's a common experience actually, that people have. 

So I decided that I wanted to shift out of hospital settings for a while and see if I could pursue some other paths that would give me opportunities to work more closely with people with aphasia. One of the first roles that I took on after that was working as a speech pathologist for the Aphasia COMPARE trial that was happening in Australia at the time, led by Miranda Rose and her team. These trials involved delivering aphasia therapy, intensive aphasia therapy, over two weeks for people with aphasia in groups of three. I know that on the Aphasia Access podcast, you guys sometimes talk about “aha” moments. The very first day that I showed up for work in the trial, with this group of three women was just full of “aha” moments for me. 

So the first one was that we started to do language therapy in the group. I have not had that experience before of delivering language therapy in a group setting. Almost straight away, I just thought it was so amazing how much more engaging it was, how much more motivating it was for everybody involved, and how much more realistic it felt to actual communication. The participants in the therapy were communicating in a way that reflected real communication, it was much more social, it was much more interactive, not just transactional. I thought, “How have I not realized this before, how much more reflective of communication group settings can be?” So that was the first sort of “aha” moment for me. 

But then after that, in the lunch break, we were chatting and getting to know each other. I learned that the three women all knew each other because they were part of the same community aphasia group. And they were so motivated to tell me about their experience with this group. They said to me that it had been the most important part of their experience with aphasia, the thing that made them feel the most normal again, one of them said to me that she had lost all of her friends after her stroke and aphasia, and this group gave her a community again. 

The group sounded amazing to me, because it had actually been set up and established and run by people with aphasia themselves. So there were a group of, I think about four people with aphasia, who had met in hospital, they lived nearby each other, and they started meeting just for coffee to catch up. Over the years, it grew bigger and bigger and more people with aphasia joined. It got to the point where I think it had about maybe 14 members from the surrounding region, people would drive an hour or two hours to come to this group. They organize everything themselves, they decided their activities and their agenda. They spread awareness of aphasia in their community. They fundraised, and with the funds they raised, they hired speech pathologists to come and do language therapy with them some of the time when they wanted that. It was just something so different from my previous model of support and rehabilitation for people with aphasia. And it was clearly so empowering and so enjoyable, and it just filled them with life. 

I just was absorbing all of this like a sponge, and really quickly, I just got very excited about community aphasia groups. So when, a few years later, I had the opportunity to work in this area for my PhD with the Aphasia Center of Research Excellence, I thought, I can't say no to this opportunity.

Lyssa Rome

What an amazing story that is. And how interesting too, that it was the people with aphasia, who were sort of shaping what they wanted to get out of the groups, and then bringing SLPs in. So I'm wondering, then, how what sparked the shift for you? Or maybe it wasn't a shift, but what sparked your interest in studying how groups are facilitated? Where did that come from?

Kathryn Pettigrove

Well, I suppose that experience was a big part of it, because although I hadn't been involved in community aphasia groups previously, I knew of them through, you know, my studies and through research that was out there. In my mind I had pictured primarily groups that were facilitated by speech pathologists. So this model was something different, that I hadn't been exposed to before. I was really interested to learn more about, but also because there's a lot of information, there's growing research all the time about how wonderful community aphasia groups are, which they absolutely are.

But there's also some more recent research, and in particular, some of the research from Lucy Lanyon’s PhD, about the fact that not only a good community aphasia groups beneficial, but groups that are facilitated poorly or less skillfully, can actually create negative consequences for people with aphasia. So it's not a benign situation. If a person with aphasia goes to a group that has been promoted as something designed specifically for them, and even there, there are challenges for them to participate and engage with other people, that can be really detrimental, especially for people with more severe aphasia. 

We want these groups to be welcoming and successful for people with aphasia, and absolutely not to create additional barriers for people with aphasia to connecting with communities. So that really sort of made me think that should be a priority, making sure that the facilitation of these groups has done really well.

Lyssa Rome

So your research led you to write a scoping review that included 177 texts. As I was reading it, I found myself really nodding along and recognizing some of your descriptions of the inherent challenges in facilitating groups, and also some of the skills required to do that job well. Can you talk a little bit about the complexity of facilitating aphasia groups?

Kathryn Pettigrove

Yeah, absolutely. You mentioned the number of studies in the review, which I just wanted to point out that that was actually really something that made me feel happy to know how much interest there is in community aphasia groups in literature. People are obviously really wanting to learn more about them, which is great. But yeah, I think there's definitely a lot of complexity involved in facilitating community aphasia groups. As speech pathologists, we know that it's not always easy to support successful communication, even with a single person with aphasia. There's a lot of things to be thinking about. So we are considering their aphasia presentation, their communication strengths and challenges, what strategies might be most or least helpful for them, and when and then hopefully, we're actually implementing all of those things, because we know that knowing those strategies is not always the same as implementing them well, with ideally, the goal of those really strong SCA strategies of revealing and acknowledging the competence of the person with aphasia. 

So I think it makes a lot of sense that those complexities are magnified when there's more than one person with aphasia present in a group or in the room. Because in the role of facilitator, you're not only trying to support successful communication between yourself and each of those members, all of those dyads, I guess you could say, but also facilitate successful communication directly between all of those members. So that might mean helping each individual person to get their message across, and also helping the other members of the group to be understanding each other person's message. If you have people with a range of different aphasia presentations and severity in the room that can present a challenge; it can be difficult. 

Then of course, that's not to mention all of the usual challenges that come along with facilitating any group. We know from other fields of research, like social work and psychology and counseling, that facilitating any group work involves challenges of managing dynamics and group cohesion, potentially resolving conflicts, trying to manage if there are very talkative or very quiet members. And that can be difficult without the presence of communication disabilities. So obviously, combining those two things, again, it magnifies some of those complexities. It's not not really surprising, I don't think that it does. 

But one of the things that we were really interested in in the scoping review was what was already known or what was being looked into about this process of facilitation, and what can make it successful. They were smaller, there was a subset of about 10 studies, qualitative studies that look specifically at facilitated behaviors that were seen to positively affect the functioning of the group and the cohesion of the group. That gave some really good foundational information for facilitators to be considering. They fell under three broad umbrella categories. 

The first one was taking approaches to equalize participation opportunities. So you know, trying to keep an eye on the engagement and the interaction of all of the members and provide space and opportunities and support for everybody to engage and join in. 

The second one was equalizing power imbalances. So trying not to really emphasize that there's one expert and one clinician, and then all of the people with aphasia are the clients who are there to have something fixed about them, or who have some kind of impairment, trying to really equalize those power imbalances. 

The third thing was equalizing communication access. So all of the things that you would expect: using multimodal communication and supported communication so that everyone has communication access to the activities of the group.

Lyssa Rome

All of those are challenges that I face, certainly. I want to ask you actually, specifically about the second one, because it is reflected, I think, in something that you write, in the paper about how SLP-led groups may inherently, if inadvertently perpetuate a power differential between the patient in need of treatment, and the expert clinician. So that quote from your paper, I think, is really interesting, because it highlights how that preserves the focus on impairment. I'm wondering what your thoughts are about how group facilitators or people running aphasia group programs can avoid perpetuating that power differential that you described?

Kathryn Pettigrove

Yeah, I think it's a really interesting point. I think it's really important to emphasize from the beginning that, obviously, speech pathologists are the communication experts. We're absolutely essential in the support and rehabilitation and advocacy for people with aphasia. We have a lot of really important roles to play. 

But I do think that we are often trained primarily to be therapists and clinicians who deliver therapy. We also very frequently are working within healthcare organizations or funding models that require us to view our progress and our performance in terms of impairment, improvement in impairment and basic function. 

I think that's changing. I do think that's changing slowly, you know, we're moving much more in the directions of social models of healthcare and the Life Participation Approach to Aphasia. But those really traditional and long ingrained systems don't change overnight, they change slowly. So often, speech pathologists are limited in what they're able to do. Clinicians will say that they feel that their service or their group service sometimes is only justifiable within their service, if it has a primary focus on improving language. 

This can, as you said, maintain that focus on impairment and trying to fix something. I think that also people with aphasia and their family members are likely to view speech pathologists in that way as well to look to them as the professionals and the clinicians who will be providing expert advice, and there is absolutely a place for this. So you know, there are groups that are going to be specifically for impairment based language therapy and groups that are about aphasia education, communication partner training, those types of groups. It's appropriate that the speech pathologist is leading the group and taking on a role of expert but that's not the only type groups that we want to see, there's a whole range of other types of groups that we want to see that don't necessarily require or benefit from such a difference in power, I guess. 

I guess the other thing that I would say is even where there is that focus on impairment or the medical model, there's absolutely lots of things that facilitators and clinicians can do to try and not create a power differential that is uncomfortable or not contributing positively to progress. 

Some of the things that we found in the review that really helped to equalize those power differences, there are a few things, but I think some of the main ones were, as I mentioned previously, always maintaining that focus on revealing and acknowledging competence of the people with aphasia that you're interacting with, regardless of whether the setting is impairment-based therapy, or purely social conversation and peer support. That foundation, being there at all times will make a really big difference, I think. 

Making room for humor, sharing humor with the clients, or the people with aphasia. You know, appropriate self-deprecating humor, having that ability to expose your own naivete in certain areas where, you know, you don't have experience in something and you're learning from the people in the group, because they know more about whatever it is, whether it's living with aphasia, or something completely unrelated, being willing to step out of that rigid role of I'm the expert, I’m the clinician, I'm in charge, can go a really long way to helping create positive dynamics within the group. 

Lyssa Rome

Absolutely. 

Kathryn Pettigrove

I think that the third thing, and I'll probably mention this a few times as we're talking is that one of the really important things is making it clear from the beginning to both the facilitators and the members of the group, what the purpose of that particular group is, because groups can have lots of different purposes and goals. If a person with aphasia is coming to a group thinking that it's going to be a social, open conversation, peer support group, but the facilitator is viewing it as a language therapy group, and is therefore exposing and correcting the errors that the person is making in their communication, that mismatch can be quite confronting, and uncomfortable. So I think making sure that everybody is on the same page about what this group is for can make a really big difference in keeping that power balance in check.

Lyssa Rome

I really recognize what you're talking about there. I can see how helpful those strategies would be in trying to address some of those imbalances that can happen. You talked a little bit earlier about alternative models for facilitation of groups. I'm wondering what some of those models are, how they might look different than the traditional model of SLP as facilitator, and what would some of the advantages and disadvantages of the different alternative models be?

Kathryn Pettigrove

There's a lot a lot to talk about in this topic, actually. That was one of the things that was really interesting about the scoping review, we saw a lot of different facilitation models represented. 

To start with, I would just say that, what I'm, you know, talking about here, and what we are talking about in our research team is not so much alternative models to the traditional speech pathology-led groups, but more additional models that can be used to extend that traditional model, because, like I was saying before, there's a really important place for speech pathology-led groups for people with aphasia, of different types and purposes. We don't want to get rid of those. 

But sticking to those only really inherently limits the group services that we can offer to people with aphasia. I mean, I think about Australia, we work primarily within a public health system and I know that in different countries the system is a little bit different. Here most aphasia services are offered within the public health system. Most aphasia groups that are led by speech pathologists are led by speech pathologists working in public health. So if every single speech pathologist in public health who worked with people with aphasia ran a community aphasia group, we still wouldn't have anywhere near enough groups for all the people living in Australia, who have aphasia and might like to access a group. 

So one thing is about increasing the numbers of groups that are available to people. But the other thing as well, is, again about the different types of groups and the different purposes that groups serve. So there's a big difference between a group that is primarily about language therapy, or a group that is about practicing functional communication strategies, versus a group that is more about peer support or a group that is simply about communication access to enjoyable group activities, like leisure activities, or conversation about current events. These groups are all quite different from each other, and probably require and benefit from different models of facilitation. So I just wanted to, you know, make that clear that it's sort of more about broadening what is available to people with aphasia.

Lyssa Rome

I like that distinction between alternative versus additional.

Kathryn Pettigrove

Yeah, exactly. Because there's a lot of wonderful work going on with aphasia groups at the moment. But we just know that it's not enough, it's not enough at the moment, and we need more numbers. I think it would be wonderful if eventually, all people with aphasia would have access not only to the single group in their area, but a range of groups that offer different services and meet different needs that they could choose from. That's a long term goal, obviously, but I think we can be moving in that direction. 

Lyssa Rome

Yeah. 

Kathryn Pettigrove

So in terms of the different facilitation models, in the scoping review, we saw a really wide range, the vast majority was speech pathology-led groups. But we also saw groups led by speech pathology students, groups, led by volunteers, groups led by multidisciplinary teams, and also groups led by peers. So people with aphasia themselves, sometimes co-leading with another professional, sometimes purely peer-led. So there were lots of combinations of facilitation models. 

There wasn't actually any research that specifically looked at comparing the different facilitation models directly and identifying their comparative benefits and disadvantages. But there were some qualitative interview studies with people with aphasia and family members, about their experiences with different groups and different models of groups. They identified some themes around some of the benefits of different types. 

So speech pathology-led groups were often really valued, because of the communication expertise that the clinicians brought, the experience that they brought, and also often an increased level of structure in those groups, especially for people with more severe aphasia. Peer-led groups, on the other hand, sometimes people felt that in those groups, they had a greater ability to actively contribute to the decision-making about what would happen in the group. Also to take on the role of helper themself. I think, in peer-led groups, people with aphasia often feel more comfortable to step up and encourage the co-members and help each other and give advice. Whereas in a speech pathology-led group, sometimes that didn't happen as much, potentially because the expectation was that the speech pathologist as the expert would offer those things. 

Again, these are just sort of general themes that were reported from the interviews. The main point, I think, is not to say that one model is better or best, but that there's a place for all different types of models, depending on the goal that they're trying to meet. 

Lyssa Rome

So following on that you write that sometimes SLPs can take on more of an advocate or a coordinator role rather than being strictly a leader. Can you say a little bit more about how it works when SLPs take on that advocate or coordinator role?

Kathryn Pettigrove

Yeah, I think that, as we've already talked about, speech pathologists, I think, are always going to have a really important role to play in supporting groups for people with aphasia—all types of groups for people with aphasia. But it probably doesn't necessarily need to be as the facilitator or the group leader sitting in the room for every session of every group that runs. I think that we want to provide that service when it's needed. But then, in situations where we might not be facilitating, it's still going to be important for speech pathologists to be available in other roles, such as supporting roles and coordinator roles. We know that the facilitators of groups, both volunteers and peers with aphasia, say that they do need support in these roles. That might be for administrative tasks, like contact lists, and venues, and that sort of thing. But it might also be for things like problem solving, if there are challenges in the group, and also as a link back to a speech pathology health service for ongoing referrals, or for them to access extra speech pathology in future if needed. So there's always going to be a role for speech pathologists to play there. 

The other thing is that we might be able to look at transitioning groups that were initially speech pathology led to become a bit more independent and peer-led, where the speech pathologist can support the group in this direction and gradually move back in their role. Because something that's really important, I think, is that we don't want to create a situation where people with aphasia are dependent and reliant on the speech pathologist in order to access group services and enjoyable services with other people with aphasia. 

So our role is going to remain crucial across all the different types of groups. But it may change over time and in different settings.

Lyssa Rome

It makes me think about how, when we were meeting in person at the Aphasia Center of California, I always loved it when group members would talk for over an hour in our conversation group or in a book group, and then they would go across the street together and keep on talking without any speech pathologist there.

Kathryn Pettigrove

Absolutely, yeah. I think that that's, you know, one of the greatest signs of success. In our role as speech pathologist, if we've enabled and connected people to do that. I just think, oh, that's the best outcome.

Lyssa Rome

Yeah, yeah. So I wanted to ask you a bit about peer facilitation. We don't see as much of that here in the US as, for example, in the UK. So thinking around the world, where is that happening? What are some of the benefits that come from having people with aphasia facilitating groups?

Kathryn Pettigrove

It's interesting, because there were peer-led groups represented in the review, but mostly, in fact, I think exclusively, only from 2000 and onwards. So they're appearing in the literature, more and more now, and I think that that's a trend that we're going to continue to see grow, which is really nice. So, as you mentioned, peer-led models have a longer history in places like the UK. So Aphasia Connect, which is now Aphasia Re-Connect in the UK, and also the Speakability groups in the UK all have been built on a model of peer support and peer leadership. 

We're starting to see it more in other areas now. So we're looking, there's some research happening right now in Australia, looking at peer-led community aphasia groups, there's some work that's been happening in some health networks in the States and in Germany and in Canada. So it is starting to pop up, which is really nice to see. 

In terms of the benefits, I think, as well as some of the things that we touched on before in terms of the members feeling potentially more empowered to take decision making roles, we also see from the literature on peer-led groups, that there's a real benefit that the members and the facilitators have that shared experience of aphasia, they can really understand each other and their experiences in a way that a speech pathologist or another person who doesn't have aphasia can't really do. 

It can be really empowering not just for the group members, but for the people with aphasia who take on facilitation roles, to step into a volunteering role or role where they have an opportunity to help and support others and demonstrate their own knowledge, use the experience to support other people, that's something that we know is really important to people with aphasia for quality of life. So that's something that can be really lovely. 

It also just offers a situation where groups and maybe not as constrained as they might be within a more traditional model, especially within a health service, they might have more freedom to to decide where they want to meet, what sorts of activities they want to do, and really take charge of those decisions, which is really lovely.

Lyssa Rome

So what about training? It seems clear that non-professionals—peers or volunteers—would need training and you found that most mentions of facilitator training describe programs for those non-professionals or non-SLPs. But what about for SLPs? You write about how there might be an assumption that SLPs would automatically be sufficiently trained and qualified to facilitate community aphasia groups. What kind of training are SLPs getting and what kind of training do you think that they should be getting? 

Kathryn Pettigrove 

Yeah, I think this is a really interesting question. Facilitator training is going to be the focus of my PhD, actually. So we could see from the review, and the things that we've already talked about today, that it's pretty clear that specialized training to facilitate community aphasia groups well is suitable and necessary. I think, you know, there are a range of complexities to consider and potential risks the facilitation isn't done well. So I think training is something that is really relevant and was advocated for, by lots of the authors in the review as well. But it is currently not something that typically happens as part of speech pathology curriculum. So there might not be any training in facilitation of groups of any kind or of facilitation of groups for people with aphasia and students, especially more and more these days, might get clinical placements in these areas, but they may not. So there's certainly not a blanket level of training and education that is provided to speech pathologists as part of their qualification. 

We also know from previous research and surveys of speech pathologists that speech pathologists often feel that their level of knowledge and skill and experience with group services is a barrier for them. This is something that not all speech pathologists feel confident to do and feel that they have the skills and knowledge to do. So I think it's something that is probably a little bit of a gap at the moment in speech pathology training. 

I think that there are certainly speech pathologists who are getting really nice training in this area. If they're lucky enough to have a clinical placement where they're working with aphasia groups and they have a clinical educator who's giving good training in this area, or if they work in a center that provides training for staff in order to run aphasia groups. There's certainly some, some great training happening out there, but it's definitely variable depending on where you are and what your experience is. 

So in terms of what's happening in training and what should happen in training, in the review we saw a range of different things. Pretty much all training for facilitating community aphasia groups, included information on what aphasia is, especially if it was not for speech pathologists and on strategies for supporting communication in the setting of aphasia. 

Sometimes it included things like the underlying purpose or philosophies underpinning the group services, but often it didn't include that information. Sometimes it included training about general principles of group cohesion and group dynamics. There are a range of other things, and I think all of those elements are really important, but they were provided in some situations and not others in different combinations. So a big mixture and in some settings, all of the above were happening. But that was much less common, definitely much less common. 

I think something that I think about as well is that I, I think I mentioned this before in the Australian context, we work, currently anyway, much more on a public health model of service for aphasia. We don't have currently a large service of aphasia centers that are staffed specifically for this purpose and that work on a fee-for-service model. So in contexts like that, I think it's even more important that speech pathologists have access to training, so that in that context, they can feel confident and skilled to support groups like this to come about. 

So that's something that we'll be looking at in my PhD research with my team. We'll be looking at some training for speech pathologists about facilitating these groups, understanding the roles of different groups and, and where they sit in services for people with aphasia, how to facilitate them well, but also how to support other people to facilitate them who might not be speech pathologists, volunteers, or people with aphasia themselves. So hopefully we'll have more to share on that topic in the coming months and years. So, maybe we'll talk again some more about that. 

Lyssa Rome 

I would love to, it sounds really important and really interesting. I look forward to reading your research down the road. In talking about facilitation of community aphasia groups, it's been very validating to hear you describe what you found in terms of the nuances of that work. And also really exciting to think about the possibilities for SLPs to sort of deepen the way that we are facilitating groups and that we are supporting groups more broadly. Do you have any last thoughts that you'd like to share with our listeners about that? 

Kathryn Pettigrove

I feel like I could talk about this topic all day. I just think that groups are so wonderful for people with aphasia and I saw that first hand, not really until several years into working as a clinician, and I think that's probably the case for lots of people. So I think the one thing that I would really say to speech pathologists listening is if you don't currently have any groups happening in your area, have a think about whether you might be able to get something up and running, because they're just such a beautiful way to connect people with aphasia to each other. We know that this is something that people with aphasia say is crucial and so important and meaningful for them in their experience of living with aphasia. There is some, you know, some good research out there that gives some good guidance and information about the facilitation skills that can support good groups. So definitely check that out. I think the best thing is to get started and see for yourself how beneficial they can be. 

Lyssa Rome

I really agree. It's been a pleasure talking with you. Thank you, Kathryn, for sharing your expertise with our Aphasia Access members. 

Kathryn Pettigrove

Ah, thanks, Lyssa. It's been a real pleasure talking to you. 

Lyssa Rome

So on behalf of Aphasia Access, we thank you for listening to this episode of the Aphasia Conversations Podcast. For more information on Aphasia Access and for our growing library of materials, go to www.aphasiaaccess.org. If you have an idea for a future podcast series topic, email us@infoaphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.

References and Resources 

Pettigrove, K., Lanyon, L. E., Attard, M. C., Vuong, G., & Rose, M. L. (2021). Characteristics and impacts of community aphasia group facilitation: a systematic scoping review. Disability and rehabilitation, 1–15. https://doi.org/10.1080/09638288.2021.1971307

​​Twitter: @Kathryn_SLP

Aphasia CRE:

Website: https://www.latrobe.edu.au/research/centres/health/aphasia

Twitter: @aphasiacre

Facebook: aphasiacre

Australian Aphasia Association:

Website: https://aphasia.org.au/

Twitter: @AusAphasiaAssoc

Facebook: AustralianAphasiaAssociation

For today’s episode, Ellen Bernstein-Ellis, Program Specialist and Past Director for the Aphasia Treatment Program in the Department of Speech, Language and Hearing Sciences at Cal State East Bay, speaks with Melissa Richmond and members of the Slow Road To Better (SRTB) podcast group from the Stroke Comeback Center (SCC). This show celebrates Aphasia Awareness Month and is honored to feature 5 individuals with aphasia who are consumer advocates through their work on the Slow Road to Better podcast.

Guests:

Melissa Sigwart Richman, MS, CCC-SLP is a speech-language pathologist with 30 years of experience working in rehabilitation with stroke and brain trauma survivors.  She holds degrees from James Madison University and the University of Maryland, College Park.  Her career has included inpatient and outpatient rehabilitation, long-term care, home care, community-based and virtual settings.  Melissa served as a Senior SLP on the inpatient Stroke Recovery Team for Medstar National Rehabilitation Hospital for over ten years and in 2006 became the Program Director for the Stroke Comeback Center in Vienna, Virginia.  During her tenure, the organization grew to three locations starting with a handful of groups to well over 50 classes per week utilizing a life participation approach. In 2019, Melissa moved to the Outer Banks of North Carolina and started the Virtual Stroke Comeback Center which has continued to grow and thrive.  She continues to focus her energy on improving the lives of survivors and families living with aphasia, with the primary focus of helping them get back to the business of living.

Slow Road to Better Podcast Team Members: 

Kitti Tong: At the age of 27, Kitti Tong earned the CEO’s Exceptional Performance Award at Choice Hotels – the highest recognition in the company. A data analyst, growth strategist, and event facilitator, she founded a Toastmasters Chapter in Maryland and co-chaired several committees for women’s leadership and human rights. Kitti’s life was changed forever when she was struck by a car walking home from work, sustaining a severe traumatic brain injury. With determination and grit, she relearned to walk, talk and participate in life. She has founded S.A.Y. Younger Aphasia on YouTube to help create awareness of this isolating condition.

Kitti's YouTube channel is: S.A.Y -- Younger Aphasia Group - YouTube

Pat Horan: My name is Pat Horan, I was a Captain in the Army. In 2007 I was wounded in combat serving in Iraq. After my injury I couldn't talk, read or write. Over the past 10 years the Stroke Comeback Center has helped me improve my writing, reading and speech more than I could have ever thought possible. Today I am a proud father of a new son and an adopted nephew. My continued recovery will help me be a better father and husband. 

Erin Adelekum: Erin's Instagram is: stroke.mama

Chris Vincent

Dante Thomas

Listener Take-aways

In today’s episode you will:

Edited show notes

Ellen Bernstein-Ellis  00:54

Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Ellen Bernstein Ellis, Program Specialist with the Aphasia Treatment Program at Cal State East Bay in the Department of Speech, Language and Hearing Sciences and a member of the Aphasia access podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. 

In recognition of June being Aphasia Awareness Month, I'm excited and honored to be today's host for an episode that features the five members of the podcast team from the Stroke Comeback Center located in Vienna, Virginia. They are joining me today along with Melissa Richmond, the speech pathologist who produces the show. The Slow Road to Better has launched over 100 episodes that offer authentic and engaging discussions about how to adapt and live well following brain injury or stroke. They share what keeps them all on the “slow road to better”. 

Welcome everybody! And I'm going to start with Melissa's introduction. And then I'll ask the podcast members to introduce themselves. 

Ellen Bernstein-Ellis  03:21

Melissa, thanks for joining us today. And now I want to get the rest of this show on the road. But in this case, it's actually The Slow Road to Better. I want to have the team introduce themselves. I'm excited to have the podcast team here today. I was wondering who wants to jump in first with the introduction? Because we got five of you. Any volunteers? So Chris, let's start with you. And could you share with our listeners, what was the cause of your aphasia?

Chris  03:48

So I was on the motorcycle on the way to a fire meeting. And some guy didn't see me and ran into me.

Ellen Bernstein-Ellis  03:58

So traumatic brain injury. 

Chris  04:01

Yeah, absolutely. So 10 years, and I only said, “yes”, “no” and four or five curse words, which is important for firefighter, and military and everything. And then obviously I am talking, walking everything. 

Ellen Bernstein-Ellis  04:19

Thank you, Chris. And how old were you when you had this brain injury? 

Chris

Twenty seven 

Ellen Bernstein-Ellis  

And how long have you been living with aphasia? How long ago was that? 

Chris

10 years.

Ellen Bernstein-Ellis  04:31

10 years? Okay, and Chris, one more question. How long have you been a podcast team member?

Chris  04:36

Since the beginning? So six, seven years?

Ellen Bernstein-Ellis  04:40

Six or seven years? I saw Melissa holding up six too, so 6-7 years. All right. So you’re an original team member?

Chris  04:47

That's correct.

Ellen Bernstein-Ellis  04:48

That is fantastic. Okay, and who goes next? Kitti, are you calling out somebody? Oh, Kitti is volunteering.

Kitti  04:56

Kitti, I’m Kitti and three years ago I was hit by the car. But Chris and I, and I was 27. Yeah. And

Ellen Bernstein-Ellis  05:10

That was three years ago. And how long have you been the podcast team member, Kitti?

Kitti  05:15

Two years, two years and now.

Ellen Bernstein-Ellis  05:18

Okay. All right. Well, thank you for starting off. And do you want to call somebody next for me? 

Kitti  05:27

Oh, wait, wait, wait. 

Ellen Bernstein-Ellis

What else?

Kitti

Yeah. I was silent. But now I'm better. Okay. Let’s call Pat.

Ellen Bernstein-Ellis  05:32

Thank you, Kitti, Pat, what was the cause of your brain injury? You've shared that with us that you're a veteran.

Pat  05:42

Yep. I'm Pat Horan. I got hurt when I was in Iraq. I had been there for a year and for no good reason, I got a shot in the head. And that was 15 years ago.

Ellen Bernstein-Ellis  05:56

And how long have you been a podcast member?

Pat  05:58

I think I’ve been doing it the whole time also.

Ellen Bernstein-Ellis  06:00

So two original members, right? Kitti is a new kid on the block, I guess for podcasting. Okay, Pat, thank you so much. And I see Erin waving her hand. So you are next. Erin. Welcome. And what's the cause of your aphasia? How did that happen?

Erin  06:19

So, I'm Erin. And IG (Instagram) knows me as strokemama.mama. I was 39 When I gave birth to my daughter. And nine days later, I had a stroke. 

Ellen Bernstein-Ellis  06:37

How long ago was that again? 

Erin

Ellen Bernstein-Ellis

Okay, so you have a two year old.

Erin  06:42

One and a half. She turns two in July.

Ellen Bernstein-Ellis  06:46

Beautiful. Okay. And Erin, how long have you been part of the podcast team?

Erin  06:50

I'm going to come on my year in, maybe, October or August? Or September?

Ellen Bernstein-Ellis  07:01

All right, close enough. Close enough. So you're kind of new like Kitti. Okay, thank you so much. Thank you, Erin. And last, but certainly not least, is Dante then. So Dante? What was the cause of your aphasia? Can you share that with our listeners?

Dante  07:17

It's a long time, but I got my pills and stroke. And about five years and I'm improving and words and is really good. So yeah. 

Ellen Bernstein-Ellis  07:33

Thank you for sharing that. And how long have you been a member of this podcast team? Oh, one

Dante  07:40

Oh, one year.

Ellen Bernstein-Ellis  07:41

About one year? Okay. 

Well, I want to thank all of you. I am honored to be here. I am a huge fan. I have been listening to your episodes. And I am just so impressed. I'm just so impressed with what you've accomplished. And we want to talk about that today. Before we jump into your experience, I'm going to circle back to Melissa, just for a minute. And Melissa would you share with our listeners? What inspired you to do this? How did this happen?

Melissa  08:09

We were actually inspired by a physical therapy student. I was asked to give a lecture at Marymount University to help the physical therapy students understand what speech pathology was and what their role is, as part of a rehab team. And I brought some members from the Stroke Comeback Center with me to tell their story about living with aphasia. The person, his name was Jimmy McVeigh, said I think you all should do a podcast. And he had podcasting and radio in his background. And he said, I will help you, which he did for a few months. And we first had our podcast out on his feed, which was called the PT podcast. Then, you know what happens with students. They graduate and get jobs and real lives. So he didn't really have the ability to help us anymore. And so the members really enjoyed the podcast and wanted to keep it going. So we just picked up where we were, and use what we had, and started our own feed with the help of some friends. And so in 2017, I guess we officially kicked off The Slow Road to Better on our own RSS feed.

Ellen Bernstein-Ellis  09:39

Wow, you kind of just rolled up your sleeves and did it, I think.

Melissa  09:43

We did. I always tell people, like file it under things they did not teach me in grad school. Okay,

Ellen Bernstein-Ellis  09:50

Okay, share with our listeners who might be thinking “maybe we can do this too” what do you do to set up an episode?

Melissa  09:58

Really, what I do is support a conversation among members of The Stroke Comeback Center. The way that I see it, my job is to manage the logistics.  We record on Zoom. I get us all together. And most of our conversations are really just authentic conversations-- things that come up with the members who are really doing their best to live well with aphasia.

Ellen Bernstein-Ellis  10:30

I was just going to ask what really makes a good show topic. I think that's what you're kind of referring to here.

Melissa  10:36

Yeah, authentic conversations feel like stuff. And some of it is serious. Some of it is people dealing with loss of independence, or they feel like their relationships are different, power is different, financial issues. And sometimes it's, I really want to wear my cute shoes and I have this stupid brace. Or, oh my gosh, I'm trying to wear my contacts and I have to put them in with my weak hand. We had a long conversation about how do I shave my armpit on my weak side? You know, so?

Ellen Bernstein-Ellis  11:12

Wow, the real stuff or Yeah, stuff.

Melissa  11:14

The stuff that friends talk about when they get together? Those make the best conversations. We don't plan. We don't fret. I don't give out the questions. I pretty much turn it over to the members, and they take control.

Ellen Bernstein-Ellis  11:29

Sometimes you have guests and the podcast team asks questions. I listened to the episode this week with a physical therapist, and that was fabulous. Hearing people share their questions about their experiences and, and really very empowering. I mean, just being in charge of your own life and your own rehab. That's, that was my takeaway. 

Can I ask who is a good candidate to be a podcast team member? What are your thoughts about that?

Melissa  11:56

From my perspective, any survivor with aphasia, who is willing to put out their honest, authentic self---the good, the bad, and the ugly, I don't think it's fair for podcasters to come out and say all the good stuff like I'm doing so great. Even though I had a stroke, life is great. It's not. There are a lot of days that really suck. And there are a lot of days where we shed some tears during this podcast, and we've had a lot of failure. I think it takes a lot of courage and a lot of grit to be willing to come on to this podcast and put your true self out there that I really wanted this, but it was a fail.

Ellen Bernstein-Ellis  12:45

I'm just gonna say that that honesty, that grit, that resilience has shined through every episode I've listened to so far. That's why I become such a big fan. 

And one more question, Melissa, then let's open it up to the whole team. And that is, what benefits have you seen for the members from being part of this podcast? What are the benefits of this podcast? I'm going to be asking the members that in a moment.

Melissa  13:11

I think some of the best outcomes have been the survivors being able to share their story with other survivors. Being able to give back to a community. Being willing to put themselves out there and say, “If I can do it, you can do it.” Building a bridge of hope. Which is what we say in our intro, and that's really what our members want. I think they understand that not everybody has a Stroke Comeback Center. And I think they understand what this center and the impact of having friends with aphasia has done for them. And they want to do that for someone else. So I think that's probably the biggest outcome. 

And really, it's a great way for the members to track their communication progress. And I say it all the time. Go back to when you started listening, and listen to your communication. And then listen now. Because when I edit, which is really what I would say is my most significant role is, I am the editor and the uploader of all podcasts, is that it's a record of their progress. And it's amazing. It's really a way for our listeners to go “Well they sound great now, you know, they clearly didn't have that much aphasia.” Go back and listen six years ago and see what it sounds like, because I don't try to make people sound like they don't have aphasia. What would be the point of that?

Ellen Bernstein-Ellis  14:54

You just mentioned your opener, and the first time I heard the show, I was completely reeled in by that opener. It just hooked me because, first of all, it starts with someone saying, “Come in, come on in, come on in.” And that's exactly right. You are welcoming people into your lives with aphasia, and you're saying, “I'm here. And I'm going to share.” I mean, that was just so empowering. I'm going to play that clip. It’s engaging. It's collaborative. Right away that that opening captures everything. So let me play it for the listeners. And then we'll come back again.

OPENING ROLL OF SLTB PODCAST PLAYS

Ellen Bernstein-Ellis  16:40

I hope the listeners enjoyed that clip as much as I have. I just want to say it's fabulous, every part, every line, but maybe I have a favorite piece. And that's when Pat* says something like, you know, aphasia isn't going to go away. But we want to crush it. And I think that's what happens with every episode, that determination, just to crush it.  (Note: original recording says “Chris” instead of “Pat”, but the correction is noted later in the recording.)

So with that, let me throw out a question to this fabulous team. And that is what do you all think is one public benefit? What do you think listeners can take away from this? And what's a personal benefit of the show? So if you could just to speak to either a public benefit or a personal benefit that you you have experienced? Do I have a volunteer? Is Kitti going to call on somebody for us? 

Erin  17:37

It’s Erin. I think the public benefit is seeing how funny, or sarcastic, or you know, kind, or the troubles that aphasia survivors go through and realizing that they are just as funny, or even more funny, than when they didn't have aphasia. And then I think the personal benefit is having a group that I think, the personal benefit for me is having a group of aphasia people to talk with. And I know that I am so much better, you know, the aphasia is so much better than when I first started the podcast.

Ellen Bernstein-Ellis  18:43

That's beautiful. So it's really the sense of camaraderie. And it's also the sense of sharing with others. You're not alone, just normalizing this whole thing. Erin, thank you, and who else wants to share any response to this first question? I see Kitti raising your hand.

Kitti  19:03

Hi, I’m Kitti.  In my podcast, I'm full funny, half philosophy, I'm half joking, I'm half serious.  And now, before I was still me, and now I'm still me. Just mindset you know, just mindset.

Ellen Bernstein-Ellis  19:24

So being yourself is part of the maybe public benefit because you can let people see who you are. You're a person you're still you. What's been a personal benefit for you Kitti?

Kitti  19:35

I'm still me like before and after I'm still me, you know what? Change, I have aphasia but I am still me. Before I was speaking convention. Now, I am still convention. You know?

Pat  19:51

I think it's really, like

Ellen Bernstein-Ellis  

Is this Pat?

Pat

Oh, sorry, I am Pat. Yeah. I was also Pat, the one that said--I'm sorry, I'm thinking right now, I shouldn't think—It wasn't Chris that said it. I said I was the one who said, “I'm the one, I would crush.” 

Ellen Bernstein-Ellis  20:09

Oh, I got that wrong. 

Pat  20:11

Yeah, even you it happens to you.

Ellen Bernstein-Ellis  20:14

Absolutely, oh heaven’s, yes.  So Pat, thank you for that. So we'll put the tribute where tribute’s due. Sorry, Chris. I'm gonna toss that one over to Pat. So Pat, what's your,

Pat  20:23

I just think it's like, like Kitti was saying, like how she's doing the YouTube and stuff. But like, she went last year--I think, she went down--she went to Vegas to go talk with some other people, you know. And I've been, you know because I got hurt so many years ago, but I've got to go to other colleges around here. I used to have a working dog and I, (unclear) dog, they asked me a couple times to go and we'd go and talk to--I can't remember where we went, somewhere in Maryland. And there was like, over two or three thousand people there that I had to talk with about my dog, Wilson. And it was funny because Wilson was perfect. Like one time, it was really great. We went to, Chris what was that name of that college we went to? Marymount….

Erin  21:22

Chris and you… went to Marymount?

Pat  21:24

So we were there, was that for PT maybe? And we did—that, that was, sorry Chris, her name was Kim. And then me. I don’t know, there's a bunch of students there. And Melissa was there, but  she told us that we weren't allowed to talk, or she wasn't gonna talk, no matter what. 

Ellen Bernstein-Ellis  21:49

Oh, so it was all on you guys. So Pat, are you telling me that part of the benefit from this podcast is that you've really gained kind of the confidence to go out into public and share these messages? Do you think that's been one of the benefits of working on this podcast? Or are you just saying that it’s a sense of advocacy that you've really become even a stronger advocate?

Pat  22:11

So that's the problem for me is, I don't know big words.

Ellen Bernstein-Ellis  22:15

Absolutely. So you stand up for yourself, you're empowered. Pat, I think you're very empowered.

Pat  22:21

Or, just like the movie, I'm just “living the dream”, you know. (laughter) I want to go out and have fun. I want to enjoy—I don’t want to get into this whole thing with me, but I'm excited that I lived, you know. And so I'm just, like to get out there, you know, when I can talk with people and talk and stuff. And I'm not perfect. I'm not, I'm not the king of the world. I'm not the best, but I just want to help other people. That's what we started years ago.

Ellen Bernstein-Ellis  22:47

So that's one of your motivations, then. You're just here to help others too, so a real sense of altruism, and just having that role of a mentor and a helper. That's great. Thank you. 

Dante or Chris, do you want to jump in on this question at all? What's the public benefit or a personal benefit of this podcast?

Dante  23:09

Dante. The beginning talk, and very little, but then more and more. Sentences and just driving and more and more and more. Like, the mall and talk, and just nothing, and I gain and more and more. So yeah, it's definitely improving. And just more and more and more and group and, and yeah, just flew in and just really talk, and is leaps and bounds and expressing and laughing and…. 

Ellen Bernstein-Ellis  

That's beautiful, Dante.

Dante

Definitely not sound it out, but just expression and reading and on YouTube. Just more and more and more expressive. Just talk and let me know, and it's definitely getting much better.

Ellen Bernstein-Ellis  24:12

And that's an important message for listeners to hear. I think that people continue getting better. There is just a better. I think that's so important. In your last episode, you guys talked about that whole, I call it the “P word”. When people are told there's a plateau, is the “P word”. You know when you. are told that you're gonna get better for six months and stop. And you guys kind of blow that through the roof and say, “No, we keep getting better year after year, because we're working at it.” So, Chris, is there something you want to add to this part of the discussion about a public benefit or a personal benefit of the show?

Chris  24:52

Yeah, I mean, so in the world, you have aphasia or TBI. And a lot of people don't have what we have. It kinda--Melissa shows us what the USA and then all over the world. I mean, there's a lot of people that have aphasia or not, and just listening and..

Ellen Bernstein-Ellis  25:28

Right, your show has had over 50,000 downloads. And we know there are over 2 million people with Aphasia just in the US, and that doesn't

 even touch the rest of the world. So, Chris, you're saying it gets the message out there. And as Melissa said earlier, there's not --not everybody has access to an aphasia center like you guys all have. Access to your fabulous Stroke Comeback Center. So thank you, Chris, way to kick this off-- your discussion. 

And I was wondering if you'd be willing to share any important lessons with the listeners about your podcast experience? You know, what, what type of insights or good lessons or hard lessons have you had with being a podcaster? Your humor is definitely been a good lesson for me, you guys can just let it roll. And that's a part of the magic, I think, is the humor you share with each other. And you call each other out? That's for sure.

Chris  26:22

Yeah. laughing And then there's some days that are not happy. It's sad. And it's just… and I think there's laughable moment on each episode. Some are very touchy. But you know, I think that is podcast. And that's what the benefit of listeners. We are not happy all the time.

Ellen Bernstein-Ellis  27:03

Yeah, that's very real. And it sounds like this is really storytelling. It's sharing your life. It's the lived experience here. And that's what you're bringing to the listeners. Any other important lessons that you guys can share with us? Kitti?

Kitti  27:19

Hi, I'm Kitti. For someone say that I was crying, or I was joking, or I just didn't make sense. And I said, “Do you know what I mean?” And then Melissa said, “I don't (know) what I mean. (Laughter) You know, just okay. One second. Okay. I'm feeling like that we are podcast. Feel like that, what is aphasia? What is different? And what is my benefit? Not me. Not Chris. Not Dante. Not Ellen. Not Pat. But what is most me? Do you know what I mean? 

Ellen Bernstein-Ellis  

Help me with this.

Melissa  28:09

This is where I have to say no, I don’t know what you mean.

Pat  28:12

I think this is what you might say, Kitti, just let, if I'm totally wrong, you tell me. But like when you go to see any PT, OT, or speech or whatever. And I've had some of these people that are for speech, were like, you know, this and that, you got to do this. And then, just like, but wait, you're doing the same thing with all the, what the people that have a, you know, a stroke or a TBI. And you're like, wait, you can't tell everybody the same? We're all different people, all of us, you know. So? Is that what you're trying to tell Kitti at all? Or am I totally wrong?

Kitti

Yes.

Ellen Bernstein-Ellis  28:54

And nice job, Pat. And Kitti. Are you also saying that sometimes because it's not about any one story or any one person, but it's the bigger piece of everybody helping each other that you…

Kitti  29:13

Yeah, like we are human. The normal people is human. We are human. We are both human, not like disability, but different ability, you know? 

in-Ellis  29:26

So each of you are telling your story in your own way. 

Any other important lessons that you would want the listeners to understand about this podcast experience? And if not, I have other questions, not to worry, I don't run out of questions.

Melissa  29:40

I would throws this out there that occasionally, members get a little blowback, primarily from their family. As I said, we do have the ability to edit. We will have conversations that we get to the end of and somebody says, “You know what? You can't put that out there.” And I'm okay with that. And I don't. But sometimes people do share things that they don't think their families or anyone's going to really respond to. But they do. And sometimes, a lot of times, it's just really positive. I think their families hear them have a conversation just amongst friends. And they're like, “Oh, my gosh, I didn't even know it could sound like that.” Sometimes, families get their knickers in a knot a little bit about someone's perception of a situation. And then I get an email that says, “That is not how that happened.”

Ellen Bernstein-Ellis  30:42

Okay, so that's an important lesson. That's something that could happen as a podcast team. Okay. All right. Thank you, Melissa. Erin, you look like you want to say something or you.

Erin  30:52

So when we have a guest speaker, Melissa tells us, you know, if the guest speaker wants us to ask questions, or the group have questions for them, I will ask. But I think it's just, you know, what did Dante say? “A free for all?” No.

Chris  31:21

So honestly, that is 99.9%. (Laughter) Free-for-all.

Ellen Bernstein-Ellis  31:28

All right, everybody seems to respond resoundly to free for all. Yes! In the best sense of the word. So it's spontaneous and it's authentic. And it seems to me that you are learning from each other, as well. And that you kind of call each other out to be your best. I mean, that's what I'm seeing. Do you guys agree that you learn from each other in this situation?

Chris  31:54

Absolutely.

Dante  31:56

No Filter? (Laughter)

Ellen Bernstein-Ellis  31:59

What was that? Dante?

Dante  32:00

No Filter. No, no plan, nothing. Just, I'm sorry, I'm Dante. Just the plan, the question, just wing it. And expressions, and what did he say? Or just different groups, and just no filter? And you say it, and it gets better, but still more and more and more, just wing it.

Chris  32:32

And so the funny thing. I'm sorry, Chris, by the way. So Melissa will tell us, “Hey, this is what we are discussing.” And then 30 minutes later, that is not at all (laughter) what is the topic. Now it is so different from the topic. And then 30 minutes later, you are talking about, “What are you doing for lunch?” Or you know, or the tying the shoes or something like that. But that's one on my part anyway. But it's so random. That, that's what we love, because it is whatever I feel that day. That's it.

Erin

Yeah!

Pat  33:35

I don't think it's 30 minutes. I think it's about two or three minutes.

Ellen Bernstein-Ellis  33:39

It goes so fast. It feels like the conversation goes so fast.

Erin  33:42

Melissa will get us back on target.

Ellen Bernstein-Ellis  33:45

Target. Uh, Melissa, we'll get you back on target sometime. 

Group: (Laughter; “eh” verbalization meaning “not so much”.)

Ellen Bernstein-Ellis  

Okay. We have just a few minutes left, talking about two or three minutes, it feels like it's been two or three minutes. But this is June, which is Aphasia Awareness month. And I was wondering if any of you have any messages you want to put out there as we celebrate June as Aphasia Awareness Month? Any message for the listener about that?

Chris  34:13

So, Do More 24… 

Dante

Slide in...slide in. (Laughter)

Ellen Bernstein-Ellis  34:18

Oh my gosh, I think that was quite a transition. Everybody's endorsing that. And that is…?

Group (laughter)

Chris

Oh yeah,

Pat

It’s too late.

Melissa  34:24

It's gonna be in May, Chris. It's gonna be too late. But, good try. 

Chris

Damn it! 

(Group laughter and some good natured pandemonium.)

Pat

Different math. It’s different math.

Ellen Bernstein-Ellis  34:38

I've never had swearing on the show before, but that's okay. It'll be the first.

Pat  34:43

Different math.

Ellen Bernstein-Ellis  34:43

Chris, I think you're saying it's never too late to support the Stroke Comeback Center. And that's just a great example of seizing the opportunity for advocacy. And I thank you for that. What else for Aphasia Awareness Month? What other messages can we share?

Kitti  35:01

Maybe, if your friend just say, “Hey, do you know what is aphasia mean?” Just teach people, one friend, or five friends…

Ellen Bernstein-Ellis  35:17

One person at a time, if that's what it takes. 

Kitti

Yes.

Erin  35:20

And this is Erin, stroke.mama here. M-A-M-A

Ellen Bernstein-Ellis

Excellent.

Kitti  35:27

Is SAYyoungaphasia channel. YouTube. Check it out.

Ellen Bernstein-Ellis  35:31

You guys are getting it out there!

Erin  35:34

I want to say, if you have a friend with aphasia, and you go to dinner, or a group, you know, party with them, don't let them---include them in the conversation. I take a long time to speak. But I have something to say, you know, and I just want to be included. Well, I don't have a problem, because I will stop the conversation if I’m not included.

(Laughter)

Ellen Bernstein-Ellis  36:18

I just want to say this is an amazing, amazing team. I am so honored that I got to have conversations with you. And I am so appreciative, as a speech language pathologist, of how you are helping other people with aphasia. Not only people with aphasia, but I think the family, the community, and I hope other speech language pathologists who listen to this and get a sense of how important it is to give voice, to allow people with aphasia to tell their story, and to tell it in a real way. And I want to thank you for that. And I really treasure, you have something special here--your relationship with each other, and your positive belief in yourself and each other. So thank you. Thank you again, thank you for sharing your expertise with Aphasia access, and with all our members. 

So on behalf of Aphasia Access, we thank you for listening to this episode of Aphasia Conversations Podcast. I'm going to tell Melissa that if she wants to collect any of these handles that have been shared today, I'll put them in the show notes. For more information on Aphasia Access, and to access our growing library of materials, go to www.aphasiaaccess.org. And if you have an idea for a future podcast series topic, email us at info at aphasiaaccess.org And thanks again for your ongoing support of Aphasia Access.

References and Resources 

• Kitti's social media handles:   S.A.Y -- Younger Aphasia Group - YouTube   https://www.instagram.com/say.younger.aphasia/ or https://www.facebook.com/groups/say.younger.aphasia

During this episode, Dr. Janet Patterson, Research Speech-Language Pathologist at the VA Northern California Healthcare System, speaks with Dr. Mary Purdy about aphasia rehabilitation, Interprofessional Practice (IPP) and Interprofessional Education (IPE). 

In today’s episode, you will:

1. Learn how IPP and IPE are related, in concept and practice.
2. Hear about the similarities and differences in IPP in inpatient settings and outpatient settings.
3. Listen to ideas on delivering client-centered treatment in an atmosphere of IPP.

Interview Transcript:

Janet Patterson: Welcome to this edition of Aphasia Access Podversations, a series of conversations about community aphasia programs that follow the LPAA model. My name is Janet Patterson, and I am a Research Speech-Language Pathologist at the VA Northern California Healthcare System in Martinez, California. Today I am delighted to be speaking with my colleague and friend, Mary Purdy, about Interprofessional Education, or IPE, and Interprofessional Practice, or IPP. Dr. Purdy is Professor and Graduate Program Coordinator in the Department of Communication Disorders at Southern Connecticut State University in New Haven, Connecticut, and a speech- language pathologist at Hartford Health Care Rehabilitation Network. Mary has been involved with educating graduate students in the principles and practices of IPE for several years and is currently Chair of Southern Connecticut State University's College of Health and Human Services IPE committee. Additionally, she actively engages in Interprofessional Practice in the outpatient setting. 

As Mary and I start this podcast, I want to give you a quick reminder that this year we are again sharing episodes that highlight at least one of the ten gap areas in aphasia care identified in the Aphasia Access White Paper authored by Dr. Nina Simmons-Mackie. For more information on this White Paper, check out Podversation Episode #62 with Dr. Liz Hoover as she describes these gap areas, or go to the Aphasia Access website. 

This episode with Dr. Purdy focuses on gap area five, attention to life participation across the continuum of care, and gap area six, training and protocols or guidelines to aid implementation of participation-oriented intervention across the continuum of care. We focus on these areas through our discussions of IPE and IPP. Two previous Aphasia Access podcasts included conversations about IPE, Episode #7 with Darla Hagge and Episode #78 with Michelle Gravier, Albert Mendoza and Jennifer Sherwood. For so many reasons, IPE and IPP are crucial in creating and sustaining high quality aphasia rehabilitation programs. I hope our conversation today adds to the growing body of knowledge in IPP and IPE. With that introduction, I would like to welcome Dr. Mary Purdy to Aphasia Access conversations. Thank you, Mary for joining me today to discuss aphasia rehabilitation, IPP and IPE. 

Mary Purdy: Well, thanks Janet. And thank you. It’s really good to be here. 

Janet: Let me just jump right in then Mary to say we've heard a lot about Interprofessional Education, or IPE, and Interprofessional Practice, or IPP. How do you define and think about these two related, but different concepts, both in general, and as they apply to aphasia rehabilitation? 

Mary: Well, in general, when we think about IPP, the whole concept of collaboration, we know, leads to improved health care outcomes, and that's what we're all after, with our people with aphasia. In terms of the education students need, to learn how to collaborate with other professionals, and this can be quite complex. First of all, they need to understand what their own roles and responsibilities are, just related to their profession. Plus, they have to learn to work as a member of a team, and not just operate on their own, solo. In order to have students become comfortable in these roles, we have to provide them with opportunities to learn, and those opportunities, I think, really need to be both didactic and interactive. 

Specifically, to aphasia rehabilitation, in addition to just general education about collaboration, students need to understand that individuals with aphasia really do have complex needs and to meet these needs, we have to focus on the patient. We hear a lot about patient-centered care, and that's really what it is that we need to be doing. So, students need to have some training in how to communicate with people with aphasia, and they need to get to the point where they can be comfortable training others to help communication. We have to help our patients identify what their goals are. 

Interprofessional collaboration and practice, and patient-centered care really is all about the patient goals. They have to be really included with the whole program. Students have to be comfortable in aiding patients in identifying their goals, and they have to understand how other professionals can help meet those goals. You know, when we work with our clients, we of course, are focused on communication, but our patients are so much more than that. We have to look at them as the entire person that they are and recognize that we as speech pathologists can't take care of all their needs by ourselves. So, we have to bring in other professionals to help the clients meet their goals. The other thing is, we know that patient's needs change, as they adjust to life with aphasia, and they move throughout the continuum of care. As those needs change, the team members may also change, so students need to recognize that collaboration and interprofessional practice is always in flux. It's an ever-changing concept, in terms of practicing interprofessional collaboration. As clinicians, we need to practice what we preach, we have to remain focused on our patient, what their needs are, what their goals are. It can be difficult at times given time constraints and other constraints within the healthcare environment, but we really do need to try to make the effort. 

Janet: Hearing you talk Mary, I'm envisioning a student, a graduate student, who is focused in trying to learn everything they can about the different aspects of communication disorders, not to mention everything about aphasia, and now we're asking them to learn more. That is, what an occupational therapist does or what a physical therapist does and how to organize that. Is that a daunting task for students? 

Mary: I think so. As I said, they're learning what they themselves have to do, you know, what do I do as a speech-language pathologist. And so, when we start throwing everything else at them, I can imagine it's very daunting for students and it's hard to try to design educational opportunities that take into consideration where the student is in their whole educational process. I think there's a timing issue of how to be introducing all of these different concepts throughout the student’s education. 

Janet: Mary, as you recall from the introduction today, the White Paper authored by Dr. Simmons-Mackie identified gap areas in aphasia rehabilitation across the continuum of care, two of which I think relate to IPE and IPP. I would like to ask you about your thoughts regarding IPE and IPP and how they intersect with the LPAA model at three times: first, during graduate education as we teach and model for students who will become clinicians; second, during aphasia treatment in inpatient medical facilities; and third in the outpatient setting, including community aphasia groups. Let's begin with the educational environment. How do you teach and model IPE for your students? Can you tell us about some examples you use and how your students respond to your IPE activities? 

Mary: First of all, in the educational environment when we're first really training the students, this is truly the IPE portion where we're preparing the students to learn the process of collaboration. Specific to aphasia, I usually start in my aphasia class. We have a couple of different case studies that we go through, that provide information to students about stroke, the professionals involved with stroke, then the person with aphasia. Through the case studies, I'm introducing them to the professions, and then to aphasia and how the professionals work with aphasia. Another thing that I do in class is, every semester students will interview a person with aphasia. They'll do a little language screen, and they'll interview a patient that comes up from our clinic. Recently with COVID, we've been doing this over Zoom, and it works fine. As part of that, they are instructed to ask the clients about their goals; what goals do they have both for clinic in terms of their communication, but also in general. Then later, we discuss what is needed to help the patient accomplish the specific goals, both within our own profession as well as outside. So, in class, there's a general introduction to IPE. 

In the clinic, we've had some fun activities, very informative from multiple perspectives. One thing that we do is we have nursing students who are enrolled in their community health class, come into the clinic to perform a health intake with our individuals with aphasia. Now prior to that, our students have given the nursing students a little bit of background on aphasia, and we have the students view a video about it. And then when the nurses come into the clinic, they work with our students there together during the interview process. The nurses go through and ask all their questions and, I shouldn't laugh, but sometimes it's amusing to see the nursing students’ reactions. They are just kind of flabbergasted in terms of, “okay, now what do I do?” For one client, the nurse was asking, the client, “Do you have a history of heart problems, cancer”, blah, blah, blah, blah, blah, and the client was responding “Yes” to everything. The nurse was saying “Oh, my gosh, you poor thing you've just been through so much”. I was in the observation room with the wife, who was saying he didn't have any of those problems. So, it was actually a very good learning experience for the nurse. Then our student jumped in and started using more pictures to try to help with understanding. We provided the supported communication prompts to help with that. 

We've had therapeutic recreation come into the clinic, and we've had a few trips into the community. We've gone bowling, and that was interesting. The students learned about devices that are available to individuals who have hemiparesis. There are these stands that the person puts the ball on and just kind of pushes the ball off this rolling stand and it goes down the alley. Our students learn a lot about accessibility and what can be done to help our patients get around in the community a bit more. That's a couple of examples of what we've done in the clinic. 

We also have worked with the Marriage and Family Therapy department to provide support to the spouses of the individuals with aphasia. I think that's another important aspect to make the students aware of, that aphasia doesn't affect just the person who has it. It affects everybody, and the spouses need support as well. Our students have sat in on and facilitated some of those sessions as well. 

Some other opportunities our students have had are again related to assessment. We had our students go to the nursing lab, where they were doing simulations of assessments, and our students played people with aphasia. That was a lot of fun, and I tell you, it told me a lot about how much our students really understood about aphasia; it gave me some very good feedback as well. We've had a variety of different kinds of activities to educate other professionals about aphasia, to educate our students about the other professionals. So, it's been a lot of fun. 

You asked about how the students responded to these activities, and an important component is the debriefing. After every activity, we always talk with the students about what they thought of the experience. They obviously they love the hands-on activities, they find those to be much more beneficial than the case studies and what have you. They've talked about how much they've learned about the patient; they're stunned often with the complexity of medical issues that the patients have, and it's sometimes led to new goals in our therapy sessions. We've had some goals where we would use aphasia friendly educational materials to inform the clients about their medications. We did roleplay scripts for community reentry, so that's been helpful for the students. It just increased their awareness overall. Their feedback was that it forces them to really look beyond just communication. And it also helped their interactions with the clients, kind of viewing them and accepting them as a real person, not just a client with a communication problem. 

Janet: It sounds like such a rich experience for your students, when they're hearing it - the case studies, it's one thing to see those words on the piece of paper that says the patient has this diagnosis or has had that treatment, and then to see this person talk about, or try to talk about, whatever their concerns are, or their issues. I imagine the students must just be on one hand overwhelmed with everything, all the information that's coming to them, but very grateful for this experience, the whole interprofessional education experience, 

Mary: They sometimes are overwhelmed, but I think the benefit outweighs the degree to which they're overwhelmed. 

Janet: I'm sure that you can share stories of your own, thinking back to assure them that other people experience this, and you'll get better with time, and it will feel better and more natural in these kinds of conversations the longer you go in the career in the field of speech language pathology.

Mary: I always tie in my personal experiences when I'm trying to explain one of these concepts. It does make it a bit more real to the students. 

Janet: Well, that actually leads into my next question, Mary. You are, in addition to being the university faculty member, you are also a practicing clinician, and you use IPE and IPP in your work. How do you incorporate the ideas and the principles of IPP into your clinical activities, when you're in the inpatient medical settings, we'll talk about that setting for just a few minutes, the inpatient medical setting? 

Mary: That's actually where I started my clinical career, in inpatient rehab, and it's always remained kind of dear to my heart, although it was very different back then, where patients would stay inpatient for three months. Two weeks they get now if they're lucky. In the inpatient situation it's a little bit easier to do collaboration because there usually are established team meetings. There are some requirements for accreditation related to collaboration. Though I have to say, that just having a group of individuals come together for a meeting doesn't necessarily include collaboration. I think it has to be approached very thoughtfully, in terms of what are we going to do to differentiate true interprofessional collaboration from just a multidisciplinary team? I think one of the main differences is truly staying focused on the patient and having more of a problem-based approach. We look at what are the issues with the patient and who needs to come together to address those issues. So, the collaboration is kind of built in through these regular team meetings. 

In addition to that, though, I think the inpatient setting provides some unique opportunities. I've done a lot of co-treatment with PT and with OT. Just last week I was down in our makeshift apartment, it's actually a model of an apartment that has a bedroom, kitchen, everything, and I was working with OT. The OT was trying to help the individual manage with their one hand and also be conscious of the safety issues. The inpatient setting provides the opportunity for us to do some co-treatment as well. I've worked with PTs and OTs, trying to help the patient ambulate. We work on carryover of each other's techniques, and we educate each other about our own professions. Even at that level we have new OTS coming on the scene who had never worked with a person with aphasia. So, the co-treatments allow us to provide some of that education in a very naturalistic environment, which obviously is helpful to the patient. We also work together to figure out which discipline needs to address, what aspects of a problem. If a patient is having issues with problem solving, or flexibility, speech can address that, or OT can address that. So, we kind of work out who's going to do what, in a very non territorial way, which is fun. 

One of my favorite projects that I did was a self-medication program. I work very closely with nursing to help educate the patient about their medications, what they're for, what the side effects are, what to do if there's a problem, and how to fill their med boxes. I took a lot of the information that the nurse was providing the client and incorporated that into my own therapy sessions in a much more aphasia friendly manner. It really is helpful in helping the individuals become a bit more independent. Anything that we can do to help increase their independence is so good for their psyche, for their motivation, and for their own self-worth. Not having to depend on a spouse to give them their meds is a big accomplishment. We also follow through on using techniques recommended by one profession in the other settings. So, I will make sure that I have patients positioned properly, when I'm working with them; I make sure that client has their communication book with them, or the OT would make sure the patient has the communication book when they're in the OT session. There's a lot of ongoing discussion about what we each need to be doing to help one another and help the patient. 

Janet: That actually, it's both education and its practice, isn't it, because whatever you're learning and teaching new about aphasia in your classroom is also being shared, if you will, with your colleagues at the hospital, and they're teaching you, and you're doing it within the confines of the needs of a particular patient. So, I imagine that the interprofessional practice part, the education part of that, is just always there, is ongoing, and you don't make assumptions that the OT or PT automatically understand your goals in speech, nor do you automatically understand theirs for occupational or physical therapy.

Mary: The education component really is carried on throughout, not with students, but as you said, with the other professionals. We're all always learning. I've been in this practice for more years than I care to count and I'm still learning things. That makes things fun and exciting and never boring. 

Janet: When I think back, about the importance of LPAA and the importance of patient- centered care, when I think back on some of my practice 100 years ago, I wish I would have done things differently for patients. I could have been a much more effective clinician, but I wasn't thinking in that direction at that point in time. But I am now and I'm hoping that our listeners will also realize there's a lot out there that we can learn from, and we can impart to other professions as we all work to help patients.

Mary: I cringe at some of the things that I did 30 years ago, but you live and learn. The end goal is always the same - we want to do what we can to help our patients. We want our patients to be able to lead fulfilling lives, how we get them there has changed, a little bit. 

Janet: You've talked to us now about some of the activities you use when you educate students in IPE, and then you've talked about some of the things you do in Interprofessional Practice when you're in the inpatient setting. The third setting I would like to talk to you about is community aphasia groups and the outpatient setting. You may be the only speech-language pathologist on the staff, or you may not have access to other rehabilitation professionals in the outpatient setting like you do in the inpatient setting. How do you see IPE and IPP intersecting with the LPAA model in these clinical settings, either outpatient settings or community aphasia groups? 

Mary: Personally, I don't work with community groups outside of the university and I think groups within a university are very different than groups in the community, you know, separate from an educational environment. I continue to work providing
outpatient services to single individuals with aphasia, and without a doubt, thinking about collaboration requires more effort. Most of the time, the patients have already finished their OT and PT by the time they get to the Outpatient Center, at least where I am. I don't have those professionals nearby so collaborating would be difficult. But the thing is, even though they may have been dismissed from those other therapies, that doesn't mean that the patients don't still have needs, and their needs now might be very different than when they were discharged from the therapy, three months, or six months prior. I think we need to remain patient centered and always be thinking about, “What is this person doing? How fulfilled is this person? What are their goals?” The patient has been living with aphasia for a while now and so their needs have changed. They are, in my experience, branching out a whole lot more or wanting to branch out more so we have to know what their goals are for life participation, what is it they want to accomplish? Those goals may be completely unrelated to what I, as a speech-language pathologist, will be doing. 

For example, one of my patients had always done knitting, she just loved to knit. She was lamenting that she wasn't able to knit for her new grandchild. I was asking her what was the main problem with it? Of course, she indicated her hand, she couldn't hold the knitting needles. I briefly talked with our OT in our clinic, and asked, “Would this be something that you think we should get another referral for? Is it something that you could really assist her with?” And the OT said, “Well, yeah, sure.” So, we did get a referral for her to get an OT eval, and the OT gave her a built-up knitting needle. I was familiar with them for pens, but I had never even thought of one on a needle. That enabled the patient to continue with her knitting. Granted, she was slower, and she might have missed a stitch or two, but she was so much happier that she was able to do that. And so, OT accomplished the goal of getting this patient back involved. I guess the moral of the story is, even if we're not directly working with the other professionals, they may be accessible, or we can get them re-involved, and so we need to keep an open mind about that, and not just think that, okay, they're done with PT, they're done with OT, because there definitely are things that can be done outside the realm of communication. 

Having a good understanding of what our patients’ skills are and what their challenges are, can also help us set realistic goals, help our patients set realistic goals. I remember working with a client a while ago who was living at home but needed assistance to get out of the house, to transfer into a car, and so on and so forth. I wasn't really even thinking about that, you know, the patient made it to my office, so I just kind of assumed that they could do whatever. The patient wanted to go back to going out to eat so we were working on scripts. I talked about this with the physical therapist as the patient was still receiving physical therapy. The physical therapist said to me that it's okay if she wants to work on that, but she's not going to be able to get into that restaurant, it's not accessible, physically accessible, and the patient has so much trouble getting out of her home into a car. The whole thing is very laborious and so the family doesn't really want to undertake that challenge at this point. They are willing to do it to get her to therapy, but the family isn't really ready to get her into the community yet. That just made me take a step back and think, “Well, duh! Yeah, of course!” I didn't have my goals aligned with what other professionals had for goals and what the patient had. Understanding more about our patients really can help us all, patient and professionals, align our goals, so that we can accomplish them in a more efficient manner. If a patient needs some therapy and isn't receiving it, we can always ask for referrals; they might be denied, but it doesn't mean we can't ask for them. 

Janet: What you said made me think of a couple things. Something you said earlier that aphasia doesn't just affect the person with aphasia, it affects the family. So, when you're talking about setting goals, like your restaurant example, thinking about the PT goals, the OT goals, the family goals, the patient goals - maybe the patient's goal of wanting to be able to order in a restaurant could have been redirected to learn a script in preparation, maybe, for finding a restaurant script later on, but now, at this moment in time that isn't the best direction, as you said. So, it just makes me think really that aphasia is about the family, it is about more than just the person with aphasia. 

Mary: Oh, absolutely. Patient-centered goals definitely are centered on what the patient wants, but I think have to be considered, along with what the family wants, and what's realistic. They're the ones that are existing together. They are the ones that are ultimately responsible for carrying out, or not carrying out, these different things. I think everybody needs to be on the same page.

Janet: Something else you said also made me think - the knitting needle example. In addition to achieving a goal, or to listening to the patient, you're also modeling for the patient how to ask for something, or how to think about another referral, because a new set of skills has developed, or a new set of problems has developed, now that you're further along in the aphasia journey. 

Mary: I think it's a part of our phase of therapy in general, I think increasing self- advocacy is a critical component, making them aware of what their rights are, and what they can be asking for and demanding. Then giving them the tools to do that is a major component of our therapy, 

Janet: That is exactly what LPAA is, asking what it is the patient wants to do, looking around the environment, and asking how we can help the individual achieve those goals, and the family achieve the goals as well. So, your comments and ideas about IPE and IPP, I think are pretty exciting, Mary, I hear the excitement in your voice as you're talking. But I also think they're crucial to the way that we should be thinking about how to deliver rehabilitation services in the coming years and months ahead of us. 

As we draw this Podversation to a close, what are the pearls of wisdom or lessons learned, that you would like to share with our listeners? And in particular, what practice suggestions might you offer to clinicians, as they try to incorporate principles of IPE and IPP into their own practices? 

Mary: Well, I've certainly learned a lot. I've learned my lessons as I've moved through this journey. I do have fun with it, so it's always worth it. In terms of education, for educators and IPE, I think I would recommend starting small. Sometimes my excitement about IPE has led me to be a bit over ambitious, and that can get frustrating for me, it can get frustrating for my colleagues, and for my students. So, starting small I think, is a good place to start. We might set expectations that are not necessarily realistic for our particular environment or for a particular academic department. I think it's important to know that we can be effective with small changes, small changes in our curriculum, like incorporating the activities into the aphasia class. Another thing that has been helpful is finding a group of like-minded colleagues, because a lot of times many of these projects are carried out on our own time in the educational environment, so you have to be with others who are as excited about the project as you are to really make it work. I'd suggest getting involved with schoolwide Interprofessional Education efforts if they exist. If they don't exist, jump in and try to create them so that they can exist. 

For clinicians, I think we have to practice what we preach - more follow through on the different principles that we're instilling in our students. I think as clinicians we have to stay patient-centered and think beyond just communication. Similar to what I mentioned for educators, start small. A meaningful change in the life of a person with aphasia doesn't necessarily require great amounts of time and effort. If we just think small, think of individual goals, little changes can have a big impact. Then finally, I would say, get to know your patient and be their advocate. 

Janet: Those are good lessons for all of us and not always easy to do, but certainly worth the doing, I think. 

This is Janet Patterson, and I'm speaking from the VA in Northern California, and along with Aphasia Access, I would like to thank my guest, Mary Purdy, for sharing her knowledge and experiences with us, as she continues her exciting and important work in IPE and IPP. 

You can find references and links in the Show Notes from today's podcast interview with Mary Purdy at Aphasia Access under the resource tab on the homepage. On behalf of Aphasia Access, we thank you for listening to this episode of The Aphasia Access Conversations Podcast. For more information on Aphasia Access, and to access our growing library of materials, please go to www.aphasiaaccess.org. If you have an idea for a future podcast topic, please email us at info@aphasiaaccess.org. Thank you again for your ongoing support of Aphasia Access. 

References 

purdym1@southernct.edu 

Purdy, M. H., Hindenlang, J.& Warner, H. L. (2017). "Interprofessional Education: Take the leap." Presentation to the AMERICAN speech-Language-Hearing Association, November 2017. 

Gurevich, N., Osmelak, D.R. & Farris, C. (2020). Interprofessional education between speech pathology and nursing programs: A collaborative e-platform curriculum approach. Journal of Interprofessional Care, 34(4), 572-575. https://doi.org/10.1080/13561820.2019.1657815 

During this episode, Jerry Hoepner, a faculty member in the Department of Communication Sciences and Disorders at the University of Wisconsin – Eau Claire, speaks with Dr. Audrey Holland about receiving the 2022 Robin Tavistock Award. 

In today’s episode, you will:

1. Learn about Audrey’s recognition as the Robin Tavistock Scholar for her lifetime of achievements. 
2. Learn about Audrey’s humble beginnings and how she moved out of the Skinner box and into functional communication. 
3. Learn about Audrey’s philosophy on mentorship and being a mentor to the masses. 
4. Audrey shares advice to the next generation of LPAA practitioners. 
5. Find out if Audrey is truly “as common as dirt.” 

Interview Transcript: 

Jerry Hoepner: Welcome to the Aphasia Access Conversations Podcast I’m Jerry Hoepner, a faculty member in the department of communication sciences and disorders at the University of Wisconsin - Eau Claire. Today I’m joined by Dr. Audrey Holland, the 2022 recipient of the Robin Tavistock Award. Although I feel as though no introduction is necessary, nor would that completely reflect the lifetime of work by Audrey, it is my distinguished privilege to introduce today's podcast guest. For over 60 years and she started when she was roughly 5, Audrey has been a leader in moving aphasia care towards holistic participation-based interventions that ultimately improve the quality of life for people with aphasia and their families. From her work on functional communication to aphasia bank to co-founding Aphasia Access, she has made remarkable impacts on so many of us. Her work on coaching and counseling has influenced the speaker. Her work on coaching and counseling has influenced the field of speech language pathology even more broadly without further ado, it is my distinct privilege to introduce Dr. Audrey Holland. 

Jerry Hoepner:  Well, again so good to see you today Audrey. It's always nice to connect with you and have a conversation.

Audrey Holland: Yeah, I just wish there were more opportunities, and I think this has been a very sparsely here for the kind of things that really make a difference for a lot of us, which is that last meeting seems so long ago and the last one for me was the one I had in Baltimore and whoa.

Jerry Hoepner: Yeah it seems like-

Audrey Holland: Centuries.

Jerry Hoepner: Yeah it seems like a long time since we've all gotten to be face to face, since all of this pandemic stuff has gone around yeah that's for sure. Really looking forward to getting back to seeing people, and you know, giving hugs and all of those things again yeah for sure yeah definitely.

Audrey Holland: I mean that's as much the meeting as the meeting.

Jerry Hoepner: Yeah absolutely. I agree, there's, you know, there's good things about connecting virtually but it doesn't quite feel the same as when you're in this. Yeah for sure. So hopefully by the time the next of Aphasia Access Summit comes around we'll be able to meet in person and I know we have a lot of new friends and old friends that we’ll be able to reconnect with at that time, too, oh.

Audrey Holland: Yeah that's going to be pretty fast. I think that's going to be faster than right now. I can visualize.

Jerry Hoepner: I hope so yeah, I hope that's the case that we can, yeah like you said, get back into rubbing shoulders with each other again. Yeah it was like we're getting can see the end of the tunnel. I hope- I should knock on wood when I say that. But it seems like getting there. Yeah well Audrey it's my pleasure to have a conversation with you today about your recent award the Robin Tavistock Award. Would you be willing to talk a little bit about what that means to you?

Audrey Holland: Oh yes, I’m very, very, very, very honored by that. I believe I’m not sure of them, I meant to open up this morning and I didn't. I believe it's been in existence for more than 15 years, but this is only the second time that it's gone to an American. I think those things are correct.

Jerry Hoepner: I believe you're right, I think in 2018, Simmons Mackey was the first American and then we've had another North American in 2020 and it was Aura Kagan. And, of course, a really long list of respected names in the in the field of aphasiology. Linda Worrall, Chris Cote, and Marion Brady and so many more that that come to mind that have just been such a great influence on the field in.

Audrey Holland: Are there Australians?

Jerry Hoepner: I believe, Linda Worrall. I’m not sure if there were besides Linda.

Audrey Holland: I think. But even so that's really wonderful that its international.

Jerry Hoepner: Agreed.

Audrey Holland: Don't mind that it's English speaking I think that's kind of appropriate but that.

Jerry Hoepner: Yeah, it's a pretty remarkable group of people that have been awarded this so we're really happy to see that honor being bestowed on you and certainly more than well-deserved given your work. With that in mind, maybe we can take just a little bit of a conversational journey through your kind of list of achievements, or some of your most kind of enjoyed achievements from the past and maybe talk just a little bit about some of the work that you've done in the past and how you see that as contributing to the to the field of aphasiology today.

Audrey Holland: Well order, the thing that I sort of I’m not embarrassed about this in the slides, but it really does work kind of funny looking back on it and that's the fact that so much of my early work was so rigid and so in the box and I didn't realize it really except as I stopped doing so much of it and started doing work that was much more satisfying to me and creative to me, and hopefully other people as well. But it's been kind of checkered career, when I look back on because you know I started out in child language.

Jerry Hoepner: I didn't know that.

Audrey Holland: Oh yes, oh yes. Not only that I started out in behavioral sciences really the rigorous behavioral sciences. I was married to a man who co-authored the analysis and behavior with B.F. Skinner and so that influence on my life was big and I remember distinctly waking up one morning and Jim and I were living in Boston you know and we were living in Boston and he was working and it was sort of like, “Okay, I have to- I got to tell her who he really married here. Jim there is something I have to tell you.” “Okay.” I said, “I got a behaviorist.” And he said, “yeah.” And I thought I my marriage was saved.

Jerry Hoepner: He already knew.

Audrey Holland: He just went back to sleep.

Jerry Hoepner: So, what moved you from, as you said, being kind of in that box, the more rigid behavioral approach to something that was more functional?

Audrey Holland: I can't resist the Skinner box thing like.

Jerry Hoepner: Exactly- the Skinner box.

Audrey Holland: I was raised in the Skinner box. Not all the time, but. What moved me from that? I didn't see people being satisfied by reaching- I can’t think of how the design definitely that would help people realize how their life can be better.

Jerry Hoepner: Right.

Audrey Holland: That just drove me insane and I thought you know there's two things you can do: You can either stop doing what you're doing then say, “I’m through, I quit, I’ll do something else, I’ll sell hot dogs on the corner,” whatever but what made sort of more sense to me was how can I move from what I am doing into the kinds of things that I think are worthwhile doing and that's actually when I started writing grants that had to do with getting along in life which quickly took limelight off behavioral analysis. All the things that didn't help people talk any better we're- not in talking in better just in general but getting along anywhere that's it speaking world, speaking linguistic world but just speaking.

Jerry Hoepner: So that really launched you it sounds like into the work that you did in the late 70s and 80s on functional communication and yeah I would say that work has been so influential on many of us, and really started to move the field in a direction away from the traditional drill and practice and to something more meaningful for supporting individuals with aphasia so fascinating to think about how that transition began. How did that relate to your working with individuals with aphasia and the way that they responded to this new way of doing things?

Audrey Holland: Well my sense was I wasn't doing anybody very much good. I mean you didn't do a whole lot of practice sentence structure really didn't seem to go anywhere and people always seem to be thrilled when I got through with that part of my therapy and started talking. Finally, got through to me that I felt better and that really, really made the difference and that was still in Boston, a very long time ago.

Jerry Hoepner: I know we've talked about this before a little bit, and I know, there was a whole room full of people that initially had conversations about the start of Aphasia Access or what would become Aphasia access but would you be willing to kind of give us a peek into that in those initial conversations and how that all got started and became what it is today?

Audrey Holland: Well, and I think that was the Boston meeting essentially that really got kicked off at the Boston meeting where everybody there, if not totally, at least partially had a mindset that fit with, “Okay, let's move this cart a little forward,” and it sort of shows, actually you were there, weren’t you?

Jerry Hoepner: Yeah.

Audrey Holland: Yeah it did it didn't start at the beginning, but it sort of was a ground swell. So that by the last date is like kumbaya we're all sort of thinking, “Oh wow look at all this room full of people feel as I do.” 

Jerry Hoepner: Was really remarkable to have all of those people together to with the same mindset and with a lot of shared values, to have those conversations and just to continue the work that was really burgeoning at that point in our field on life participation and.

Audrey Holland: It was it was like so kumbaya meeting is just such a warm, warm thing that nobody was like, “Well, I better get out of here. This is not my cup of tea,” you know nobody's robbing people thought that.

Jerry Hoepner: I don't know, I think it was a pretty close-knit group of people so.

Audrey Holland: But how did that happen?

Jerry Hoepner: That’s a good question. I think some good people brought the right minds together in the right place at the right time.

Audrey Holland: I knew who to see just to come.

Jerry Hoepner: Pretty remarkable what it's grown into since that time and the connections around the world and yeah absolutely. Well I’m going to shift gears a little bit, because I know, one of the things that people value so much about you and you hear this at ASHA and you hear it at Aphasia Access conferences and other conferences as well I’m sure, but that you've been a mentor either formally or informally to so many and people really value the advice you give and the human connection that you make with everyone. So maybe you can give us a little bit of insights into your you know your thoughts on mentoring and your thoughts on kind of helping to move the next generation forward.

Audrey Holland: Well, the first words that come into my mind with that question are hey we're all in this together, and I sort of see the group as people who share this sort of like, “Oh my gosh, I’m home. I found a comfortable place to be,” and I think people come by that, some earlier, some later. Some of my best friends never have gotten to that point. And they at least have the kindness to me not to tell me I’m wrong, and I don't tell them they're wrong. But it's pretty clear that more people are into this headset then I think we have any idea. I don’t know if that’s a decent answer. I’m not I’m no longer uncomfortable, so I really believe in helping each other is more important than if they say correctly right.

Jerry Hoepner: And it's remarkable that you're you know you're so approachable and so willing to approach anyone and get on their level. Your statement, you know “We're all in this together” is a really good reflection of that that you're willing to have a conversation with anyone and I feel like, as you said, it's that way at Aphasia Access meetings in general, no one is you know kind of out of reach, so to speak for a conversation.

Audrey Holland: I’m going to share one of my favorite stories with you Jerry. At Arizona, and I basically ran the spouse groups so that I add some and we were walking out of the spouse group one day, and there was a woman walking behind in front of me, actually, and she had with her someone that she brought to the group, and this is a spouse, and she said to the spouse she said, “What did you think?” And the woman said. She was really interesting. She was just like the rest of us.” And the other woman who I didn’t said, “I told you she was as common as dirt.” I was right, I was walking right behind him I cracked up, I mean I just loved it. That's probably my favorite color compliment I’ve ever gotten. Audrey Holland: Common as dirt.

Jerry Hoepner: Common as dirt. That's high praise when it comes, you know, meaning that you're able to connect in and didn’t seem standoffish or out of reach. That's fantastic, totally fits your ability to connect with a whole range of people so that's a fantastic story I love it.

Audrey Holland: It was, “Yes!” for me but I couldn't exactly you know do that in public. But it was I really felt it that's why I don't mind telling story.

Jerry Hoepner: Common as dirt, or you know that could be a title for the podcast we'll see. No that's fantastic, I wonder, so you mentioned that you are doing the spouse groups and it brings me to another question that I was thinking about because, along with all of your brilliant work in the realm of aphasia, you've done some amazing work in the realm of coaching and counseling that has impacted even a broader audience in our discipline. How did you make that leap towards coaching and counseling?

Audrey Holland: Remember, I went to a school that specialized in counseling and the whole picture, etc, etc, etc. So that that actually came with my master's degree, I think that was it stuttering. But the orientation to working with whole people not just their language has always been part of my- has always part of my graduate training from my master's straight on so I don’t know if that answers the question but.

Jerry Hoepner: Yeah absolutely definitely does so. I have one more big question and then maybe we can just wrap up our conversation, but I know that I have to ask this for all of my colleagues and future colleagues and students as well, so if you have any advice for future generations of speech language pathologists and life participation approach practitioners, what would that advice be to someone who is just moving forward or will be in the future years?

Audrey Holland: Whoo. I think part of the answer to that is be gutsy.

Jerry Hoepner: I like it.

Audrey Holland: People are not going to accept all this, but you know if you're gutsy enough you're going to be different enough and you're gonna be viewed as somebody that might have something to say and I don't think it's a bad thing to be who you are clinically I think you have to be who you are clinically and who you are as a teacher, not just you are as a body, you know so.

Jerry Hoepner: So, be gutsy, be assertive, be creative, take chances, is that what I’m hearing?

Audrey Holland: Uh huh. And take your lumps.

Jerry Hoepner: Lumps yeah that's a good point because not every- if you're always trying new things and pushing the boundaries I’m sure you'll find some times when things don't go exactly like you hoped, they would.

Audrey Holland: No that's never happened to me.

Jerry Hoepner: No, me neither you know for sure.

Audrey Holland: We're just perfect.

Jerry Hoepner: Yeah exactly. It’s nice to be that way.

Audrey Holland: When you come at somebody with a different opinion and you say, “No, the moon is not made a green cheese”, you're going to take some lumps and I think one thing good to be able to do is to shut your ears shut your ears, get away from it and continue to be yourself.

Jerry Hoepner: That's terrific advice. Yeah, I appreciate that idea of trying new things pushing the boundaries. That's how we move forward, rather than trying to stay in our comfort zone and do the same things you've been doing.

Audrey Holland: You're not gonna die. We aren't. You might take a few lumps, but so.

Jerry Hoepner: I feel like that sort of brings us full circle, when you talked about being in the box and not feeling very comfortable in the box and then kind of rounding things out with you know stepping out of that box, you know being gutsy, having the courage to do that and to move things forward so.

Audrey Holland: It isn't that you're feeling that I am much happier when I am who I am rather than when I say, “That was a dumb thing, that isn't me, I didn't mean to do that.” Yeah.

Jerry Hoepner: Yeah, I think that's great advice and I can see why that would carry over to you know the individuals with aphasia and their and their family members that you work with too. It's hard for them you know to be themselves and to push the boundaries if we're not being ourselves and we're staying in the box so fantastic.

Audrey Holland: It's like I just realized this morning that I have a couple of friends who are, well more than a couple of friends who have spouses and people who are aphasic, and so I talked to two or three of them this morning, just like, “Hi, how you doing, what's going on?” Just not anybody but Audrey.

Jerry Hoepner: On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.

During this episode, Janet Patterson, Research Speech-Language Pathologist at the VA Northern California Healthcare System, speaks with Dr. Linda Worrall. Linda is Emeritus Professor at the University of Queensland, a fellow of Speech Pathology Australia, and founder of the Australian Aphasia Association. They will be discussing IARC; a bit of history, the influence it has had on aphasia research and practice, and what to look forward to in 2022.

In today’s episode you will:

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 info@aphasiaaccess.org, and thank you again for your ongoing support of Aphasia Access.

During this episode, Jerry Hoepner, a faculty member in the Department of Communication Sciences and Disorders at the University of Wisconsin – Eau Claire, speaks with Dr. Tyson Harmon, 2021 recipient of the Tavistock Trust for Aphasia Distinguished Scholar award, about his work that addresses factors outside of language that influence communication success.

In today’s episode you will:

• Learn about the importance of contextual factors and how the environment can place cognitive demands on people with aphasia. 
• Learn about some potential cognitive factors that can prevent people with aphasia from participating fully in everyday communication. 
• Learn about how communication partner responsiveness and emotional arousal can affect everyday communication participation. 
• Learn specific strategies to help people with aphasia cope with these environmental, task, partner, and emotional demands. 
• Learn about strategies for helping people with aphasia to change their mindsets in a way that helps them deal with these everyday challenges. 

Interview Transcript: 

Jerry Hoepner: Welcome to the Aphasia Access Conversations Podcast I’m Jerry Hoepner, a faculty member in the department of communication sciences and disorders at the University of Wisconsin - Eau Claire. Today I’m joined by Dr. Tyson Harmon 2021 recipient of the Tavistock Trust for Aphasia Distinguished Scholar award. Tyson Harmon is an assistant professor in the department of communication disorders at Brigham Young University and is interested in the assessment treatment and psychosocial aspects related to aphasia and acquired apraxia of speech. His current research is focused on understanding how attention emotion and language interact to affect functioning and recovery and aphasia. I’m privileged today to discuss Tyson's work with him. Broadly, his work addresses factors outside of language that influence communication success contextual factors such as cognition emotion, environment, and social or partner factors. Those topics obviously fit within the model of LPAA, so I’m really excited to have this conversation with you today. Tyson I’m a big fan of your work and its relevance to what we do every single day so.

Tyson Harmon: Thanks so much for having me, Jerry. I really appreciate it, and just thrilled to be able to speak with you. You've always been just a great support to me and my work and I just have really appreciated your mentorship so thank you.

Jerry Hoepner: Thank you, and I can remember the first time we met, I think, maybe the first or second Aphasia Access Leadership Summit.

Tyson Harmon: That's right, it's been a few years.

Jerry Hoepner: Yeah, we were both 10 years old, at that time.

Tyson Harmon: Yeah, it's gone by fast.

Jerry Hoepner: It sure does it's amazing how quickly that goes by. Yeah well, maybe I’ll start out with kind of a big question and ask you a little bit about your experience and your mentors in the LPAA model I know you've had some really good ones, but not all of our listeners are aware of who they are.

Tyson Harmon: Sure, yeah, I would be so happy to talk about that. So yeah, I mean I have been blessed to have many mentors and a lot of people who just take an interest in me and my work from early on, and I mean, as I mentioned Jerry, you've been one of those people. But I want to mention a few people specifically and I first need to mention my doctoral advisors Katarina Haley and Adam Jacks, I mean they have just had such a profound influence on who I am as a researcher. The topics that I’m interested in, the way I go about what I do in research, and for those of you who know Katarina and Adam you understand that they're kind of a package deal, they collaborate a lot and I was it was very blessed to be co-advised by them during my doctoral training. One thing about Katarina that I think is important to mention is, as we'll talk about today, I do both qualitative and quantitative work and Katarina was very influential in kind of mentoring me towards learning qualitative methodologies that really allowed me to pursue some of the psychosocial interests that I have and we'll talk a little bit more about so that has just been really, really important. I think, at that time, when I was an early PhD student at trying to figure out what my interests were and what methods I needed to get a handle on, I didn't really have the foresight myself to understand how important qualitative methods might be but Katarina did. And she really guided me in that direction which I’m really grateful for. And you know I guess just the other thing I’ll say about Katarina and Adam is they just always were such excellent models for me of trying to really keep the people that we're trying to serve through our research in mind and to recognize them as people not subjects or participants and to try to you know just do things that will really help them and I have just been really grateful for that and remember that as I’ve tried to kind of start my own independent research trajectory so really, really grateful for them, and their mentorship and guidance. The other person I need to mention is Nina Simmons-Mackie. So I had been a fan of Nina Simmons-Mackie’s work from early on, when I was a young master's student. And I was blessed, I think it was in 2014, to be able to have her as my ANCDS fellows mentor and so that was kind of the first time I was really able to interact with her one-on-one. And that was really, really meaningful to me. I even remember specifically some of the conversations we had, but the thing that has been most impactful is that you know, having just really admired her work for such a long time and then meeting her in person ever since that that time in 2014 every time I see her, she just takes such an incredible interest in me and in what I’m doing and I mean she'll read papers, when I send them her way she just gone above and beyond, to really mentor me and help me and, to be honest, I probably wouldn't have even been in the running’s for this this award that you mentioned Jerry, if it weren't for her because she reached out to me and said, “Hey Tyson, I think you might be a good candidate for this, you should think about it,” and I, personally, I mean I sometimes, you know, feel a little bit inadequate, I guess, I struggle with feelings of inadequacy sometimes I might be the only one, but you know to me, I was like, ‘no I really like I am a good candidate for this?, this seems like a pretty big deal.’ But with her encouragement, you know I put my name in the hat, I guess, I so I’m grateful for her just believing in me too. So yeah, I mean there's so many people I could talk about. I think I do need to mention one more person and that's Jacqueline Laures-Gore. So, you know her work and stress on aphasia has really impacted me and I was able to connect with her right as I was finishing my doctoral studies and she was able to kind of serve as a mentor for me, as I was thinking about where to take some next steps, and you know similar to other people I’ve mentioned she's just really taken an interest in me and my work and just been so generous about reaching out, so I think you know all of these people, obviously impacted me as because of the research interests their focus on the life participation approach to aphasia which is also kind of who they are, and they’re great compassion, they have not only for people with aphasia but for me and so I’ve really just been grateful for that there's more people I could talk about, but I think those are hits on some of the big ones.

Jerry Hoepner: Yeah, that's a pretty good list, and I, I just want to highlight a couple of things that you said, because I think they're so important, when you discuss this idea of Katarina encouraging you to learn those qualitative methods. I think it speaks, and you talked about this a little bit, it speaks to the idea that you have the right kind of methods to answer the kinds of questions that you want to ask and that's really the way that you've approached it, in the way that we should all approach it, so I think that's just something to really highlight because it's you know not easy or effective to answer every question with the same methodology so.

Tyson Harmon: Yeah absolutely, so important.

Jerry Hoepner: And I really appreciate, and I’m not surprised, but the focus on seeing our research participants, and I even hesitate to say that word as it comes out of my mouth as people and, as someone who needs to benefit from the work that we're doing not just be observed and tested and all of those things, but there should be some tangible benefit or impact on them down the road at least because of our work with them, so I think that's just so, so important to highlight and I hope that others will recognize that importance as well. I know we as a company and in Aphasia Access surrounded by people who value that but I don't know that not everyone does, obviously so yeah.

Tyson Harmon: I mean, and just one other, maybe real brief anecdote I’m in thinking about that aspect, and particularly Katarina has influence on me in that regard, and one of the early qualitative pieces that I published was with Katarina and it was really an effort to try to understand whether treatment approach for apraxia of speech that she was kind of thinking about and developing was acceptable to the people that we were going to be using the treatment on, and so we did a qualitative study that all about kind of social validity to you know get that input from the beginning, as we were planning and designing that that intervention, rather than waiting until it has already been developed to get that feedback and so again just you know it's an example of I guess stakeholder engagement, which I’ve continued to be very interested in and grateful for the efforts that are going on in the field to get stakeholders more involved, from the beginning, from the onset of research. I think that's really important but, again, that was just modeled for me early on, through those mentors.

Jerry Hoepner: Yeah, and that's it! Stakeholder engaged research is just such an important element of that participant as a human being, who has you know, a stake in in the research that we're doing, and it has been should have some things to say about it so absolutely and what a just a great model and a great way to start out. In terms of your work as an academic, so to speak, or on that path and the other thing that I wanted to mention what goes back to your comments about Nina Simmons-Mackie and how generous and open she was an encouraging she was, and I know that definitely applies tonight because I think we've all seen that at you know Aphasia Access conferences and at ASHA and that any other place you might run into her, but I think that's true of so many individuals that are involved in Aphasia Access. I know that when I did the podcast with students that's something that was really almost shocking to them how easy it was to have a conversation with people that they've only seen their names in print before and feel like it's just you know, like you're talking to a friend or another just another regular human being, and I think it's really important for us to keep that.

Tyson Harmon: Yeah, for sure I tell my students often after I get back from conferences like you guys are in a great field, because the people in this field, or just nice, you know, like they're just so many nice people they're just genuinely you know, nice and easy to talk to and caring. So yeah, it's definitely something that I’ve noticed in my students have noticed that too.

Jerry Hoepner: Yeah, that emphasis on relationships that we bring to our work and our research our clinical work and our research definitely carries over, you know. We walk the walk, I’m hoping, in terms of this profession, so carries over to those relationships with other professionals as well, which is fantastic.

Tyson Harmon: And I think so.

Jerry Hoepner: Well, since I did bring up the Tavistock Trust for Aphasia Distinguished Scholar award, would you talk a little bit about what it means to you to be awarded this and potentially what its impact will be and has been on your research?

Tyson Harmon: Yeah absolutely I mean, first of all I just want to say how honored I was to receive this word award and frankly a bit shocked as well, I didn't really see it coming or expect it and you know it's meant a lot to me, and I think you know the one of the things that early on just hit me about this award that was the in not just the award but the Tavistock Trust for Aphasia in general is that you know this was founded by a person with aphasia and their family and to me, you know thinking about Robin to have a stock in relationship to this word is really, really meaningful because, again I kind of go back to what I said previously, but this is about people, and it really caused me to reflect like am I honoring the people with aphasia in what I do professionally and in college, as I mentioned cause me quite a bit of reflection, I think it was a confidence booster as well in that you know I it's nice to kind of have your work recognized and think, “Okay, maybe something I’m doing is making a difference” and, to be honest, this kind of came at a time in my kind of academic career I’d hit three years exactly in my professorial position and I was at this kind of point where I was like man is anything that I’m doing making a difference and, and so it was it was just kind of a nice affirmation of like okay like you know this, this does matter, the work that I’m putting in is not only noticed, but it can make a difference for people with aphasia, which is what I really hope and so yeah, I think that confidence and just a greater commitment, as I mentioned on people with aphasia and their families in terms of how it has impacted and will impact my research. I’ve been really grateful for the opportunity. That I’ve had with the encouragement of the Tavistock Trust for Aphasia Board to get involved in the collaboration for aphasia try and to make some connections with a physiologists who are working internationally. So, you know I think there's a lot of potential there and I really believe that. You know, to really make a difference we're going to need to do more and more collaborative work both within this country and internationally, so it has just been awesome just so honored to have received the award and really hope to honor the Tavistock trust and you know the Tavistock family in how I continue my research trajectory.

Jerry Hoepner: That's fantastic, and I just want to emphasize how important that is you mentioned CATS (collaboration of aphasia trialists), for us to kind of band together and address topics internationally that I mean, I think, maybe just even a few years back, it would have been a much bigger obstacle to be able to have those collaborations but now it's just kind of a part of what we expect and to be able to you know when you're looking at kind of niches in the field right some carved out little area of aphasia interventions and so forth. It's good to connect with other people that are in a similar or the same niche and can collaboratively accomplish a lot more in terms of that work together so I just think that's a really important outcome for sure.

Tyson Harmon: Yeah, well and I guess just the other comment I’ll make about that is I’m always surprised at how like gracious people are when I reached out to them, they know like we're all so busy, and have so much going on but you know I’ve been able to have a few great conversations with international colleagues and people have just been so gracious and kind of responding and taking time and talking about overlapping interests and that's a really fun part of this, so I just encourage you know, maybe, people who are listening, who are like me and sometimes get a little bit nervous to impose on others like to just you know take that step and get conversation started.

Jerry Hoepner: Absolutely, that's great advice. Well, fabulous to lead into this discussion about your work with kind of the principles that direct how you work, and I think that emphasis on relationships and the human piece that people with aphasia are people that we need to serve and have their best interest in mind, is a great starting point for our conversation about your work, because that's essentially what it's based on and we'll start with asking you a little bit about your work on addressing those contextual factors and maybe that begins with a definition of contextual factors and how that plays into the questions that you ask in your research.

Tyson Harmon: Yeah, sure absolutely. So, you know early on, is a kind of began thinking about my research interests and such. And really you know, think about some of this in relation to the WHO-ICF which you know, has been kind of connected with aphasia and in the WHO-ICF is many of you now than we think of you know if we're applying this to aphasia the body structures and functions being kind of the aphasia itself and how the brain is affected by stroke, or otherwise, and activities and participation, but the bottom of that model is depicted graphically you have what the WHO-ICF refers to is contextual factors which are the personal and environmental factors and the model really suggests that these contextual factors can play a role at any of these levels to activities participation body structures and functions and I would say kind of the overarching goal of a lot of the work that that I do, and that we do in the aphasia lab here at BYU is really geared towards understanding the impact of those personal and environmental factors on communicative functioning and participation for people with aphasia and you know, I think that this is important because, if we're really going to promote participation for people with aphasia, then we need to first understand the challenges that are inherent in their everyday communication environments. Maybe what are some of those barriers what's prohibiting them from participating as much as they would like and you know, I think that that really is the first step to finding solutions right, we need to understand those challenges, first, so we can come up with solutions that will help them overcome some of those barriers so that's you know, an emphasis will have a lot of the work that we're doing and you know, we talk about in in my lab what I’ve started to refer to as the cognitive challenges for more kind of the environmental conditions that include complex attentional demand, so all of us when we're communicating in real life right, we are communicating in environments in context that are highly demanding and I was having a conversation with a student in my office just earlier today, and we have the door open and there are people talking in the hall right and that's you know, increases the demands that you have during that conversation, and this happens, or you know when we talk at home or in the car, I mean there's a radio on or TV on.

Jerry Hoepner: Agreed, Tyson and that's just that's just real life right?

Tyson Harmon: And so, I think it's important to think about that and think about then hearing kind of cognitive challenges that exist in our everyday communication environments. So, we kind of talked about that aspect, and we also in in my lab talk about what we refer to as social challenges you're more kind of the. Inner, personal aspects of everyday communication that can sometimes pose more demands, so the way that communication partners react to us the emotional reactions that we have when we're engaging in a conversation and so all of this, I think, is really important, too, but again can kind of heighten the demands in ours everyday community communication context, and so it kind of has to do with those contextual factors, some of these things relate to maybe the personal or environmental factors, but we need to really kind of understand you know what is going on in these everyday environments in order to promote that participation, and I think that's it kind of the long term goal of a lot of what we're doing.

Jerry Hoepner: And I think the emphasis on being aware or becoming aware of what those factors are you mentioned the you know talking to a student with people moving around in the hallway and talking and so forth and we're fortunate that often we can communicate without any you know compromise to our message at that point, but certainly with individuals who have aphasia that can play a role in how effectively they communicate and the best place to begin, as you described in providing those supports is understanding what those demands are having a better understanding of that I know that's a big part of all of the recent work that you've published is just becoming more aware of what those demands are so that you can make some sort of an adjustment, or you can train a communication partner to make some adjustment those kinds of things.

Tyson Harmon: Yeah and, in addition to that, I think you know, one of the things that we've been interested in, because I think it makes sense that you know this is going to affect communication and there's such great work on kind of how we support communication for people with aphasia that's so very important but you know we've also been very interested in like how does this actually affect measures of language, right? And are these demands and having a direct impact on spoken language production for people with aphasia and, you know again, kind of thinking about the relationships between kind of their environment and how people with aphasia function in terms of their language abilities.

Jerry Hoepner: Absolutely, so that that's really a good segue into thinking about what are those cognitive challenges that prevent people from participating fully in communication.

Tyson Harmon: Yeah, so you know we kind of just talked about things like people talking in the hall when you're trying to have a conversation, and you know I’d like to talk about a little bit of work that we're doing maybe in relation to kind of background noise. But you know before I go there, maybe a better starting point would be to think about kind of multitasking, which is hard for all of us, right?

Jerry Hoepner: Not sure if any of us really can multitask.

Tyson Harmon: yeah, it's kind of impossible actually, you kind of have to just shift your attention from one thing to another, even though we call it multitasking. But you know some of this work, about cognitive challenges or cognitive demands.

Again, focusing primarily on different types of environmental factors that can tax the attentional system. Actually, was born, as I was working on my dissertation and I became very interested in some of the previous work that had been done about attention and aphasia and some of Laura Murray's work, for example and you know, historically, you know, there was this interest in kind of the late 1990s early 2000s and attention and how that you know related to aphasia and kind of how dual task conditions might affect language, processing and people with aphasia and a lot of that was approached from a theoretical perspective to try to understand kind of the relationship between attention and language and how that is manifest in aphasia and all of that work was so influential in you know what I was thinking about as a doctoral student and I really kind of a approached my questions about attention and cognitive demands from I guess more of a practical perspective which or maybe a clinical perspective is a better way to put it which was more just like well let's figure out like regardless of theoretically the role that attention is playing in language processing per se and how it plays into kind of the big picture of how aphasia is manifest let's just think about how attentional demands are influencing people with aphasia and when they're trying to produce language and also think about you know how they are responding to these attentional demands and so I published an article with some of my colleagues in 2019 That was really kind of building off of some of Murray's work from the 1990s where we used a dual task paradigm to look at the effects of kind of complex attentional demands on narrative retail for people with mild or moderate aphasia and you know, we had for kind of our dual task condition we had these participants retell a story, while performing a tone discrimination tasks they had to discriminate between a high and a low tone, while in the process of retelling the story, we had 10 people with aphasia with moderate aphasia, and I should say 11 people with mild aphasia and impulse control participants and I think our findings were interesting and on one hand, they kind of confirmed what had been shown in the past, which was these attentional demands, you know, really take a toll on language production for people with aphasia more than their peers, who don't have aphasia but the other interesting thing that that we found, which was a little bit of a new insight, I think was that you know the control group so we back up a little bit so as I mentioned before everyone is affected by increased attentional demands right and that's not necessarily surprising and what our control group did is they slowed down significantly when retelling stories in order to maintain their accuracy and so they kind of allow themselves more processing time and then they were able to you know, continue to produce accurate language and the mild aphasia group did something similar, they just slowed down a lot more significantly more than the control group, but they also took a bit of a hit on at least language productivity right they weren't producing as much language during this retail experience so it did kind of affect them differently, even though they were trying to kind of compensate for those demands and the moderate aphasia group and really they took a the biggest hit in their accuracy, where they just and I had a really difficult time even producing accurate language during this story retail task when there were these complex attentional demands. So that's kind of one piece of work that we've done again kind of focused on the multitasking question or what we would call a divided attention condition. And the other one that I mentioned, I could talk about a little bit is a study that we actually just analyzed results from a few months ago, I have a thesis student her name is Brenda Nelson who's worked with me over the past two years, and she just graduated and has really done some great work during her time as graduate student here but she was kind of interested in in taking this idea of attentional demands and investigating and in a similar way how background noise might affect spoken language for people with aphasia so this is something we haven't even submitted for publication yet. We're kind of in the process of converting the thesis into an article, but so I’m not going to go into a lot of depth about the results or anything but I think it's a really interesting question that that Brenda has pursued and she's developed these different background noise conditions where she's tried to kind of simulate some types of everyday communication environments. So, there's a cocktail speech condition there's a lively conversation. There's a one-sided phone conversation. We were thinking, okay if somebody with aphasia was kind of in line at a grocery store and they're trying to have a conversation and there's somebody behind them on the phone what would that be like so it was really fun to kind of develop some of these conditions and think about how they might you know simulate some types of everyday communication contacts and yeah I think there there's some kind of interesting preliminary findings from her thesis work that you all can look out for the hopefully we'll get out soon so.

Jerry Hoepner: Absolutely, and just as a little bit of a preview, more than just changes to language production or lexical production but also changes to speech and while speech for sure, in terms of the fluency of speech and so forth Is that correct.

Tyson Harmon: Yeah so, I mean I think we're, you know, one of the things that we're seeing across these background noise conditions, is it seems like you know speech efficiency or the information units per word that seems to be one of the key measures is really taking a hit for our aphasia participants, but not making you know the background noise isn't affecting that for our control group. And again, this is kind of preliminary work, so I don't think it's confirmatory by any means, but I think it's kind of pointing in this direction that yeah There does seem to be maybe some real changes that are that are happening in in terms of just spoken language, and then I you know there's kind of a qualitative piece of this to where we've interviewed these people after they've participated, we haven't even really started to analyze this part truly we're kind of in the process of just you know, really familiarizing ourselves with the data which is kind of the first step of this analysis process and I have another thesis student working on that that qualitative aspect of the question, but I had a conversation with her, the other day, and again like and I guess take this with a grain of salt, because this was just a conversation after she has spent like hours and hours with these data. So, I think it's meaningful but, again, we haven't done a true analysis, but one of the things that's really standing out to her, is that the facial participants really seem to be talking quite a bit about how much they have to focus on producing language when there's background noise. And the control participants are like oh I didn't I didn't even notice it, they just like totally you know, are able to kind of filter it out, it seems like based on some of these comments, so I found that interesting again we'll get some more kind of concrete data that will be able to report on, hopefully, in the next month or so.

Jerry Hoepner: So that'll be interesting to find out, I mean it's, it reminds me of something that a lot of my clients with mild aphasia say right, even when their production and their fluency is pretty normal they talk about that effort in order to be at that level I am working really, really hard. It's not as though it just rolls off the tongue it's difficult work to be a success, successful from a communication standpoint as they are, so I think that's a really important point to highlight as well.

Tyson Harmon: Yeah, well in it, I guess, one other comment about that is um you know from some of the qualitative data we collected in conjunction with the multitasking project. You know that was another thing that kind of stood out to us as people were talking about how like they close their eyes or did you know different behaviors to essentially limit the amount of you know stimulation that they were receiving from the environment seemed in an effort to be able to really kind of put all of their resources into the language task right.

Jerry Hoepner: Right yeah, that makes sense. Do you have a sense of how those kinds of cognitive challenges and demands affect their participation in everyday communication?

Tyson Harmon: Yeah, that's such a great question we, and we have some work that we're actually doing right now, I think, is giving us, you know some preliminary kind of findings in that direction and so I guess you know to start out one of the things that I'll say in response to that question is, we do have a qualitative study that was published in 2020 where people kind of connect some of these intentionally demanding people with aphasia connect some of these potentially demanding kind of experimental conditions to what they experienced in their real life, and they are kind of making this connection they seems like and it's potentially demanding to do things like eat dinner with friends or talk, while driving they've had experiences I remember one of our participants talking about trying to go back to work, and it being so hard for her to have her boss talk to her, while she was trying to do something on the computer so just attending to those things at the same time. People have talked about kind of trying to control the TV while listening to their spouse obviously group settings tend to be a challenge, but in relation to your question, more directly. I think one thing that we're interested in is you know, is this actually affecting participation and you know in both have kind of the studies that I mentioned more from the qualitative standpoint, it does seem that people are kind of talking about this, how they're discouraged from participating when these demands are high. I remember one participant in particular, said that the some of the difficulties associated with these attention and demanding environments caused him to, and this is a direct quote from him, he said quote he became quote discouraged from saying anything. So, yeah, I mean again this is nothing confirmatory, but it makes sense right that, like when demands are so high, then you know people with aphasia going to have a harder time engaging in these communication opportunities yeah.

Jerry Hoepner: Absolutely, and it kind of reminds me of some of the work by Dalemens  that said, you know you can have a hard time initiating those interactions even when you're surrounded by people I mean yeah being in a context with people communicating doesn't necessarily mean that you're participating in that context, and if the demands are really hard, especially in a group context you may be there, but not really engaging fully in that interaction so.

Tyson Harmon: Yeah, absolutely. In reference to Dalemans’ work, which is just awesome, by the way, I really admire that work um you know just that that idea that you know engagement and participation isn't just about the amount of communication and experiences or opportunities right actually it's what people with aphasia really want is they want to engage in meaningful ways and maybe if they have a you know a smaller quantity of communication experiences, but those are meaningful and then that's really what matters, and I think that is connected to what we're talking about here because you know we're cognizant of kind of these demands, and the effect that they can have on meaningful engagement from people with aphasia. Then you know we're going to be better enabled to kind of think about you know how to prepare our clients for engaging in meaningful ways and supporting people with aphasia so that they can have that meaningful engagement yeah.

Jerry Hoepner: Absolutely, I think that goes back to Dalemans’ comment about people with aphasia would prefer smaller quantities of high-quality meaningful engagement, rather than big quantities of not so meaningful interaction so yeah that's a really great connection to your work for sure. Well, maybe we can move towards a discussion about social challenges and what the factors are that contribute to those social challenges for communication after vision.

Tyson Harmon: Yeah, sure I’d be happy to talk about that so. You know, first as a disclaimer you know there's all sorts of things we could think about in terms of cognitive and social challenges and we're really just kind of scratching the surface, on some of this with some of the work that I’ve done in the last few years and you know I’m really interested in how aphasia affects relationships in general but you know what I’d really like to kind of focus on during this interviews just some of the work that we've done in relation to kind of communication partner responsiveness and kind of emotional reactions, which is something that I’ve become increasingly interested in as well so should we start with maybe the communication partner responsiveness piece. I think that's a really great place to start I just think that when I read that work it's just such a fascinating and important concept right, the amount of.

Jerry Hoepner: Investment that the individual with aphasia perceives on the part of their partner and in terms of their interactions dictates how successful, they are the amount of stress that they carry about this, so I don't want to take all of your words out of your mouth so go ahead and delve into that just a little bit.

Tyson Harmon: Yeah absolutely um yeah so it just is, as you were saying you know we published, and this is part of my dissertation work they did with Katarina and Adam and published this study in 2020 and the essence was that we were interested in how responsiveness from a communication partner influenced spoken language directly for people with aphasia again, we had to kind of moderate to mild aphasia group and you know this was kind of a fun and interesting experiment to develop. We kind of thought about some of the principles and concepts and behaviors that are often involved in communication partner, training, but we wanted to develop something that you know, would allow people with aphasia to have an experience communicating with somebody who is you know, providing more kind of supportive mostly nonverbal feedback, so they weren't necessarily. You know, providing supports to help them get their message out, but they were just showing you know by how responsive, they were you know this kind of interest and engagement when the person with aphasia was talking, and so we had our participants with aphasia.

Jerry Hoepner: And can I interrupt for just a second because I wanted to highlight something that you talked about in the article about kind of useful or effective back channeling versus less effective, or almost intrusive back channeling. That just is so important in terms of thinking about those partners and how they kind of induce struggle or challenge, or how they support that success sorry to interrupt you sorry.

Tyson Harmon: Yeah no, absolutely yes. We kind of talked about this in the article is kind of these backchannel responses right where you know the participant or in this case, the case of this study, our participants with aphasia we're talking in in in the case of the supportive communication partners in the article we refer to these as responsive communication partners they're providing these backchannel responses. They show interest so they're nodding their head they're giving affirmations like they have an open body posture kind of leaning forward, you know all of these things that we would expect to show kind of interest and engagement and so that was kind of one of the conditions so who participants with aphasia were retelling the story with that partner, and in this case, we had students who were trained and we kind of had a protocol developed and made sure that we had fidelity that everybody kind of got a similar experience and then the non-supportive or unresponsive condition was where the communication partner was you know kind of showing these nonverbal behaviors they suggested disinterest they had a closed body posture they had poor eye contact and kind of this neutral facial expression every 20 seconds, or so it kind of just like looked away or glanced at their phone that was on the table and so we were able to kind of go through this and bring people through this experimental protocol, and then you know measure the outcomes of this in terms of spoken language production. Frankly, you know there wasn't a huge effect on the actual measures of language in this unresponsive communication partner condition. People in general did kind of slow down and we're a bit more can disfluent when talking to the unresponsive communication partner it wasn't much different between people with aphasia in the control group. Actually, the control group seemed to do that a bit more than the aphasia group not significantly, but just kind of on average.

But what was really interesting about this study and what I feel like one of the really key findings was at least for me was that when we analyzed the qualitative reports so we interviewed our participants after they went through this experimental protocol, and then we analyzed their comments about the experience, people with aphasia were talking about strong negative emotional reactions in response to that unresponsive communication partner and our control group they hardly talked about emotional reactions at all, and when they did, then they were kind of neutral, or sometimes even like more positive emotional reactions and, in that, combined with the fact that you know, in general, when kind of having this experience talking to an unresponsive communication partner people were self-reporting, you know kind of increased stress. I think that's important, and I think that you know the other thing that kind of adds to that that body of work is an additional kind of qualitative study that we did where you know people with aphasia were in at this point talking more about just their everyday communication situations and talked about how often they communicate with people who seem to be in a rush or who just give up on them or show signs of disrespect or disinterest and I mean this surreal thing that you know people, people with aphasia are experiencing and maybe it's not taking a huge hole in the moment on their language production but you know, I think that it has the potential to lead to these important kind of psychosocial impacts that may discourage participation down the road. And I mean, frankly in our qualitative work, one of the things that was surprising to us was how many participants described feeling kind of unsupported when communicating with familiar communication partners like family and friends which is why we thought about it more we were like okay I kind of makes sense because you know we're so close to those people we really get like the raw experience with them but you know, so I guess the point there is that, like if this is something that is a reality for people with aphasia and even when people aren't like blatantly poor communication partners, aren't blatantly rude like the notice when people are in a rush or when they you know aren't are not fully engaged or disinterested or ready for the conversation to be over. And it does have an effect, maybe even you know, maybe not on how they're producing language but on how they're feeling and the emotions that they're experiencing during that communicative exchange.

Jerry Hoepner: Yeah I think that's a really important thing to keep in mind, and both of those 2020 papers and we'll have all of these articles referenced at the end, so people can look them up and follow this important work but in both of those cases, you have listeners, who are unresponsive or less responsive in a hurry and that has that impact on their emotional kind of response you mentioned it may affect participation, but I almost wonder if it would affect their, you know, even though it didn't affect their language in that moment and wonder what the downstream effects are of you know, being with a partner who consistently is not responsive, in that way and you talked a little bit in one of those articles about what the person with aphasia might do to be able to kind of ameliorate or contend with that lack of responsiveness, you want to talk about that, just a little bit.

Tyson Harmon: Yeah and you know I think probably the, the best way to address, that is to talk a little bit about some of our findings from the kind of fully qualitative article, you know, one of the things that has been really intriguing for me to think about from the qualitative results of that study is strategies that some of our participants with aphasia were talking about that they use to kind of cope with the negative emotional responses and also some kind of the negative thoughts that are sometimes associated with the communication difficulties. So yeah, so why don't I maybe try to paint a little bit of a picture here for and what some of those findings were. So, you know, in that, in that study, one of the things that again just to kind of return to this, we were focused really on like everyday communication experiences so What are they doing in their actual life as they go out and communicate and kind of one of the themes was all about strategies that people with aphasia were using and you know it I think not necessarily so surprisingly most of them were talking about what I would consider behavioral strategies, so these were ways that they change their behaviors to kind of be more successful and in their communication experiences but what was more intriguing to me was the subset of participants who talked about what I would refer to as cognitive strategies things that they did to kind of change the way they were thinking or feeling in order to cope with these everyday communication challenges that they experienced and one of the things I think is interesting about what we learned from these participants is, I think it could you know potentially kind of serve as a launch point for some of the solutions that we might think about in terms of how to address some of this we're pretty good at the behavioral piece like we talked to people with aphasia about disclosing their aphasia and about you know advocating for themselves during conversation I think in these are things that you know they seem to be doing and they're obviously very important but maybe we don't think as much about how to address or how to help people with aphasia use strategies to cope with some of the negative thoughts and feelings, and so I think it's something that maybe we should think about a little bit more, and, obviously, for me, learning from people with aphasia what's already working for them is a great place to start. So, what we what we learned from these participants and, as I mentioned, it was just a subset of participants, I think it was about if I’m remembering correctly eight out of 21 participants that mentioned these strategies was that we kind of categorize these into three different areas of kind of things that they were doing. The first one was that some of these participants were talking about ways that they kind of changed their mindset to start thinking about challenges as opportunities for growth, and let me, maybe just read a couple quotes from our actual participants. One of them said listening is better than talking, most people doesn't listen, I mean I think I'm a better listener, and so this participant really thought that, because of aphasia become better at listening which is a bit of a kind of cognitive restructuring that probably happened right where instead of thinking about aphasia as a threat. She started to think about it as just a challenge that she could kind of face and use to grow, which I think is really interesting and there was another participant, who said aphasia is a good thing, not a bad thing so just again kind of looking at this and maybe a positive light, which really gets to you know some strategies that are used in in counseling psychology related to cognitive behavioral therapy, which is kind of that cognitive restructuring and kind of changing your thoughts I think you know, there are other ways to approach this from other kind of counseling psychology perspectives like acceptance and commitment therapy as well where you know they talk about cognitive diffusion and this idea of kind of separating yourself from your thoughts so, and you know you have kind of these negative thoughts that you recognize that those don't define you and they're not always true and just kind of letting them exist without having to combat them. So I think this is interesting and I actually want to acknowledge, like some of the great work that is happening right now throughout the world, related to kind of addressing some of these issues and I mean we could, I think, talk about several different groups are doing really interesting things kind of looking at how to integrate some of these counseling approaches with the work that we do in speech pathology with aphasia population. You know the other thing, so, in addition to change their mindset thinking of challenges is growth opportunities, some of our participants talked about empathy I really love this quote, so one of our participants said, ‘some people are nice and some people aren't.’ I try to remember that you don't know what other people are going through, because everybody's living a tough life and you don't know so obviously this person with more mild aphasia, but yeah I just I think this kind of got me thinking about okay like are there ways that we can you know train our clients to empathize and take the perspective of others and that's a I think an interesting thing to think about and then the third kind of category of these more cognitive strategies was positive attitudes. And again, and I think there's some great work and thought being put into how to integrate some you know positive psychology into the work that we do. I think positive self-talk seems to have a place in kind of helping people with aphasia address some of these negative thoughts and feelings that they might experience and so you know I think there's just some interesting kind of strategies that already seem to be working for a subset of our participants with aphasia but one thing that I didn't highlight, which I think I should is that almost all of these participants who talked about these cognitive strategies had been living with aphasia for a really long time, so I think it was like you know over 70% of the participants that that mentioned these. And so, you know that makes me wonder, are some of the you know the people who are living with aphasia having to kind of live with this for a long time before they start really getting a handle on some of the you know, some effective ways to deal with those negative thoughts and feelings and is there a way that we as speech pathologist in our role as communication counselors, right? Addressing thoughts feelings attitudes beliefs, as they relate to the communication disorder is there a way that we can maybe step in and integrate some of that earlier on which would be helpful to more people. So again, those are just some questions that I have related to some of this, but I think you know some of the solutions in my thinking, right now, some of the solutions that are really going to make the most impact in this space are those that are addressing both communication and, and so I guess the language side of aphasia as well as the psychosocial impact of aphasia as kind of a package deal.

Jerry Hoepner: Yeah, I really think that ties things up really nicely in terms of this discussion, I love the term ‘communication counselors’ or however you frame that. Sounds very much like something Katarina would say.

Tyson Harmon: Maybe I got that from her, actually.

Jerry Hoepner: Not sure, I’m going to tell her you came up with it first so it was really good. I, and I also want to emphasize the statement that you made about, you know, they've got these strategies but they've been living with aphasia for a long time, and how long did it take them to develop these strategies and is there a way that we can kind of shorten that trajectory and get them there a little bit more quickly, you know as I read that article I was thinking of the situations that we all have when we're having a conversation with someone who, maybe isn't paying attention to or we may be reading something into what they're thinking in the moment like, ooh the way they looked at me. Don't they like me? Or what a dumb idea that I just shared or whatever those internal thoughts are and having strategies specifically to deal with that have been kind of vetted at this point, a little bit by individuals with aphasia eight individuals with aphasia, but I think it's an interesting way to think about moving them closer to that by those strategies of changing their mindset of having empathy for their communication partners and being able to take their perspectives because they might be challenged at that moment as well, and then the positive self-talk and focusing on those positive attitudes as a way to kind of break that internal loop of, “I wonder what they're thinking about me or it doesn't seem like they're interested or it doesn't seem like they want to take the time.” So, I think those three things are a really good direction for us to take in terms of hopefully shortening that trajectory of people not having to figure this out over the course of eight to 10 years but, like you said, us as communication counselors being able to move them there a little bit more quickly if we know some strategies that work.

Tyson Harmon: Yeah, and I mean I, I agree, and I just I think, you know, this obviously is not like, you know, the solution, but I think it's a starting point. I think that's one of the things I love about qualitative work is that, you know, sometimes an appropriate starting point can be what's already working for a subset of people with aphasia and we can kind of in a way, almost follow their lead into kind of discovering ways to help more people and so I've really enjoyed kind of thinking about some of the work that I do in in that regard because, and I just think that we have so much to learn from the people that we serve, and hopefully we can help them learn from each other as well.

Jerry Hoepner: Absolutely, and what a great way to come full circle, as we started talking about stakeholder engaged research and for us to take their lead and to follow what they're already doing to be successful, so a fantastic way to kind of wrap things up. Boy, we could talk all afternoon, but this has been a terrific conversation, and thank you Tyson for joining us in this conversation and sharing these meaningful things and I thank you so much for having me.

Tyson Harmon: Absolutely.

Jerry Hoepner: On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.

Resources:

Harmon, T. G. (2020). Everyday communication challenges in aphasia: Descriptions of experiences and coping strategies. Aphasiology, 34(10), 1270-1290.

Harmon, T. G., Jacks, A., Haley, K. L., & Bailliard, A. (2020). How responsiveness from a communication partner affects story retell in aphasia: Quantitative and qualitative findings. American journal of speech-language pathology, 29(1), 142-156.

Harmon, T. G., Jacks, A., Haley, K. L., & Bailliard, A. (2019). Dual-task effects on story retell for participants with moderate, mild, or no aphasia: Quantitative and qualitative findings. Journal of Speech, Language, and Hearing Research, 62(6), 1890-1905.

Harmon, T.G., Nielsen, C., Loveridge, C., & Williams, C. (under revision). Effects of positive and negative emotion on picture naming for people with mild to moderate aphasia. 

Scadden, B.D. (2020). The Impact of Background Noise on the Spoken Language of People with Mild to Moderate Aphasia: A Preliminary Investigation. Master’s Thesis at Brigham Young University. T. Harmon thesis chair/mentor. 

During this episode, Dr. Janet Patterson, Research Speech-Language Pathologist at the VA Northern California Healthcare System, speaks with Dr. Brielle Stark about the Distinguished Aphasia Scholar USA Award from the Tavistock Trust, technology, and aphasia rehabilitation, measuring discourse, and FOQUSAphasia.

In today’s episode you will hear about:

• Applications of technology to aphasia treatment, including provision of virtual care,
• Ideas for measuring discourse in a clinical environment, and
• FOQUSAphasia

Dr. Janet Patterson: 

Welcome to this edition of Aphasia Access Podversations, a series of conversations about community aphasia programs that follow the LPAA model. My name is Janet Patterson, and I am a research speech-language pathologist at the VA Northern California Health Care System in Martinez, California. Today I am pleased to be talking with Dr. Brielle Stark, who is an assistant professor in the Department of Speech Language and Hearing Sciences at Indiana University in Bloomington, Indiana. Dr. Stark was a Gates Cambridge Trust scholar during her doctoral work, which focused on the effectiveness and feasibility of iPad-delivered speech-language therapy in adults with post-stroke aphasia. Using MRI, she also evaluated the neural correlates of inner speech in this population. During her postdoctoral fellowship, she researched brain and genetic biomarkers related to acquired language difficulties and language improvements following transcranial direct current stimulation in post-stroke aphasia. Presently, she's interested in modeling and predicting language reorganization recovery in acquired adult language disorders and in older adults, using structural and functional brain markers acquired from MRI. Brie is a co-founder of FOQUSAphasia, which brings together experts to improve the research on spoken discourse, specific to aphasia. Finally, she's interested in the relationship between manual gesture and language and communication and brain injury. In 2021, Brie was named a Distinguished Aphasia Scholar USA by the Tavistock Trust UK. The trust aims to help improve the quality of life for those with aphasia, their families and care partners. Congratulations on this honor Brie, and welcome to Aphasia Access Podcast.

Dr. Brielle Stark:  Pleasure to be here and finally to meet you in person. I say that with quotes since we're on a video, but close enough. 

Janet: Agreed. I feel the same Brie. You were named to Tavistock Trust Distinguished Scholar in 2021. Congratulations again, as you have joined a talented and dedicated group of individuals. How has the Tavistock Award influenced your work in aphasia, both your clinical and research efforts?

Brie: Yeah, first, I was super humbled to join this group I admire all of the prior and current Tavistock Trust Award winners and also work with quite a few of them. It's a privilege to be a part of this group. But, you know, for me, something I've always thought about is, we can do science for science’s sake, but for me, it's a lot more meaningful when we can make the science create meaningful outcomes for people with aphasia, include people with aphasia in designing the studies, and giving feedback on the studies. That's something I've tried to do throughout my career and hopefully am getting better and better at the more I do it. For me, that's the main point, is that we're doing science that's meaningful. That's our lab motto as well.

Janet: Isn't that so important now, because we read a lot of publications about treatments or ideas or assessments, but then they become very difficult to implement in the clinic. That's the whole world of implementation science, in fact we were talking about that just a little bit earlier, the challenge of implementing a treatment that we read about.

Brie: It's so difficult, and I have so much respect for people who work in the field of implementation science. I've dipped my toes into it and then promptly run away on a few occasions. At some point, I'll be brave enough to go back there. As a researcher without a clinical license, I often rely on clinicians to really feed back to me, is this worthwhile? Can we do this? Is this feasible? That's a really important part of my research and what my lab does, trying to make sure we're doing things that are useful.

Janet: Good for you because that is so very important. One of your research interests is technology, as it can be used with individuals with aphasia. As I mentioned earlier, this encompasses a broad range of topics such as iPads speech-language pathology, transcranial direct current stimulation, virtual treatment, and in particular, I want to highlight mentoring women in technology. Across all of these, is there a theme or an idea, or how do you see technology, such as you're using, influencing our clinical and research work with persons with aphasia?

Brie: Yeah, I love technology. Absolutely. I'm a member of a group here at Indiana University called the Center for Women and Technology. I've learned a lot through that group. For me, technology is a fantastic means of communication. Throughout my years, working with older adults as well as people with aphasia, you know, technology can really overcome a lot of barriers that are there for individuals. My prime example is that kind of feeling of aloneness, when you're recovering from a stroke when you're living with aphasia, and technology has a huge impact and kind of remediating that in many ways. So that's what got me interested in doing the iPad therapy many, many years ago. And it's kind of kept me interested, because I think we're moving toward a world where we want to create as many opportunities to communicate as possible. I think technology is one way to do that -not the only way, but definitely one way to do that.

Janet: You investigated telehealth and delivering therapy through telehealth didn't you, if I recall correctly,

Brie: We did a diagnostic mostly through a virtual platform. But the goal is actually, and we just recently got funding to do more of a telehealth model, we just recently finished a design where we were testing its feasibility. We brought people back for two different time points about a week apart. We wanted to make sure that people were comfortable with the task, we had everything lined up in terms of delivering things well, and also reliably amongst our testers. Now that we have that in place, and we just recently pushed out a paper on our actual methods, we're really excited to use it for an actual telehealth purpose.

Janet: Telehealth is so important, I think, and you know, at the VA, we've done quite a bit of that, in both assessment and treatment. I know that there can be significant challenges if the person doesn't have enough bandwidth, if they can't turn on their computer even. I applaud you for jumping into this arena to try to figure out the reliability and how valuable technology can be.

Brie: It is a tough one, I think our biggest hurdle to overcome has actually been the encryption on some of these HIPAA compliant conferencing apps where you just have to jump through about 12 different hoops to make sure you're logged in, you're not a robot, you're not someone who's going to, as they say, hack the conversation. We've had a few issues with that. But the other issue is obviously technology doesn't overcome all of the issues with reaching certain populations. I live in Indiana, I live in a relatively rural part of Indiana and still high-speed internet is not everywhere around here. We're not reaching everyone, but it's definitely one means of reaching more people.

Janet: I think so too, you know, you hear people saying, well, nobody puts down their phones these days, everybody's nose is buried in technology. I used to think that maybe that was a bad thing, but I'm not so sure now, especially when you mentioned earlier about using technology to address isolation that may occur with people with aphasia.

Brie: Yeah, I agree. I think it's a fine line between technology being an opportunity versus the only opportunity. I think we need to just make sure it's available if that is the preferred method. For many, I mean many in our clinic here, it's not the preferred method, so having the opportunity is quite nice. We recently had one of our participants in our aphasia group here move out of state, but wanted to stay in touch with their friends, so they often use technology to make sure that they can keep in touch with the group back here in Indiana. I think that's a great way to show when it is useful, even though that's not maybe their preferred method.

Janet: Well, good, I hope you keep going along this line of clinical research. Let me turn to another topic that's of interest to you - language organization in the brain. You've been looking at both neurotypical individuals and persons with aphasia. What are some of the findings from this area of work? And then, how do you see them as an application in our efforts in aphasia rehabilitation?

Brie: Yeah, that's a great question. I absolutely love neuroscience, it's one of the things I love teaching as well and I have that opportunity here with our masters SLP students, which is my favorite. For me, the first thing I was interested in was just a better understanding of how our brain actually does language. That is such a complicated question. For me, I came into it very much from that theoretical point of view, and a lot of my earlier work still looks at that, and I collaborate with people who are still really looking at that. More recently, I've been focused on to what extent can we learn something about the brain that tells us about some potential for recovery, or in some cases, a potential for decline? It’s so important to try and figure out as much as we can, not necessarily to predict anything, but to improve our ability to tailor our treatments and to have candid discussions with people we're working with. I'm a pretty firm believer that we're never going to predict who's going to recover and who's going to decline because I think there are too many personal factors at play. But I think brain information can give us a lot of really useful things. An example being we've done some work with some collaborators on leukoaraiosis, which is white matter disease, mostly in older adults. it's pretty typical and many older adults, but it seems to be pretty prevalent in people who have had strokes as well. The extent to which there is more leukoaraiosis, in addition to, and even in most cases, is a better predictor than lesion volume itself, in stating whether someone will decline in their language abilities or not. It's this idea that there's something going on at the overall brain health level, that's important to understand. It's not just the stroke that's going to affect how someone is able to recover, for example. I think that's helped us think a little bit more globally about why we care about the brain and how we can use it in helping us understand these patterns.

Janet:  Your research is still at the early stages, and not yet with direct application to an individual sitting in front of you, right?

Brie: That's right. That's right. I think we I think we have a long way to go. Honestly, I think it's a design question, as well as a feasibility question. What I mean by that is the variability in people with aphasia is very large, right? We have individuals with different ages, who had strokes at young versus old age, who had different brain health factors. Then also, you have such different presentations of aphasia. It gets difficult, I think, to model brain changes when you have such variability. If you look at all of the work that's out there in neuroscience, it's lots of group studies of typical young adults. There is not very much variability in behavior there compared with what we're working with in terms of people who have language disorders. We have a long way to go, I think in making sure that we're answering the right questions and using the right designs, but I think we're getting closer.

Janet: I agree with that. I'll be looking forward to some of your work. Looking from the behavioral standpoint, as you mentioned, people with aphasia are so variable, not only in their type of aphasia, or their aphasia characteristics, but also in their personal characteristics, their interest in treatment, their ability to get to the clinic, their technology experience. All of these factors, this variability, contributes, I think, to a person's success or lack of success in treatment, and in general, in coping and living with aphasia. Taking all that into consideration when you're looking at brain function and language organization is very important.

Brie: Absolutely. Brain is one piece of the puzzle, right? And it doesn't, it certainly doesn't explain everything. I always chat with my students about the fact that motivation is so hard to quantify, to your point. I don't think that's something we're ever going to figure out as a brain basis, right? Someone's personal motivation to go to therapy, as you stated, or someone's environment, which is something we encounter a lot, like what's their social network like? What's their support system like? We're never going to be able to answer those questions with brain data alone. I think it's important to have that holistic point of view where you do understand the other factors at play. That's also why I like this LPAA model because there's an understanding of all of these factors contributing to the single person. I like that idea of designing studies in that way, as well.

Janet: We've been doing a bit of work investigating motivation, a couple colleagues and myself. We just keep going down this path and finding ourselves almost coming back to where we started, and not so much full circle, but full spiral because we seem to be back at the same point, but we're better, we're a little further advanced in our knowledge, but it's so difficult to understand the concept of motivation. I think that, as you mentioned a few minutes ago, clinicians or anybody really, but when we think about people who are working with people with aphasia, we tend to say, well, that person is motivated, or they're not motivated, but we haven't measured their motivation, we don't know what contributes to it. All of these factors, then are just part of what the brain does is it tries to reorganize itself and think through language and live with aphasia.

Brie: Absolutely, and kudos to you. That sounds like an intimidating research question.

Janet: It is, believe me, it certainly is. Let's turn now to discussing discourse production and analysis and aphasia, which I know has come to the forefront in your work lately. This topic, I think, has a long and storied history, long history. Despite many publications on this topic, clinicians and researchers remain in disagreement, or they lack clarity on the best way forward to use discourse analysis in a meaningful way in aphasia rehabilitation and clinical research. How did you become interested in discourse measurement in aphasia?

Brie: Yeah, that's a great question, and also a great synopsis of the history. I think there is an extremely long history and discourse is so fascinating because it is so interdisciplinary. I mean, discourse is interesting to people in linguistics, psychology, neuroscience, communication sciences and disorders, philosophy, it just goes across a lot of different disciplines. For me, I have always been interested in communication that looks like real life. Even in my Ph.D., I started focusing on it, reading a bit more about it, that continued through my postdoc, when I had an opportunity to do more independent research. Now in my assistant professor position, I decided that even though it scared me a little bit, I was going to tackle this. This scare is still real, but it's definitely fun. The people who are interested in discourse are some of the best people I've ever met. They're up for the challenge. That's why I've continued to really push, what I think is a kind of a difficult ball, up a hill, over these past few years. I'm interested in using discourse as a more natural outcome of therapy, but also a more natural outcome of just how people communicate, how we can actually talk about how people communicate. I'm all for naming outcomes as well, I think there's a place for those, I think there's a place for individual outcomes like that. I think discourse has a long way to go before it can come to the same standard and be used in the same way as a lot of the outcomes we have out there.

Janet: Isn't discourse what we do? When we tell jokes, when we tell stories, when we have conversations, when we connect any kind of speech, when we talk to ourselves. It is what we do. But it's so variable. You're right, there are so many challenges in trying to figure it out. I'm glad you're rolling that ball up the hill, and you have a lot of help to get that ball to the top one of these days.

Brie: I thank goodness for the help. Something I've just chosen to tackle is, and I'm really interested in, is how discourse changes according to the scenario that we're in. I really am interested in that. You know, the tasks that we give people to elicit language, how different is a discourse going to be if they're restricted to looking at a picture versus when they have to bring in some autobiographical memory, when they're talking about themselves, when it's emotional. That's something I'm super interested in, and I've done a lot of research on that. I'd like to now include people with aphasia in building those meaningful tasks. What do individuals with aphasia feel like elicits the language that reminds them the most of themselves? Some of the feedback we get is, “you are making me tell Cinderella again?” That type of feedback makes me feel like we're probably not asking the right question to get the best language sample from this person. That's something we're pursuing, my colleague and I, we're going to start really just asking the questions such as, “What do you feel like most resembles how you communicate on a daily basis”

Janet: There are several different kinds of discourse, we all we all know that. I just think about the life of anyone, the life of a person with aphasia, they want to tell a joke, or they want to tell a story, they want to whisper an endearment to a person who is close to them, they want to order coffee at the coffee shop, all those are such different kinds of discourse. Maybe they're not long, just a few words, but they are discourse. They do carry with them different requirements to be able to be successful in that. So good job for you for going in that direction.

Brie: I think it's really interesting. I think the other side of that is what do we extract from the discourse to actually demonstrate what we're looking for, right? I've chosen over the past few years, just because of my personal interest, to look at more linguistic things, an example is mean length of utterance. I work with colleagues, a Tavistock Trust winner, like Dr. Jessica Richardson, who works more on the functional side, you know, how many main concepts is someone producing? I think we're starting to get a better idea of what to actually pull out of the discourse to match what we think we want to measure. I think we're getting better at that, and that's something that I want to keep pushing for.

Janet: Good. I hope you do. I think that you're doing that through FOQUSAphasia. You're a co-founder of FOQUSAphasia. By the way, for our listeners, the link to FOQUSAphasia will appear on the Show Notes that accompany this podcast. It’s FOQUSAphasia.com, right?

Brie: Yep, that's it.

Janet: You can access it that way. Anyway, you are co-founder of FOQUSAphasia, which is a group of researchers and clinicians who value the evidence derived from spoken discourse, and who want to improve the state of research, which will eventually translate into improved evidence-based practice for assessment and treatment of spoken discourse and aphasia. Tell me a bit about FOQUSAphasia, and the work this group is doing to support discourse analysis,

Brie: I would love to, it was co-founded by about four of us, gosh, back in 2019, actually, at a Clinical Aphasiology Conference in beautiful Montana. We decided that we wanted a venue where people could (1) network with others interested in this area, and (2) band together to actually achieve some of the goals that all of us clearly shared. As an example, we have one group that focused on best practices, and right after this meeting, I'm going to submit a paper from this group that's actually looking at standards for reporting on discourse. Similar to the Roma Consensus that Dr. Sarah Wallace worked on and spearheaded, and that you were involved, we went through a similar expert panel. We wanted to figure out how to enhance reproducibility, replicability, and the ability to just make assumptions across papers and discourse, what actually needed to be the bare minimum thing were reporting and had studied. That's what we asked people. We're going to put out a list of what we think is necessary and recommended to help create that foundation for the spoken discourse studies. We actually made it a little bit broader than just post-stroke aphasia, we were thinking more adult language acquired disorders. That's coming soon and it's one example of a band of people working together to try and achieve a goal. Another one has been highlighting early career researchers and clinicians in our lecture series. We've had a lot of people working on their Ph.D.’s, at a postdoc level, or people like me in their early career, come and talk about what they're doing with discourse. That's been really well received, we get lots of people coming to those and they're all archived for free on our YouTube channel as well. That's been great for visibility and getting people connected.

Janet: How can someone join FOQUSAphasia?

Brie: It's totally free. If you go to FOQUSAphasia.com, which is spelled FOQUSAphasia.com - Q stands for Quality - you can join us a member and then that gets you access to our forum, and also our mailing list. We send out upcoming events. and also use the forum to advertise studies to find other collaborators for grants, for projects. It’s very much meant to be a clinician and researcher home for people who are interested in discourse from a variety of backgrounds.

Janet:  I've been on the site and I very much like some of the explanations you give about discourse, and how you describe the questions and the concerns that people have as we investigate it. I'm enthusiastic about FOQUSAphasia and hope that some of our listeners will join it and become part of this discussion as we figure out how better to think about discourse measurement. As I mentioned, I think Brie, I believe discourse comprehension and production is important, just in life, but especially it's important as we think about aphasia rehabilitation, because it is the heart of communication and connects us in so many ways. As FOQUSAphasia and other aphasia researchers around the world grapple with this complex topic and think about how best to measure discourse in individuals with aphasia. Are there pearls of wisdom you might offer to our listeners that they can put into practice tomorrow as they assess and treat their clients with aphasia?

Brie:  Well, that's a deep question. I think, yes. For me, the biggest thing is to come at it from a point of view of what is my treatment targeting, and what measure would be the most appropriate outcome? All of us have had linguistic training. We've taken psychology classes, we've taken all sorts of classes to let us think about the fact that if we're trying to measure something related to improved grammar, for instance, we should probably be thinking about a discourse that's going to be a little bit more robust in the type of things we're asking an individual to do and the type of grammar they're trying to produce. A good example is that there are a lot of treatments out there that are really focused on, let's say, word finding, semantic feature analysis, for example. If we're thinking of the best way to approximate word finding and discourse, we probably want to give people a sufficiently difficult example to try and make them probe for new words, right? So compared to giving them a picture that they're just looking at and just naming things, maybe we want to increase that difficulty a little bit and have some different prompts that we can ask them and measure. I know that sounds so simple, and so intuitive, but I don't think it happens a lot. I think people rely on using, for example, the picture description from the Western Aphasia Battery (Kertesz, 2006) as outcome, without thinking about if it is actually going to show improvement for the reasons I just stated? I think that's just having that critical thinking of what am I actually expecting, will help us to approach this. There are also some great perceptual tools that are now coming out. There's something called the Core Lexicon Checklist (e.g., Dalton et al, 2020) that's great to use on the ground. When you're looking for lexical access, that's a great one that's just come out. And I think those perceptual tools are going to keep getting better because we know that people who are on the ground in the clinic don't have a whole lot of time to sit there and analyze and transcribe everything. I think there are a lot of us trying to create tools right now that we can actually implement.

Janet: I think about some of the tools we have for discourse analysis, and they are very good. But as you mentioned, they take an enormous amount of time. These tools take a lot of time, far more time than a busy clinician has to analyze discourse. So what are we left with if we don't have a tool that we can use quickly and easily, and reliably to show the change in our patients as a result of therapy?

Brie: Yeah, I think what we're left with is unfortunately, an inability to reproduce a lot of these findings that are being published. You read a lot of these very well-done studies that are case studies or use several different people, and you just can't reproduce them, because the measures that they used either weren't reliable, to your point, or they didn't provide enough information about those measures in the paper. That's something I often encounter. For me, it's really thinking more from a research point of view of are we doing something that's useful, that can be implemented. I also want to be a little patient and say I think it's going to take a little bit of time for us at the research level to make the shift and make sure it's implementable. We need to keep moving forward, keep pushing it, but I think we're going to have to really give ourselves a little bit of time. I know that's an annoying answer. But I don't want to rush into it either.

Janet: I don't think it's annoying as much as it is realistic. For so long, people have just, as we talked about earlier, measured discourse in whatever way they wanted to or whatever way seemed appropriate at the moment. But now, if the goal is to try to be focused, reliable, valid, and really make a contribution in a meaningful, clinically meaningful way, it will take time to make sure that there's reliability, and that the advice that comes out of those actions is solid for clinicians?

Brie: Absolutely. I really do think, and I am going to say the ball analogy again, I think the ball is rolling. I think it's rolling quickly, because there are some great people working on these things all across the world at the moment. There are tons of groups that are not only improving outcome measures. I also want to point out, there are some groups that are creating treatments that are specific to discourse. The treatment itself is discourse oriented, and that has not been a focus for many, many years. Discourse has always been the outcome, but not necessarily the thing being treated. There is pretty substantial change, I think, coming and I'm really excited about it.

Janet:  You're right, and I'm glad that you mentioned treatments for discourse, because truly discourse has typically been used as pre-post testing, to show that there's been some sort of change, and that's fine. What has to happen and harking back to your interest in the language organization in the brain, what has to happen, so that the discourse itself can improve. Maybe the therapy has to be about the discourse, or some aspect of it, rather than having discourse be the pre-post measurement.

Brie: That's exactly it, and I think you'll find pretty much across the board it is so rare for therapies to, “generalize to discourse”, and I think we're thinking about it wrong. I think we're thinking that because we're training naming, we should see an outcome in word retrieval. But then we're forgetting that we've also chucked in the fact that we're requiring them now to use grammar. We're also requiring them to draw on some memory processes, and maybe some executive function, when we're asking them to do these discourse outcomes. If we train that also during treatment, I think it's going to make a lot more sense that we should be able to measure those things, that outcome

Janet: That’s exactly right. Those are all the things we think about in research design. Not just research design leading to a study, but also clinical research design for what you're going to do with your patient, as you plan their treatment for aphasia.

Brie: Absolutely, and so much credit to clinical decision-making. Again, I have the benefit of a lot of time, and I give a lot of credit to people who make these decisions on very, very little time. I think it's going to be incredible to see how we can finally implement things in the research setting and really making them worthwhile for the clinician as well.

Janet: We just talked about clinical decision-making and for me, I think about mindful clinical decisions. People make clinical decisions all the time. I'd like to see them make those decisions based on evidence, not just the evidence in the literature, but also, thinking back to the evidence-based triangle, the characteristics the patient brings to the table for aphasia? Then adding in what you're learning about discourse, how do we find the best ways to measure the changes, to treat individuals with aphasia, and then measure the changes in discourse in persons with aphasia?

Brie: Yeah, absolutely. I like that. I'm going to use that mindful clinical decision-making now.

Janet: Well, good, go right ahead because that's what it's all about. People make decisions all the time. But if they don't do it mindfully, then you don't know why you've made that decision, or what you might expect. And I think mindful clinical decision-making helps us deliver the most effective and efficient treatment that we possibly can, which, of course is important for all of us and our patients with aphasia and their families. 

Brie, your scientific and academic career has provided many interesting experiences and relationships for you, including recognition as a Tavistock Distinguished Scholar in the United States. Many of our listeners are research scientists, and many more are aphasia clinical specialists seeing patients on a daily basis. As we bring this podcast interview to a close, what advice or lessons learned, or interesting observations from your work in discourse measurement, and the use of technology with persons with aphasia, might you share with our listeners?

Brie: My biggest pearl of wisdom, I'm just going to make this very personal, is hearing and listening to the people around you. I really learned so much not only from my peers and the people who are my actual mentors, those that I would consider true mentors in the sense that I've worked for them or they're slightly more advanced than I am. I've learned equally as much from my peers as from my students and from the clinicians that I work with and lastly, from the people with aphasia, who are included in the study. We're just recently running this big study on inner language, how people with aphasia speak to themselves, why they do it, and how it creates a sense of self. I would never have approached this idea without having feedback from one specific person with aphasia that I worked with back in England. He said, “I have the world's richest inner experience, but it just I can't get it out”. That's been a seed in my head for about 10 years. So I just highly recommend just listening and being really open to what people want and what's important to them. I think that's going to be a key thing for driving forward meaningful research.

Janet: We'll keep that in mind. I think that's very important. A couple of studies have come out recently, and you mentioned this earlier as well, about asking people with aphasia and their families, what's important in research, what's important in the way we designed this particular study? Listening to them, and then incorporating those comments into your research design.

Brie: That's right. It's so motivational as well. I come from a very scientific training, I've studies neuroscience, psychology, and all of these things that have taught me how to think about design, but it really doesn't teach me what is meaningful, right? What do people want, what do they need, and so that listening is really important. 

Janet: The difference between statistically significant and clinically significant or clinically meaningful, which is not always an easy gap to navigate. 

Brie: It's not. That difference is sometimes huge, and sometimes not, but I think it's really valuable to know the difference.

Janet: It's true. 

This is Janet Patterson, and I'm speaking from the VA in Northern California, and along with Aphasia Access, I would like to thank my guest Brie Stark for sharing her knowledge and experience with us as she and her colleagues investigate discourse and virtual assessment and treatment, and the use of technology in aphasia. You can find references, links, and the show notes from today's podcast interview with Brie at Aphasia Access under the Resource tab on the homepage. On behalf of Aphasia Access, we thank you for listening to this episode of the Aphasia Access conversations podcast project. For more information on Aphasia Access, and to access our growing library of materials, please go to www.aphasia.access.org. If you have an idea for a future podcast topic, please email us at info@aphasiaaccess.org Thank you again for your ongoing support of Aphasia Access.

Reference

Dalton SGH, Kim H, Richardson JD, Wright HH (2020). A Compendium of Core Lexicon  

   Checklists. Seminars in Speech and Language, 41(1), 45-60

Ellen Bernstein-Ellis, Program Specialist with the Aphasia Treatment Program at Cal State East Bay speaks with Michelle Gravier, Jennifer Sherwood, and Albert Mendoza to highlight their research exploring the impact of an online exercise program on the fitness, well-being, and cognitive-communication skills of adults with aphasia as part of the Aphasia Treatment Program at CSUEB. This show addresses several gap areas addressed in the Aphasia Access White Paper authored by Nina Simmons Mackie, including: 

• Lack of holistic approach to community reintegration, 
• Insufficient attention to life participation across the continuum for care, and 
• Inadequate communication access

GUESTS:

Michelle Gravier is an assistant professor at Cal State East Bay. In addition to teaching coursework in adult communication disorders and supervising in the Rees Speech, Language, and Hearing Clinic and the Aphasia Treatment Program, Michelle directs the Neurocognitive Research on Rehabilitation of Language Lab (NRRL). Among other research goals, the NRRL seeks to develop and refine interdisciplinary group-based interventions for PWA and explore how these interventions affect language, cognition, mood, and engagement/participation in PWA

Dr. Albert Mendoza and Dr. Jennifer Sherwood are faculty in the Kinesiology Department at Cal State East Bay and both work in the Physical Activity and Health Lab, known as PAHL. The research goals of the PAHL include advancing knowledge pertaining to physical activity and sedentary behavior assessment using data collected from wearable sensors, such as the identification of target behaviors that reduce disease risk and improve quality of life in minority, healthy, and clinical populations. Dr. Albert Mendoza is an assistant professor who teaches coursework in exercise physiology and clinical exercise physiology. Dr. Jennifer Sherwood is an associate professor who teaches coursework in exercise nutrition, exercise prescription and exercise in gerentology. Jennifer also works with the Muscle Power in Older Adults Lab and is past president of the Western Society for Kinesiology and Wellness.

Listener Take-aways:

In today’s episode you will:

• Learn about some of the associated benefits of physical activity for individuals post stroke
• Find out about some of the limitations of exercise intervention research in terms of including individuals with aphasia
• Hear a description of both physical activity and cognitive-communication outcomes measures for the LLAMA study
• Reflect on how SLPs can offer training and support to Kinesiologists in becoming skilled communication partners.

Transcript edited for conciseness:

Ellen Bernstein-Ellis/Interviewer

I am welcoming you all to this episode. Thank you for being here. Michelle. Albert, Jennifer, thank you.

Albert Mendoza  04:04

Thank you for having us.

Jennifer Sherwood  04:04

Thank you for having us.

Interviewer  04:05

Absolutely. I'm going to just kick off with a question that I'm going to pass to you, Michelle. Would you care to share an aphasia access favorite resource or moment to start us off today?

Michelle Gravier  04:24

I would love to, thank you, Ellen. I appreciate so much what Aphasia Access provides for all of us. But I just would like to highlight the Brag and Steal sessions. So we actually had the opportunity as a group to present at the Brag and Steal a while ago to present this project that we'll be talking about today. And as you'll hear, it's one of our goals to help people start an exercise group in their aphasia program. It was really amazing to be able to share some of the lessons that we've learned along the way. We were able to implement some of the other ideas that people shared in the Brag and Steal in our own Aphasia Treatment Program.

Interviewer  05:07

Absolutely great ideas and great information. And most of all, just a great community culture of sharing with each other and supporting folks who are really interested in Life Participation approaches. 

Before we dive in further, I like to share why I find this topic of exercise so meaningful. My first couple summers of college, I worked as an adaptive PE aide at De Anza Community College in Silicon Valley. And it was just a great opportunity to learn about making physical activity more accessible to a wide range of community members with disabilities. Now, one class member was an elderly woman who had had a stroke. When she came in with her husband, we would help her from her wheelchair to the mats for exercise, but she would often sob through her session. This was just long before I understood the concept of lability or aphasia, and we just did not have any training on how to be a skilled conversation partner. And without any idea of how to support her communication, her ability to participate in the class was negatively impacted. I just remember feeling that the loss of the ability to communicate was just deeply devastating. 

Well, fortunately, I found the speech pathology major at UC Santa Barbara. Now fast forward from the late 1970s when I was an undergraduate to 2014 when I was sitting in the ASHA session developed by Anne Oehring, Leora Cherney and a Kinesiology colleague from what was then the Rehab Institute of Chicago, now the Shirley Ryan Ability Lab. They presented their collaborative group treatment model that offered discussions about health-related topics followed by a period of active exercise. Their interprofessional aphasia friendly approach to exercise participation made me think back on that adaptive PE experience. And in the last few years, Aura Kagan has provided multiple reminders that we should be considering the impact of exercise on wellness and recovery in our aphasia communities. So, all of that brings us to today's podcast and getting to explore and share this exercise program. Albert, why don't you get us started by explaining why we have a “llama” in the title of this episode and how the project got started?

Albert Mendoza  07:33

I don't mind at all and thank you for asking. So, it found its way in the title by the way, what is the title again? It's “A llama, a resistance band, and Neil Diamond walk into a bar.”

Interviewer  07:43

(Laughter) That's one of our choices.

Albert Mendoza  07:45

Okay, let's roll with that. A llama entered because that is the acronym for our program. The LLAMA stands for Life-Long Activity through Movement for Aphasia--LLAMA. That's why it's in the title. Also, there's a resistance band, which is one of the pieces of equipment that we provided to our participants that we actually integrate into the exercises. And Neil Diamond, one of the favorites. Whenever Jennifer plays Neil Diamond while we're doing the exercises, you just see the participants’ faces light up as well as ours. We both dig on Neil Diamond as well. So it works out. That's a story. I'm sticking to it, Ellen.

Interviewer  08:33

Well, that explains why we have a llama. And could you tell us a little bit about how the project and collaboration actually got started? You were there.

Albert Mendoza  08:44

There’s a group on campus, CSR, Center for Student Research. And briefly, it's a program that connects undergraduate and graduate students with faculty who do research and gives them an opportunity to be exposed to research and develop stronger connection with faculty and some skills for their next steps. I was at a (CSR) mixer and we all had name tags on and they had asked some of the students who were there to go around and engage in conversation at different tables. I was standing at a table with two other people. A woman came over and I recognized her right away because her hair was bright blue or pink, I think. I said, “Wait I've seen you before” and I told her that I teach a class in the music building which happened to be right across the hall from the aphasia, I always called it the headquarters but I know there's a--  for the ATP program. And I said, “What was it that you do there?” Because when I would finish lecturing, there'd be a group of people who would come in and they moved everything around. They put up music stands and then there were a lot of people with assisted walking devices in the hallway.

Interviewer  09:58

It sounds like you were leading right into our Aphasia Tones rehearsal.

Albert Mendoza  10:01

That's exactly what it was. So she would talk to me about Aphasia Tones. I thought it was awesome. I just stuck around a few times to watch the Aphasia Tones from the door. But before that, after she told me what they did and told me about the Aphasia Treatment Program, I asked her if there was an exercise component and if she thought that people would be interested in something like that, and she said, “No.” And we have another program in our department that was started by Jennifer, who's here with us today. It's called Get Fit, Stay Fit. And the person who was in charge of Get Fit, Stay Fit, at the time, his name's Andrew Denys, a grad student in our department, happened to walk into the room. I said, “I want to connect you with Andrew. He's the person to talk to, and then we can see about collaborating, getting some students that can come over to work with your students.” And so that's really what started it off. 

And I'll tell you when I was really sold, Ellen, was when at the end of the semester, there's a concert that Aphasia Tones puts on, and I went to that concert, and it just blew me away. I was standing in the back and watching everybody sing. And there's a song that was actually written by somebody, I forgot the name of the song, but---

Interviewer  11:17

“I’m Here”, yeah, it was a collaborative songwriting effort.

Albert Mendoza  11:22

I thought, this is why all of us here are doing things like this, to see the impact that you could have, or that you can offer a way in which you can positively impact people's lives. I was like, we have to figure this out, I mean, there's some way that we can be instrumental here. So that's what started off the relationship between Jennifer, myself and your whole crew.

Interviewer  11:51

We also can give a shout out to that graduate student whose name is also Jennifer, Jennifer Cleary, who helped to do the coordination and get it off the ground for the program. And yes, you asked if there was interest. We didn't have an exercise component, but I had been asked multiple times by my members, “Could we do something active?” 

Albert Mendoza  12:14

I guess my question is what took you so long to get to the Kin department, and we were like, 40 meters from your building? (Laughter)

Interviewer  12:21

Well, 40 meters is a long, long distance for people who have mobility issues. So that was part of the problem. But I am so glad that that this collaboration started. It is awesome. Albert, thank you for sharing the origins because I love that it was a bottoms up kind of start where ATP members were asking for it. We just somehow had to get the stakeholders together to communicate and share, and you guys just embraced it and made it happen. 

So now I'm going to back up. Jennifer, maybe I can hand this next question off to you. 

We started as a face-to-face exercise class. But this is a podcast about an online program, a research project, but we originally started with eight people in a room. People could come once a week, we only had space for eight people on one day, eight people another day. Today's focus will be on this online project. Jennifer, what does research tell us about physical activity levels post stroke, what does that look like?

Jennifer Sherwood  13:23

Most adults post-stroke lead a sedentary lifestyle, and they spend 81% of their waking time in sedentary behaviors. They experience reduced cardiovascular fitness, mobility, and they have limited muscle control. And they also have an increased risk of falling. For adults with aphasia, some of our work shows that they take fewer steps and are more sedentary compared to the similarly aged stroke survivors without aphasia

.

Interviewer  13:55

I've read that increased sedentary behavior, which I'm really feeling during COVID with all of this time online, increases health risk. Increased secondary behavior is not necessarily a good thing at all. 

Michelle, you and I had the opportunity to attend the C Star lecture presented by Dr. Jean Neal Strunjas on “Aging Gracefully, with Exercise and Social Engagement” back in February of this year. And we were impressed. She shared her bingo-cize program developed to engage seniors in the skilled nursing setting, to hopefully get them more active and involved. We'll put the C-star link to that lecture in the show notes. She also provided a review of the evidence for the positive impact of exercise in seniors with and without dementia on cognition and quality of life. It was really quite remarkable and motivating to see that data. I wanted to go out for a walk as soon as that webinar was over, because the data was just so impressive. 

Jennifer, let me go back to you for a moment. What is the research suggesting about the benefits of exercise for individuals post stroke?

Jennifer Sherwood  15:06

In post stroke adults, regular physical activity is associated with reduced physical disability. It may be associated with reduced falls. It's linked to better attention and processing speed, but evidence is equivocal on the effects on working memory. Evidence also suggests that aerobic exercise training in post-stroke adults is associated with better cardiovascular fitness, cognitive abilities, walking speed, endurance, balance and quality of life. And strength training is associated with better physical function, mobility, psychosocial aspects and quality of life. While flexibility and stretching exercises are associated with increased joint range of motion, reduced muscle spasticity, and increased motor function.

Interviewer  15:55

It's always really an impressive list. We know that exercise is good for us. I appreciate you just kind of laying that out.

Michelle, you and I also got to attend a session at the 2021 Clinical Aphasiology Conference featuring a preview of the scoping review, led by Chaleece Sandberg and her colleagues in the ANCDs writing group, examining the research on the impact of aerobic exercise on cognitive-communication status in individuals with aphasia. This endeavor was motivated, at least in part, by the Harnish et al. 2018 article, which considered aerobic exercise as an adjuvant therapy for aphasia. We’re going to put these citations in our show notes but be on the lookout for a future publication of this scoping review. One takeaway was that we need more research on aphasia and exercise. And they also mentioned some common factors in studies that seem to show positive impact. Michelle, do you want to highlight anything?

Michelle Gravier  16:57

Thank you, Ellen. So, I think as you mentioned, the main takeaway is that we do need more research on including people with aphasia. One of the main takeaways that they provided, in addition to mentioning that we do need more research, is that there’s not a lot of information in the articles that are out there about stroke and exercise that specify how many people with aphasia were actually included in these studies.

Interviewer  17:23

Yeah, or not included.

Michelle Gravier  17:24

Yeah, of course, or not included.  But the some of the factors that they identified that might be associated more with positive outcomes included higher frequency programs, longer duration programs, greater exercise intensity, and also the inclusion of different kinds of exercise. So that just goes back to what Jennifer was saying, supporting the role of not just aerobic exercise, but also strength training, for example, in imparting these benefits.

Interviewer  17:57

So you actually just alluded to this and I'm going to ask Jennifer about the research in terms of exercise and stroke. How does it typically include or designate if there are individuals with aphasia as participants, what have you found?

Jennifer Sherwood  18:12

So there's a couple of limitations—especially the data with post stroke adults is limited. It's limited because studies don't recruit nonambulatory stroke survivors. And exercise interventions that involve stroke survivors are often limited by what health insurance will pay. And typically, this limits studies to the first three to six months post stroke, leaving chronic stroke survivors and their families to navigate their lives with new and evolving physical challenges.

In addition, it's also difficult to recruit chronic stroke survivors because stroke isolates people, and so they're less likely to engage in exercise and be in places where they might be recruited to participate in an exercise study. Adults with aphasia who are 25 to 40%. of post-stroke adults are typically not included in studies, especially exercise studies. And the reason being that the studies don't recruit adults with communication difficulties. Adults with aphasia have difficulty following directions and have difficulty reporting their experiences. Therefore, if the study requires participants to report language related outcomes, researchers exclude adults with aphasia, and adults with aphasia also have difficulty understanding informed consent documents. And these documents must be thoughtfully prepared to be understandable and enable adults with aphasia to consent. And another barrier, the final barrier, is that research related tools to work with adults with aphasia are limited. There's no toolkit, and there are few standardized study assessments available for researchers interested in the experiences of adults with aphasia.

Interviewer  19:53

Right, you know, in terms of those limitations and barriers that have caused people to exclude individuals with aphasia as participants, I just want to acknowledge some of the work by Pearl and Cruz in their 2017 article, Daleman’s 2009 article, and even Luck and Rose’s 2007 article. It all talks about the methods and ways to make sure that we can be more inclusive. And the reasons to include these individuals in our research are just so vital and important. I hope the listeners will take a look at those articles in the show note citations, because I think that's a really good place to start. 

So you mentioned some of the barriers, Jennifer to participating in exercise post stroke, do you see there are additional barriers for individuals with aphasia, just being in a post stroke exercise class,

Jennifer Sherwood  20:47

In addition to potential physical ability, or the variable amount of physical ability, there's often, and this is for post stroke as well, that that physicians neglect to recommend exercise, despite the potential benefits. Engaging post-stroke adults in exercise is more difficult because there's not knowledgeable people with the skills to adapt the exercise for their physical and communication abilities. And the programs need to be flexible to accommodate and adapt to frequent health related interruptions and changing physical abilities. And so there's a paucity of these programs in the community.

Interviewer  21:30

That was my next question. What do we know about the availability of adapted community-based exercise classes? Are they widely available? It sounds like not so much.

Jennifer Sherwood  21:41

Now, if you think about most community centers—so the hospital rehabilitation is usually limited by it by insurance. There's maybe like 10 visits or something and that's happening in the first six months post stroke. Then people are left to go to their community centers and community centers are busy, people are impatient. People don't have the training to work with adults with physical disabilities and different communication abilities. I can imagine, and research suggests, that people with aphasia are not going to those locations to exercise.

Interviewer  22:23

I am excited to start talking about the current research focus and status of the LLAMA project at Cal State East Bay. I'd like to share this collaboration because it is a coming together of the speech pathology program and the kinesiology program to create this project. Albert, do you want to talk about the purpose and where we're at with this project?

Albert Mendoza  22:49

Sure. Thank you for asking. The purpose of LLAMA is to assess the feasibility retention and compliance to a physical activity intervention delivered online and individualized in real time to post-stroke adults with chronic aphasia. We have a secondary aim to investigate the preliminary effects of the intervention on sedentary behaviors, physical activity, and function.

Interviewer  23:16

All right, so a lot of different goals. How about describing your participants?

Albert Mendoza  23:22

I mean, just describing the aims of this, it just sounds like a lifelong study.

Interviewer  23:28

Yeah, that's right. It's big.

Albert Mendoza  23:32

So our participants, this is great, because we have a wide range of ages, a range of time post-stroke with our average time from post-stroke being about 10 years. There's a range of aphasia severity from mild to severe. Also, different types of a aphasia, we have a range of six different types of aphasia. And paralysis or paresis, just under 80% of our population have upper and lower right paresis, and many of them have assisted walking devices or wheelchairs. And several of them have been with us for three continuous semesters--they've engaged with the program. So that's pretty exciting. 

Interviewer  24:25

It's really exciting because our members vote with their feet. They don't like something, then they don't come back. They take a different group, different class, so…

Albert Mendoza  24:32

They don't like something, they let you know. And then they don’t come

Interviewer  24:37

True. They are very empowered to tell us what they like and don't like. Absolutely. 

Let's talk about outcome measures. Because I think that's always a tricky part of any study. And this is where interprofessional collaboration, I think really shines. So let's describe our main measures as they cross several domains and why don't we start with the physical activity ones

Albert Mendoza  24:59 

For physical activity, like what Jennifer was discussing earlier, we're taking the approach of examining both physical activity behaviors as well as sedentary behavior. So sedentary behaviors, in general are defined as behaviors that require energy expenditure just above resting, just barely above resting, in a seated or reclined position. And then physical activities are above resting, those activities that they're engaging in. For physical activities, we're examining steps as an outcome, stepping time, stepping bouts, in times of like, less than a minute, between a minute and five minutes. Standing time-- 

Interviewer  25:39

Wait, wait tell us again with a stepping bout is, we’re speech pathologists!

Albert Mendoza  25:44

Anytime I say bout it means that you're going from one behavior to another behavior. So it's like a transition. So right now, some of us are sitting, some of us are standing--a stepping bout would mean you get up, you go to the kitchen to grab yourself a glass of Chardonnay or Pinot Grigio. And then you walk back, right, that's a stepping bout. So you went from a sitting behavior or sitting posture, to a walking behavior, and then back to a sitting behavior. So that would be a bout within there. And then when it comes to the sedentary behaviors, we're examining sitting time, so how many minutes a day they're sitting, as well as sitting bouts. So again, that would be a sitting behavior, and then it would transition to a different behavior than back to sitting. We're looking at sitting bouts greater than 30 minutes throughout the day.

Interviewer  26:37

I have just greatly, greatly been impressed and amazed by what it's taken to get those physical measures. And we'll talk about that a little bit more because that's involved some wearable devices. And I'm excited for you to explain that to the audience. today.

Albert Mendoza  26:53

We will and you know, I'm sorry, I just wanted to add that these behaviors, sedentary behaviors and physical activity, they're not mutually exclusive. So a person who has an office job or who's a grad student feverishly writing their dissertation but who runs for 45 minutes later in the day, they have both behaviors. That's the reason why we're examining both behaviors. So I'm sorry, go ahead. 

Interviewer  27:23

No, thank you. Thank you. I'm going to ask Michelle to describe some of the cognitive-communication and psychosocial measures that have been engaged for this for this study. 

Michelle Gravier  27:35

Thank you, Ellen. We are interested in looking at different outcome measures. For our language outcome measure, we are using the Quick Aphasia Battery. And we selected that measure to see if participating in the group had any outcome or any effect on individual language performance. For our cognitive outcome measure, we selected the Test of Nonverbal Intelligence. We selected that measure because we were interested to see if it affected nonverbal intelligence, so controlling for individual's language ability. And we also were interested in looking at self-perceived barriers to physical activity. Jennifer mentioned some of the barriers that people had to participating in exercise and we wanted to see if participating in the group affected or reduced any of those barriers. We used the Barriers to Physical Activity After Stroke, known as the BOMPAS, and it includes 15 questions across four domains, including locomotor problems, fatigue, and mood, motivation, and information and comorbidities. And finally, we wanted to look at quality of life. And so for that, we use the Burden of Stroke Scale. And this scale asks questions in different domains related to how difficult individuals feel that these different activities are, including mobility, self-care, swallowing, communications, social relationships, energy and sleep positive and negative mood. And it also asks questions about the impact of those difficulties on individuals lives.

Interviewer  29:23

Thank you. I know that our students have really enjoyed learning to give those measures and have an opportunity to learn about the online administration of those measures, because they are all online. Right? All of the assessments?

Michelle Gravier  29:38

That's correct. Yeah. So, as you mentioned, even though the group started in person, the research study actually started once we moved online due to COVID. That’s why we have interest in really looking to see how we were able to provide an online program.

Interviewer  30:01

Hats off to you because the study was supposed to be in person and you guys just pivoted and made it happen online, which has been impressive. 

I think some of the next few questions are going to focus around adaptability and accessibility. I'm going to go back to the physical measures for a moment. Albert, there was a lot of effort that went into adapting some of the instructions for the participants for the wearable, health monitors like the Fitbit, and the activPAL. Could you explain some of the things that were done in order to make these things, clear instructions, clear and doable for our participants? 

Albert Mendoza  30:43

This had interprofessional collaboration written all over it. There's absolutely no way we would have been successful at getting these devices to participants and wearing them or anything if we didn't have the relationship that we do, Kinesiology with the SLP group. 

So briefly, these devices that they wore, one was a research grade device, it's a thigh worn monitor; the other is a is a consumer grade monitor, it's a Fitbit that you wear on the wrist. And for both of those, actually Sarah Millar who's a former SLP grad student of yours, made these videos of how to wear the devices, how to charge the devices, proper care, and then we made those available to the members themselves. 

We also demonstrated ourselves, so myself, Jennifer, Michelle, after we initialized the devices together, we waterproofed the thigh monitor and tegaderm is used, and we draw a little picture on it so we know which way is up. We take these baggies out to the person's houses. We hand deliver and we demonstrate as well, like this is how you want to wear it, you leave the thigh monitor on as long as you can, only take it off at times when it be submerged in water. 

The wrist device, we had only requested that they wear the Fitbit during the exercise sessions, so twice weekly, so that we can get a measure of heart rate. But it turns out, most wore the wrist monitor all the time, to bed and everything. The actiPAL, they wore pretty much 1,440 minutes a day, so that's 24 hours a day that they've had the device. So that's quite something, I mean compliance to wearing those devices. We realize that it is a burden. So we're really thankful that all the members just took to it. 

And it was because of the way that we were able to communicate with them with the help of the Speech, Language and Hearing Sciences department to help guide us with how to add more pictures, how to slow our speech down, how to be more descriptive. I was just mentioning that Jennifer and I have made this video, recently. We have new Fitbits. The members need to download the app and sync the device. Jennifer, I noticed just the way that she spoke in the video, she was very clear with her hand motions and very purposeful with the movements-- nothing too fast. It’s really at a cadence that, to me, it reminds me of our sessions--the way that we interact with the members. 

I think the fact that it's us doing it, myself, Michelle and Jennifer, that also resonates with the members. We're not strangers to them. I hope their impression is that we do genuinely care about them. And that we're offering the best possible mechanism of physical activity that they can engage in, in their best interests and as safely as possible. So those are some of the things that we did.

Oh, also, Jennifer started drafting an email that we would send ahead of time. I forgot whose recommendation this was, but I think it came from, I was gonna say the other side, but that's speech language, you know, your whole posse, but there's an email that goes out. Now a student sends an email out to the group the night before. It has nice big font, and (says) we're meeting tomorrow, this is the Zoom link, it's the same zoom link all the time, the same password, but, we send it out. And then also there's some pictures of some of the equipment that we use,

Interviewer  34:16

Like bring your resistance band and there’s a picture of a resistance band. I was so impressed.

Albert Mendoza  34:20

Yeah, and the ball. Also, Jennifer puts a link to the song that we're going to do. Those are all, and probably a few more things that I’m missing, are how we were able to get devices out.

Interviewer  34:40

Let’s just jump into the class. Jennifer, would you please describe, I don't know if the word typical is right, but typical class. I think it’s anything but typical. 

And Albert, you've just said you hope that the members know that you are genuinely involved and engaged and supportive. I think that message is loud and clear. If there was a measure of that, it would be off the scale, because you guys are awesome with the members.

Albert Mendoza  35:05

So thanks, we need to capture that measure. 

Interviewer  35:07

Okay, we need to work on that. Absolutely. So Jennifer, what does a typical class look like?

Jennifer Sherwood  35:15

So, in a typical class, everyone logs into zoom. Then we greet them as they come in, we check in with them, we get beginning heart rates, if needed. We then open up a video and we share the video. It’s an exercise team member and she's doing the movements. And so it's a split screen. There’s one side where she's using all of her limbs. And then the other side of the screen is where she's helping her “getting stronger arm”. So there's always two adaptations and they're noted with a blue circle and a yellow star. We start the videos so that people can clearly see what she's doing. And then we play music, Neil Diamond, Rod Stewart, the Commodores. Then we, we are all on Zoom together, can all see each other. And we note movements. We remind people that these movements are like activities of daily living, like maybe picking up their remote. We give them continuous feedback on their form and on their engagement. We acknowledge them, we challenge them, we remind them to work within a pain free range of motion, to stabilize themselves when they're standing from a chair, to continuously breathe. We run through a series of strength training exercises, their activities of daily living, but we use resistance bands to add extra resistance. We sometimes do them slower, so they're more strength building; sometimes we do them faster. And then at the end, there's a dance, and that is a little more aerobic. We watch a video of Sherry Zack Morris from Yoga Vista, and she has great videos. Then we end with taking heart rates, if needed. Then we say goodbye, keep up the good work, and remind them we'll see them in a couple of days.

Interviewer  37:25

It is such an incredibly positive and motivating supportive atmosphere. I hadn't watched for a for a while yet this semester and I got to watch this week. I started to try to do some type of count. I started to count moments or instances of positive feedback and banter, just trying to capture somehow, describe somehow, just how engaging this class is. You and Albert really are connecting frequently with the members. I think you actually try to track to make sure that everybody has had at least one, but usually it's multiple individual callouts in the session, which I think is really nice. People feel very listened to and present to the activity. 

You started to describe some of these, but is there anything else you want to add to how we've made the classes more communicatively accessible? Albert noted the aphasia friendly emails, did we cover everything?

Jennifer Sherwood  38:43

During the classes, we have the video and the movements are very clear. The movement is named, so it's textually represented below the video. And then we also have a picture of the name of the exercise below the video. We're able to adapt the exercises and the cues to the pace that's appropriate for the individuals in the class at in real time. And so we can make sure that we're using easily understandable words, short feedback. We're speaking more slowly and we're articulating clearly.

Interviewer  39:30

Thank you. Well, I really appreciate how much effort and thought has gone into these adaptations. Michelle, can you share your observations about how individuals with more severe aphasia do in these classes. What have you noticed?

Michelle Gravier  39:48

Well, for all the reasons that Albert and Jennifer just articulated, it's really accessible to members with all ability levels, so even our members with more severe aphasia are able to really participate, and they see everybody else doing the exercises. Even those who don't feel comfortable or confident enough, maybe, to participate in some of the communication-based groups that we offer an ATP, really thrive in the exercise group. And you can tell, just as he mentioned, Albert and Jennifer are always giving feedback and support to numbers. Some of the members who, even at the beginning of the program maybe seemed a little bit more reluctant or not as engaged, it's really been amazing over the semesters to see them open up and really grow so much. So now, some of the members with more severe aphasia are actually some who are probably among the more engaged members.

Interviewer  41:01

We've talked a couple times about how we started out as in-person, and now we're online. Some of our programs are completely online, some are offering both in-person and online groups. I'd like to ask you to reflect on some of the pros and cons of this online versus in-person format. Online has been particularly wonderful because we've been able to include our doggie mascots, which are yours, Jennifer. They are the most wonderful dogs who seem to love to come keep you company while you're exercising, especially if you’re making a video. So that's one positive, we get to have doggy mascots. Michelle, your cats show up now and then. Let's talk about the online aspects. Jennifer, are there things that you have observed or concluded?

Jennifer Sherwood  42:02

As you mentioned, at the beginning, when we were face to face, we were limited to eight participants. Now we can take as many participants as want to log-in on Zoom. The other thing is that people are on Zoom so they don't have to go to a place. They can exercise within their own home. They can exercise in a place where they're comfortable, their caregivers are there. They don't have travel time, it's easy for them to exercise. I was looking back at when we were face to face, and one of the things we were trying to do was develop pictures of exercises. I thought it was really interesting that now we have these beautiful videos illustrating the movements and that the members seem to really engage with.

Interviewer  42:59

That has been kind of a silver lining, the ability to use the screen and show videos which is harder to do in the class setting that we had. 

We've mentioned several times this whole concept of making this aphasia friendly and more accessible. But I'd like to ask Jennifer and Albert as Kinesiology faculty, what has been helpful in learning to communicate with individuals with aphasia? 

Jennifer Sherwood  43:33

As kinesiologists we enjoy physical activity. We know all of the benefits of physical activity. And there's no way that we could have communicated with this population for whom there's so many benefits of physical activity; there's no way that we could have communicated with this population without working with our speech and language therapists. 

Albert Mendoza  44:05

I'm glad you brought that up. Because I was thinking about that the other day, that we have all this knowledge, all this evidence and guidelines etc. But it is not meaningful, especially to our group with aphasia, if there's not a way for us to translate that to that group, to that community, to those family members, those caregivers. So it's absolutely true. That is one thing that it allows us to do, right?

Interviewer  44:32

I think the beauty is, we appreciate your acknowledgement of learning the communication skills, communication partner skills, but there is no way I would even try to think about leading exercise class, like I see you two do and how you shape and model behavior. I am so grateful for your expertise and for you bringing it to us and to our members. 

Albert Mendoza  44:56

Thanks and I think that's one of the cons. Jennifer was talking about the benefits of being online, there are many, but one of the cons is that we're not able to be with them, kind of anatomically next to them where we could help with--when we're online Jennifer and I can say, “You want your elbow to be fixed”, “You want to extend your arm here”, “Your shoulders back, chest back”. But when you're with them, you can, you can give more specific corrections. It's a little difficult because we don't always get a whole body view of the members since many of them are in a seated position because they need to be. But that's one of the cons of just not being able to be there with them. But, just short of that, we're able to watch them the best we can. 

We give them not just encouragement, but also to make it a little more challenging--actually, Jennifer just recently started counting down like the last five reps of whatever we're doing, which has been awesome because she's always very purposeful. We talk a lot about moving within your pain-free range of motion, but also, slow and steady, slow and easy, no jerky motions. Jennifer will slow it down. We know that in our fields when you slow these movements down, they become more intense. But they’re very purposeful movements. They don't have to be these large movements, but they have a large impact. I really appreciate the fact she's doing that because we get everybody counting together. That's something that I really do enjoy about the online, that we were able to be more specific and purposeful with some of the movements that we're asking them to engage in, that we engage in with them as well as Michelle.

Interviewer  46:46

There's a lot to learn. There are pros and cons for both formats. I'm going to go back to this accessibility issue and thinking about the students that you've been involving, in your labs and in this collaboration. How do the Kinesiology students learn about communication accessibility and being skilled communication partners? And do you see that this experience is helpful to their education and maybe translates into future job skills? What's been the approach to help train these students?

Jennifer Sherwood  47:19

Well, the first thing that had to happen, it was a key piece, is that they speech, language and hearing professionals, faculty and students, trained faculty and students from the Kinesiology department to use supportive communication and adapt the exercise delivery. We're modeling this as faculty, and as students, we're modeling this collaboration, this respect for another discipline, and willingness to learn from other professionals, and being able to practice within our scope of practice. We are not language professionals. And I appreciate that you acknowledged that you guys are not exercise professionals. I think it's really important for students to see how integrated we can work together. I feel like it's been incredibly educational and it's just been a really good environment. We teach students to collaborate. We're challenging them to extend their discipline, specific knowledge and skills, to plan and deliver and assess this physical activity interventions for adults with aphasia.

Interviewer  48:43

Albert, you've mentioned to me a couple of times that concept of translatable skills. Do you want to elaborate on that? I think about the trainers at my father-in-law's senior residence who come to the gym, and some of them are graduates of your kinesiology department, and they're really popular at this gym, of course--they are trained by you guys. I'm just thinking about the students who will come out now and have all this knowledge about aphasia and communication that will hopefully be helpful in these environments that they're going into.

Albert Mendoza  49:20

Building upon what Jennifer was saying, the ability to take what they're learning in the classroom and apply that in some meaningful way to a group of people, community, like this is important. Those are life skills, being able to communicate, but also being humble along the lines of what Jennifer was saying-- that knowing what's not in your wheelhouse and what is and just asking for help and asking for input and thoughts. 

We ask this of our students, and we should be doing it ourselves. And if we're not, shame on us. We should model that behavior. It's been such a great experience. I've heard from students who've worked in the program that they see the relationship that we have, myself, Jennifer, and Michelle and the other students, and you as well, Ellen. And that makes a difference. It makes all the difference because it's more of the action versus just telling them what you should be doing. But they just see, we do it, and they get it, and if those that don't get it, it's ruthlessly exposed. It's something that they're able to take to their next step, right? And we talk about that often, like, setting themselves up with this experience and developing the skills so that they have more possibilities and options when they're when they're done. 

And we have a student who has worked with us, and this person is still with us, they're going to be applying to PT schools. I was reading through her materials. She talks about the group of people she'd like to work with. I know that what she's applying with the aphasia group are the exact kind of skills that she'll need to be successful with this other group of people. She's talking about water therapies and things like this, but the way that she speaks and interacts with a patient, it reminds me how Jennifer interacts with them. It's like very aphasia-friendly.

You get it, I remember one day, we had a conversation, I said, “Oh, I'm gonna run into this person's house. I'm gonna have a quick talk with him, I’m gonna go”. And you're like, “There are no quick conversations with anyone with aphasia.” There's a lot to that statement. So that to me is another skill. And in this age, when we have less and less reason to communicate with people, especially face to face or eye to eye, it's kind of a lost art. So I'm glad that our students have an opportunity to grow in that way.

Interviewer  52:08

Yes, me too. It's been really rewarding to watch them and to get to be part of watching our SLP students lead the training for the Kinesiology students and faculty. We've talked about accessibility, I feel really good about sharing that, but I want to give you an opportunity to share any initial results. Michelle, are you going to start that part?

Michelle Gravier  52:33

When I was introducing the outcome measures, like I mentioned, we were using the Quick Aphasia Battery in the past tense. So I guess that gave a little bit away. But what we're finding is that the we didn't see initially any effect of participating in the program on language ability, as measured by the Quick Aphasia Battery. And so we just wanted to see if maybe that was just because we weren't using a measure that was quite sensitive enough. So we're actually adjusting some of our outcome measures that we're using this semester. For the cognitive outcome measure, The Test of Nonverbal Intelligence, our findings are similar in the sense that we didn't see any effect of participating on that measure. Similarly, we were thinking that maybe the outcome measure wasn't measuring quite the things that we might expect would be impacted by participating in an exercise group. The Test of Nonverbal Intelligence really focuses more on abstract reasoning and problem solving. Maybe there are some other domains of cognition, like attention, for example, that would be more likely to show some effects of exercise. But what we did find was that our members reported at the end of the semester that they on the BOSS, our quality of life measure, that they had fewer difficulties across all of those domains, but more specifically, that there were significant differences on the positive mood outcome. So suggesting, hopefully, that participating in the exercise group actually resulted in people having positive psychosocial outcomes.

Interviewer  54:23

It's really important to recovery. We know how frequently depression is an issue for people with aphasia, at such a higher rate than stroke survivors without aphasia, so I think any improvement in positive mood is really significant. Having access to classes and treatments that allow them to participate in things that might have an impact on mood is really vital. Albert, do you want to summarize some of the physical activity outcomes.

Albert Mendoza  54:57

Sure, so for physical activity outcomes, what we found were that steps and standing time increased in our group, and it happened to decrease in the control group. Our group took about on average about 1300 steps a day, which, in general 2000 steps a day is about a mile. So it gives you an idea of how much our participants step. But what was most promising was standing time, and they increased their standing time from pre to post over an hour, like 62 minutes daily, compared to the controls that actually decreased in standing time, almost 90 minutes from pre to post. So that was that was promising. And with sedentary time that both groups decreased in sitting time, not by much, but there was a little bit of a decrease. So that's, that's promising, it wasn't an increase. 

Interviewer  55:45

And you're still collecting data. This is still a project and process, so there'll be more to come. 

I'm going to ask if you have any recommendations for listeners, who might want to start an exercise class or do some research?

Albert Mendoza  56:04

I think I've mentioned this once before, but make friends with the Speech Language Pathology Department, if you're in the Department of Kinesiology, that'd be my first thing. The other thing is, you need to be invested. If you're not invested in the program, like if you're not really there for them, they're gonna sniff it out and you're gonna be in trouble. I think it's gonna make your life a lot more difficult. I'm sure you know as the educators, clinicians and researchers you are, but it's just been the vibe that I've gotten from being involved with a group. So that would be first recommendation, to really talk, go out and walk across the campus, go talk to another group of people, introduce yourself, buy them a cup of coffee, and have a conversation. I mean, that's really how it starts. It’s building a relationship like any other. We need each other. There's no one can do it on their own.

Interviewer  56:59

I would really love to see more classes, opportunities, and more collaborations develop. 

Albert Mendoza  57:07

That's in the pike, that's on deck, Ellen.

Interviewer  57:15

That would be exciting. 

So I'm going to direct one last question to each of you. What message do you want to leave the listeners with in terms of the value of interprofessional practice on this project, and/or anything else that you want to have the opportunity to say that you haven't had a chance to say. This is your moment. So, who's going to go first? 

Jennifer Sherwood  57:42

I'll start. So, I just think there's no way that we could have started or would still be doing this program and expanding this program without the help of the speech language professionals. There’s just no way and the things that that we've learned and that our students have learned, and the skills that we've gained, and the friends that we've made, are just, I mean, I feel really blessed and fortunate.

Interviewer  58:17

So do we. Thank you. Thank you, Jennifer.

Michelle Gravier  58:19

I'll go next. And just to add to that, I think everything that everybody has mentioned has been sort of alluding to this, but it's just really been an iterative process as well. I think that in addition to learning how to work as an interdisciplinary team and learning from each other, so they like more about exercise recommendations, and I think just learning from the members about what their needs are and how to adapt the program to make it work.

Albert Mendoza  58:57

I'm glad you said that Michelle, because I was just thinking that we've talked before about all the interviews and all the processes that your group goes through to collect data on all the members. I mean, very informative, very thorough. We've had conversations and Jennifer too, about like, maybe we could ask this question to find out, because we really wanted to know what's their take on what we're doing? How could it be better for them? So constantly reevaluating, but you check in with the members to find out what their needs are so that we can do our best to meet them from our direction, to meet them there. 

I'm glad that Michelle had mentioned that because that's something that I thought about also. I had a cup of tea the other day and I like reading the little, I don't know what you call those in the back of the-

Interviewer  59:49

The piece of paper? Yeah, yeah, I don't know what that is called either.

Albert Mendoza  59:53

I read it to my students because I just got a kick out of it and it was a “Aspire to inspire before you expire.” I would say thinking about this project and what we're doing, like, I really hope that what we're doing is really inspiring to others to take action--to get involved somehow in their community or their families, to give, to share the knowledge, to share your experience, to give others an opportunity to improve their quality of life for the short time that we all have here. So, this is just one way that we're able to give back and say thank you to the members in the aphasia group, and hopefully, you know, this is just the start of something great. Isn't that a Neil Diamond song? I'm sure he has a lyric in this.

Interviewer  1:00:52

It's that time to start…. (sings)

Albert Mendoza  1:00:53

My aphasia! (sings)

Interviewer  1:00:57

Yes. Yeah.

Albert Mendoza  1:00:58

Ultimately, that would be my message, my closing thoughts about the whole thing because when we go drop devices off, it's kind of a double edged sword, because we do have to travel around and it's a little bit burdensome on the members, but having conversations with them with their---I had one person's wife tell me at the door-- they all want to say hello, right? So I just wait there, and I'm sure Jennifer and Michelle do the same. And while this person comes to the door, his wife said, “Hey, you know what? He actually walked upstairs to get into the bed, a couple days ago” or something like that. 

To any of us, to me especially, that's not something that we really think about, right? Unless you've had the luxury of staying in a hospital, like myself and others, where you really forget that those are luxuries. Those aren't things that are just given, walking or being ambulatory, that's a gift. And when she told me that, it really resonated with me. I got in the car, and was driving back home, and I was like, that is so huge, what we're doing. She attributed it to, in part for him engaging in this program, because it somehow has resonated with him. And like, it just lit this fire. 

I had another one, Jennifer had mentioned this earlier about people who were post stroke and when they're you six months to a year and then in essence, support fizzles out, right? It's nonexistent, right, for a lot of people when it comes to therapies like physical therapies. A member told me that her daughter has never been so physically active than when she's with our group. And she had physical therapists, according to the mom. To me, that was another win. So, little stories like that, anecdotal stories that coming from the caregivers and the family members. That just makes it all worthwhile. Like it's a good shot in the arm. It reminds me of really why we do this.

Interviewer  1:03:03

Well, I think those are all inspirational and motivating reflections. And I really, really appreciate the three of you making the time and sharing this project for this podcast interview today. Thank you so much, Michelle, and Jennifer and Albert. It is a joy to watch. You all collaborate and be in those classes and dance and move and do all the different things you make us do. It's really just wonderful. So thank you.

Albert Mendoza  1:03:35

It looked like you were just doing the robot. Is that what that was?

Interviewer  1:03:40

No, that was the YMCA thing... I was putting together all of the dances into one gesture. 

So anyway, I just want to thank you again for being our guests today for this podcast. And for more information on Aphasia Access, and to access our growing library of materials, go to www.aphasia access.org. And if you have an idea for a future podcast series topic, email us at info@aphasiaaccess.org. And just thanks again for your ongoing support of Aphasia Access.

References and Resources:

Blonski, D. C., Covert, M., Gauthier, R., Monas, A., Murray, D., O'Brien, K. K., ... & Huijbregts, M. (2014). Barriers to and facilitators of access and participation in community-based exercise programmes from the perspective of adults with post-stroke aphasia. Physiotherapy Canada, 66(4), 367-375.

Dalemans, R., Wade, D. T., Van den Heuvel, W. J., & De Witte, L. P. (2009). Facilitating the participation of people with aphasia in research: a description of strategies. Clinical Rehabilitation, 23(10), 948-959.

Gravier, M., Mendoza, A., Sherwood, J. Feasibility and Effectiveness of an Online Exercise Group to Promote Physical Activity in Chronic Aphasia Presented at Western Society for Kinesiology and Wellness Virtual Conference,  October 8th, 2021 https://osf.io/a85m4/

Harnish, S. M., Rodriguez, A. D., Blackett, D. S., Gregory, C., Seeds, L., Boatright, J. H., & Crosson, B. (2018). Aerobic exercise as an adjuvant to aphasia therapy: Theory, preliminary findings, and future directions. Clinical therapeutics, 40(1), 35-48.

Luck, A. M., & Rose, M. L. (2007). Interviewing people with aphasia: Insights into method adjustments from a pilot study. Aphasiology, 21(2), 208-224.

Neils-Strunjas, J. Aging Gracefully with Exercise and Social Engagement. C-STAR lecture, February 26th, 2021 https://www.youtube.com/watch?v=kLwrc_fukCw

Neils-Strunjas, J., Crandall, K. J., Ding, X., Gabbard, A., Rassi, S., & Otto, S. (2020). Facilitators and barriers to attendance in a nursing home exercise program. Journal of the American Medical Directors Association.

Nicholson, S., Sniehotta, F. F., Van Wijck, F., Greig, C. A., Johnston, M., McMurdo, M. E., ... & Mead, G. E. (2013). A systematic review of perceived barriers and motivators to physical activity after stroke. International Journal of Stroke, 8(5), 357-364.

Pearl, G., & Cruice, M. (2017). Facilitating the involvement of people with aphasia in stroke research by developing communicatively accessible research resources. Topics in Language Disorders, 37(1), 67-84.

Sandberg, C., Madden, E. B., Mozeiko, J., Murray, L.L., &  Mayer, J.F. (May, 2021). Therapeutic effects ofexercise in stroke and aphasia recovery. [Conference Presentation]. Clinical Aphasiology Conference, online.

Sherry Zak Morris, Yoga Vista https://yogavista.tv/instructor/sherry-zak-morris/

Wallace, S. E., Donoso Brown, E. V., Saylor, A., Lapp, E., & Eskander, J. (2020). Designing Occupational Therapy Home Programs for People With Aphasia: Aphasia-Friendly Modifications. Perspectives of the ASHA Special Interest Groups, 5(2), 425-434.

Dr. Janet Patterson, Research Speech-Language Pathologist at the VA Northern California Healthcare System, speaks with Rob Cavanaugh of the University of Pittsburgh, about dosage in delivering aphasia treatments, and about the difference between dosage in research settings and dosage in clinical settings.

In today’s episode you will hear about:

• The concept of voltage drop, its definition, and how it applies to aphasia rehabilitation,
• Opportunity cost and factors that affect the ability to deliver a treatment protocol with fidelity to the research evidence, and
• Mindful clinical decision-making to assure delivery of the best and most efficient treatment possible within existing clinical parameters.

Janet Patterson: Welcome to this edition of Aphasia Access Podversations, a series of conversations about community aphasia programs that follow the LPAA model. My name is Janet Patterson, and I am a Research Speech-Language Pathologist at the VA Northern California Healthcare System in Martinez, California. Today I am delighted to be speaking with my friend and an excellent researcher, Rob Cavanaugh, from the University of Pittsburgh. Rob and I have had several conversations about aspects of aphasia rehabilitation, beginning when he was a Student Fellow in the Academy of Neurologic Communication Disorders and Sciences. Our conversation today centers on a topic we both have been thinking about, dosage and aphasia treatment. 

As Rob and I start this podcast, I want to give you a quick reminder that this year we are sharing episodes that highlight at least one of the gap areas in aphasia care identified in the Aphasia Access White Paper, authored by Dr. Nina Simmons-Mackie. For more information on this White Paper, check out Podversations Episode 62 with Dr. Liz Hoover, as she describes these 10 gap areas, or go to the Aphasia Access website. 

This episode with Rob Cavanaugh focuses on gap area 4 - Insufficient intensity of aphasia intervention across the continuum of care. Treatment intensity is not a singular concept, but rather has several components to it, including decisions about dosage. Much has been written about intensity in aphasia rehabilitation, however, as yet there is no clear and convincing argument about what, exactly, is the best intensity for delivering an aphasia treatment to an individual with aphasia. I hope our conversation today can begin to shed some light on this topic. 

Rob Cavanaugh is a third year Ph.D. candidate in the Department of Communication Sciences and Disorders at the University of Pittsburgh. Before moving to Pittsburgh, he worked as a clinical speech-language pathologist in Charlotte, North Carolina, in outpatient and inpatient rehabilitation settings. His research interests focus on identifying implementation gaps in aphasia rehabilitation, improving patient access to therapy services through technology, improving treatment outcomes, and advancing statistical methods used in aphasia research. Rob received his master's degree in Speech and Hearing Sciences from the University of North Carolina at Chapel Hill. He is currently doing interesting work at Pitt, and I look forward to our conversations, Rob, today and in the future. Welcome, Rob to Aphasia Access Podversations.

Rob Cavanaugh: Thanks Janet, it's great to be here, and I'm really excited to talk about dosage and aphasia treatment. 

Janet: Great! I think the only thing I'm going to have to worry about Rob, is keeping us contained because we could probably talk for days on this subject, and our listeners would get tired of hearing us. 

Rob: That is definitely true.

Janet: Today, as I said, Rob, I'd like to talk to you about dosage and aphasia treatment.  You and your colleagues recently published a paper in AJSLP that compared dosage in research papers and dosage in clinical practice. The team did great work, and I think it's an impressive paper. As we try to create an effective and efficient treatment program for our clients with aphasia, one of the elements we consider is dosage of the treatment we select. Simply defined, dosage can be thought of as the amount of treatment provided at one time, how often that treatment is provided, and the length of time the treatment lasts. We sometimes hear the terms session length, frequency and duration. Would you agree with that definition, Rob? 

Rob: Thanks, Janet. I'm really excited about this work, and I want to take a minute to acknowledge the research team on this project before we really get into dosage because it really was a big team effort. Christina Kravetz is a clinical speech language pathologist here in Pittsburgh, Yina Quique, who is now a postdoctoral fellow at Northwestern, Lily Jarold who is now working on her clinical master's degree at the University of South Carolina, and Brandon Nguy who I think you had on an Aphasia Access Podversations a couple weeks ago to talk about his presentation and some of his work analyzing demographic trends in these data. I should also acknowledge our funding sources, which include the School of Health and Rehabilitation Sciences here at Pitt, and the National Center for Advancing Translational Sciences.

I think that's a good definition to get us started talking about dosage. We know that the amount of treatment is most often reported in terms of time, how many minutes in a treatment session, or how often sessions occur, or how many total sessions are there. But perhaps I can add one more dimension to our discussion about dosage, which is that it's not just how much treatment occurs in terms of time, but also what the treatment is made up of, what are the activities that we're doing within the treatment? How many times do we do them in a session? Or how many times do we do the activities per hour of treatment? As much as I'd like to think of dosage and aphasia treatment as an analogy to taking an antibiotic, such as when you have strep throat or some infection, you take 250 milligrams twice a week for two weeks. Dosage in aphasia rehabilitation is probably not that straightforward, right? Our treatments are complex and holistic and answering questions like how much of something gets really tricky really quickly.

Janet: I can imagine, and you know, when we first started talking about dosage several years ago, people used exactly that analogy. It’s hard to appreciate that analogy because therapy is not this little unit of a pill or a tablet, it's a complex interaction between people. When we think about dosage, sometimes as clinicians we can decide dosage for our treatment, but sometimes it may be imposed upon us by an external source, such as our workplace or healthcare funder. And while it's important that we take guidance from the literature to determine dosage, I am not sure that that always happens. Rob, you are both an aphasia clinician and an aphasia researcher, how did you get interested in thinking about dosage as it relates to aphasia treatment?

Rob: I am a clinician by training, and that's really the viewpoint with which I started. Like you mentioned, I worked primarily in outpatient rehab settings, where most of the individuals who came into our clinic were home from the hospital, and they were working to recover from a recent stroke or traumatic brain injury or brain cancer, or some similar life-changing event. I think you're right, that practical dosage in a clinical setting like this is some combination of the clinical decision-making that we do as expert speech-language pathologists, and then all of these real-world constraints around us such as insurance, clinician availability, or the client's ability get to the clinic on a regular basis. I was fortunate to have excellent mentors and I'm going to acknowledge them. MaryBeth Kerstein, and Lisa Hunt and Missy Davis at Carolinas Rehab, were expert clinicians for me as a novice coming in. They really knew how to navigate their clinic, what they wanted to do from a clinical standpoint, and then what they were looking at in the insurance paperwork, and what to do when the patient said, “Well, I can only get here once a week”. My interest in dosage really comes from the perspective of, I've got this treatment, and it requires a lot of dosage and I want to fit it into a very narrow window of time. As a clinician you're grateful to have twice weekly sessions for six or eight weeks, and then you read a treatment study and it said that it provided treatment for 20 or 30, or even 60 hours. That's really hard to do in practice. So you know, we want to be confident that if I'm going to go with a treatment, if I'm going to choose it, I'm not wasting someone's time because I don't have enough of it for the treatment to be effective. And I'm also not wasting time by doing too much of it.

Janet: That's so important to think about Rob. You also mentioned something else, patient characteristics. Can an individual get to the clinic as much as they need to? Are they motivated to participate in this treatment? Those pieces must factor into your decision as well.

Rob: Sure, and you know, I think about some of our really high intensity treatments. Here at the Pittsburgh VA, we recently completed an ongoing study of semantic feature analysis which provides 60 hours of SFA. That's a lot of time to be doing a single treatment and so certainly motivation is a really important piece that we have to fit into the conversation about dosage.

Janet: As an aside, I'm sure you know, we're doing some investigation into motivation and what it means and how it works and how we can best use it in treatment, but it certainly is part of the decisions that you make when you when you select a treatment. I am glad that you're thinking about these pieces, because they're all focused on getting the most effective, efficient treatment that we can for a patient, and you're right, not wasting time or resources. 

In your recent publication, Rob, you approach the topic of treatment dosage by identifying the gap between the dosage reported in research studies and the dosage used in clinical practice. By the way, the link to that paper is at the end of these Show Notes. It appeared in AJSLP so our listeners can access that paper and read your work for themselves. In that paper, you and your colleagues use the term voltage drop to describe this difference between research and clinical application. Will you explain the term voltage drop to us and describe how you see its relevance to aphasia treatment?

Rob: Sure, so voltage drop is this idea that when you take an intervention that worked in a controlled research setting, and we saw some good results, and then you implemented that scale in the real world. You give it to clinicians and while they might use it in their clinical practice, there can be a reduction in how effective that intervention is, right? The real world is messy, it's often hard to implement the research protocol with high fidelity, or there are good reasons to alter the protocol for individual situations, but we don't know how those alterations might affect the outcomes – this is voltage drop. This idea has been around in the implementation science literature for quite some time. I actually first heard this term on another podcast called Freakonomics, which is very different from what we're talking about today. It was in the context of how do you scale up social interventions like universal pre-kindergarten, and the challenges that come with finding something that works in one situation and trying to bring it to the whole country? And I thought, “Oh, this is exactly what I've been worrying about in our clinical practice world.” How do we take something that works in a small, controlled setting and make it work in larger settings throughout the country, in clinical settings? The term voltage drop seemed like a great way to motivate the conversation in our paper about dosage. If we can't implement the same dosage in clinical practice that we see in research, we could see a voltage drop in our treatment effectiveness for people with aphasia.

Janet: Right. I like that that term. Rob, as I was listening to you talk about this term voltage drop, it reminded me of phases in research, where you start out by demonstrating that the technique works in a research environment, and then moving it to a clinical environment to see exactly how it does work. I also thought about how we as clinicians need to be mindful that when we implement a treatment, if we can’t meet the conditions in the research treatment, if we aren't taking into consideration this potential voltage drop as we implement treatment, we may not be doing the best job for patients. Does that make sense to you?

Rob: Yeah, I think it's a really hard balance as a clinician. You might have treatment which you feel like would be particularly helpful for someone. But the literature says this treatment has been implemented for 30 or 40 or 60 hours in the research lab and you're looking at the paperwork for this person which says that they have 20 visits, and you're wondering how you're going to make that work? Should you use a different treatment that doesn't seem to have as much dosage in the literature, or should you try to fit that treatment into what you have with that person? I think those are questions we don't have good answers to yet and clinicians struggle with all the time.

Janet: Which leads me to my next question for you. As clinicians recognizing the situation, how should we use this concept of voltage drop as we determine an individual's candidacy for a particular aphasia treatment technique, and determine treatment dosage in our own clinical settings? That’s a loaded question, by the way!

Rob: That's a great question. I think this area of research has a long way to go before we really have any definitive answers. I think this idea of voltage drop right now perhaps is just something that can play a role in our clinical decision-making process when we go about implementing the aphasia treatment literature with our clients on a daily basis. For example, we often deviate from the evidence base in ways we think will improve our treatment outcomes, right? We personalize our treatment targets so that they're motivating and relevant for our client’s goals. We might integrate multiple treatment approaches together or provide two complimentary approaches at the same time to address multiple goals. These adjustments reduce how closely our practice matches the evidence base for a treatment, but hopefully they improve the outcomes. On the other hand, we often have to make these compromises that we're talking about and deviate from published protocols because of practical constraints in ways that could reduce effectiveness. Not being able to even approximate a published treatment’s dosage because of insurance or clinician availability or transportation has the potential to reduce treatment effectiveness. I think these factors probably should play a role in whether or not we choose a particular treatment approach. Maybe we use the difference in the published dosage versus what face to face time we know we're going to have to make a determination about how much home practice we suggest the person do. Or maybe we say there's just too big of a difference in what I know I can do with this person, and I need to think about other treatment options. 

I'd also like to add maybe an important caveat here, which is that I don't know of any aphasia treatment, and I would love for somebody to email me and tell me what study I haven't read yet, but I don't know of any literature that has established an optimal dosage for even an average person with aphasia, and certainly none that say if you see a person with aphasia with a certain profile you need to provide at least X minutes of this treatment for it to be effective. Most of our evidence base tells us about the average effect size across participants for a single dosage. And it's really hard to extrapolate this information to make decisions about an individual person with aphasia.

Janet: I think you're absolutely right, Rob. I have not read a paper about optimal dosage for any kind of a treatment either. And one of the things that I was thinking about as you were talking is that I want to assure clinicians that we're in a messy world here trying to figure out dosage and intensity. I want clinicians to be able to continue to walk through their clinical decision-making without trying to figure out how all these pieces fit together in treatment. The words that came to my mind, as you were talking about strategies that clinicians might use as they decide whether they want to use a particular treatment or not, is mindful clinical decision-making. If you choose a treatment knowing that you cannot deliver the number of sessions that are listed in the research literature, then what are you balancing or what are you giving up in order to implement that treatment? It's mindful decision-making, as you apply a treatment. Does that make any kind of sense to you in terms of looking at dosage?

Rob: Yep. I think that makes a lot of sense. It brings up this idea to me of opportunity cost, right? Imagine a decision tree of things or directions you could go as a clinician, and every branch of that tree that you could take means that you don't get to take the other branch. This could be a paralyzing decision-making process if you try to incorporate too much, but maybe dosage is one of those key elements that you say, “I'm going to prioritize, making sure dosage is at least approximate. Maybe I can't get 30 hours, but I can get close, so I feel confident that's not going to limit my treatment’s effectiveness.”

Janet: I think it is important to pay attention to dosage. Don’t just proceed with random assumptions about dosage but pay attention to it as you're deciding to implement a treatment.

We've talked a lot about the background and the importance of dosage and mindful clinical decision-making from a clinical perspective. I hope our readers know by this time that that the comments you're making are based in science, so I want to talk for a little bit about your paper in AJSLP, if we can. I mentioned already that the reference is listed below in Show Notes that accompany this podcast, and our listeners can also find it by searching the ASHA publications website, and also your University of Pittsburgh website, on the Communication Sciences and Disorders page and the Language and Cognition Lab page. You have two methods in this paper, analyzing hospital billing data, and also conducting a scoping review of the literature. Without delving too far into the details, will you tell us about these methods and how they allowed you to then examine the research-practice dosage gap?9

Rob:  Sure, I'm happy to summarize. I learned, you know, halfway through this project that I bit off quite a quite a bit of research. It was a pretty large project for me as a doctoral student! Our driving research purpose for this study was to estimate how well the typical dosage that was provided in clinical practice approximated what was provided in the research literature. There are two elements here, what's typical in clinical practice and what's typical in research. In particular, I was interested in outpatient clinical practice, because this is often the last stop in our rehabilitation medical model for people with aphasia, and it's where my clinical experiences had mostly been. To estimate dosage in clinical practice, we looked at billing data from a large regional provider in western Pennsylvania. Every time an SLP sees a client they have to bill a specific code to the insurance company for that visit. These codes are attached the electronic medical record and we were able to use resources in Pitt’s Department of Bioinformatics to extract these billing codes. We counted them all up for people with a diagnosis of stroke and aphasia who were seen by a speech-language pathologist. We looked to see how many were there? How often do they occur? Over how many weeks did they occur? We don’t, of course, know the extent to which these specific providers match the rest of the US or certainly not international clinics, but we felt like this was a good start, given the lack of information in the literature. 

Then on the research side, we wanted to estimate the typical dosage for studies that had been published recently. If we looked back 30 years, we'd probably still be reading research articles, so we used a scoping review format because our research question was really focused broadly on dosage rather than the specific study designs, the quality of the studies, or the outcomes, we just wanted an estimate of the dose. I have to give a shout out here to Rose Turner, the librarian on our team at Pitt, who guided this aspect of the study, I strongly recommend anyone use a librarian for reviews like this, we could not have done it without her. We started with over 4500 study records which matched our search terms and we whittled them down to 300 articles.

Janet: That's a lot of work, Rob. 

Rob: It was definitely a lot and I will say we have a team, right? This was not me, this was a team effort. We ended up with about 300 articles, which essentially describe the aphasia treatment literature over the past 10 years or so. These were not studies that were provided in the hospital, these are mostly community-based treatment studies. They didn't have any extras, like the people receiving treatment weren't also receiving a specific medication or some kind of brain stimulation, it was just behavioral treatment. We pulled the dosage out of these studies and then we compared them to what we found from our billing data.

Janet: I read the paper a few times, and I'm not unfamiliar with a scoping review or with gathering data from clinical records. I found myself as I was reading that paper thinking this must have taken you years and years and years, which of course, I know it didn’t, but your team really has, I think, produced a great paper that is going to be a good foundation for us to think about dosage.

That's a wonderful summary of the methods you used and anybody who reads your paper will appreciate the summary that you just gave. What messages did you glean from the data that you collected? I am thinking of the specific research conclusions, and also messages that maybe might help us as clinicians?

Rob: Sure, so I don't think it's a surprise to any clinician out there that there was a meaningful gap in dosage between the research studies we looked at and the billing data. This was particularly true for the number of treatment hours. Research studies provided on average about 12 more hours of treatment than we found in the clinical billing data. That's per episode of care. Think about a person who comes into the clinic, has an evaluation, receives a number of treatment sessions, and is discharged. On average, that episode of care has about 12 hours less than your typical research study. This largely confirmed our hypothesis going in that we would see a gap here. Interestingly, clinical practice seemed to provide treatment over a longer period of time. The total number of weeks was longer than what was typically done in research studies. You might take a conclusion away that in at least outpatient clinical practice, treatment might be a little bit more distributed over time and less intensive than treatment provided in our research literature. 

I think it's important to highlight that this is a really rough comparison of dosage, right? Billing data are not really specific to the clinician patient interaction. It's just the code that the clinician punches into their software when they're done. We've glanced over some important aspects here that we just weren't able to look at. For example, dose form, or how many times each element of a treatment was completed, is not something our study was able to look at. These are some of the most important aspects of treatment, and what I try to do as a clinician, such as goal setting, and counseling and education, the time working on our communication goals outside of impairment focused tasks. Those elements aren't often part of treatment studies, but they're absolutely part of clinical practice, and they take a lot of time. That's an unaccounted-for difference that could mean that we've underestimated this gap and dosage. On the other hand, clinicians often assign home practice; we work on something in the face-to-face session and then I say, great, you've done an amazing job, I want you to practice this 20 minutes a day until the next time you come in, something like that. We didn't have a way of tracking home practice in our study. Perhaps home practice is an effective way of making up this dosage gap. But we're not able to understand what role it might play based on these data.

Janet: I think you're right about that, and it makes a whole lot of sense. This is a start in our direction of trying to really understand more carefully what dosage means. Does it mean this large thing? Does it mean very specifically, how many times are we delivering the active ingredient in a specific therapy? There's so much more that we need to know, and I think you have figured out by now that I think dosage matters, I think it matters a lot. I think it matters a lot more than we've ever really paid attention to. I know also, and you've certainly described this, every day in clinical practice we make decisions about an individual's candidacy for rehabilitation, including that what we think as clinicians is the best match between a treatment, a patient's personal and aphasia characteristics that they bring to the rehabilitation enterprise, and the likelihood of an optimal outcome. If we get it wrong, because of a mismatch in dosage, we may not successfully translate research into practice, and we may not make that much of a difference in our patient's life, or at least we may not make as much difference as we hope to. In the case of a potential mismatch, how do you see that affecting our clients, their families, and our healthcare system, because we do have to think about all of these pieces of the aphasia rehabilitation enterprise.  

Rob: I think you're right you know, this is just a start. When I started my doctoral program at Pitt Dr. Evans and I were working on grants, and we would always write a statement like, treatment services are limited, and then I'd go try to find the citation for that line, and it's hard to find. Dr. Simmons-Mackie’s White Paper is fantastic and provides a little bit of evidence to that regard but there aren't a lot of numbers. So, I think you're right that this is not the end of the story, I'm hopeful this study is a start. I think if you buy into this idea that too much of a gap in dosage could result in voltage drop in our treatment effectiveness and poor outcomes, I'm concerned that our ability to help people with aphasia and their families recover and adjust and thrive with their new reality is diminished in real world clinical practice. That's a big concern for me, and that's the reason that I am a speech-language pathologist and working with people with aphasia. I think that's something we need to understand better as a field. I'm also aware that when somebody decides to come to treatment, they're dedicating time and energy to themselves and trusting us as clinicians that we know how to best use their time and energy. The time spent coming into the clinic or doing home practice could just as easily be spent with family or friends or in other fulfilling activities, so I want to be respectful of their time. 

With regard to how this could affect our health care system, I don't know that I have a great answer for you. Sometimes I wonder whether the current medical model is really a good fit for chronic conditions like aphasia. The gap in dosage might just be one manifestation of the challenges that clients and families and clinicians face every day, in figuring out how to make affordable and effective and motivating treatment options available for people long term. That's got to be a priority for us moving forward, because I'm not sure that our current model really fills that need.

Janet: Rob, I agree with you on that, and I'm thrilled that you and your colleagues are making this initial attempt to try to figure out how we can best match the treatment and the clients in terms of dosage, to achieve the optimal outcome that we possibly can.

You know, Rob, that I think that this conversation is fascinating, and we could talk all day. My belief is you and your team have just scratched the surface about treatment delivery information that we must be mindful of, in both our research and our clinical practice. A lot today that we've talked about really relates to clinical practice, but I imagine there are just as many thoughts or concerns or cares that we need to take when engaging in a research protocol to evaluate the success of a treatment. 

Rob, as we draw this interview to a close, what pearls of wisdom or lessons learned do you have for our listeners, both researchers and clinicians, about dosage and aphasia rehabilitation, bridging the research-practice dosage gap, and reducing the voltage drop as we implement aphasia treatment.

Rob: Yeah, it's a tall order.

I don't think there's a quick fix, certainly, but I I'm going to summarize and expand on some of our recommendations from the paper. One thing that's important, I think, as we move forward is that, as researchers, we need to be really thoughtful about our selection of dose. As you mentioned, with regard to the stage of research, maybe our selection of dosage in early-stage research reflects our underlying research questions and issues of statistical power and funding constraints. For later stage research that's starting to think about clinical outcomes, we need to provide a clear justification for deviating from a dosage that's not attainable in clinical settings. In the same vein, I think as researchers we can do more to provide easily accessible and hopefully free materials to clinicians to facilitate home practice and to augment the limited face-to-face time that clinicians might have with their clients. Software and app development are getting there, and I think they're improving how easy it is to do home practice. To me a treatment study that you want to be out in the real world is only going to be successfully done if you really give clinicians easy access to tools where they can implement it. I know, just like many clinicians know, their time is really limited particularly between seeing patients, and so I don't want to make them do a whole lot of work to implement my intervention. 

The second recommendation from our paper is that we need more research on the role of dose. We've talked about one challenge in this line of work, which is that dosage requirements are probably a function of an individual's language profile, almost certainly a function of their individual language profile, and their individual circumstances. If you compare one dose to another in some group trial, it only gives you so much information about what dose is best for a given individual. I think this is a problem our field is going to have to solve. Our lab is working on one solution that we're really excited about, which is to base treatment dosage not on the number of minutes, or how often you see someone, but on their real time performance on individual treatment items, like their ability to produce a specific sentence in script training or name a word, if you give them a picture. Our lab is not really thinking about dosage in terms of treatment time, right now we're thinking about dosage at the item level individually for each person. We're finding some strong preliminary evidence that complex algorithms can tailor item level dosage to real time performance and can make treatment potentially more effective and more efficient in terms of how much we can do in a period of time. But we have a lot more work to do, establishing this in a larger sample size and making sure that it translates well to clinical practice. 

This brings me to the last recommendation, which is we need more research that looks at how can we implement our research in clinical practice. I believe there was a paper that came out in AJSLP recently (Roberts et al., 2021) which found that 1% of studies published in the Asha journals were implementation focused. I think that number is too low. We need more implementation-focused research that has contributions from all stakeholders, people with aphasia and their families and clinicians and researchers. It's going to take a team working together to ensure that we can translate our evidence base to clinical practice without voltage drop. I think that's where I would love to see our field headed. 

Janet: Rob, I love the recommendations from your paper and the way that you just described them. It's exciting to be in this time in our field, where people like yourself and your team are thinking about the idea that we've got some great therapies, now how do we deliver them in ways that are sensitive to the needs of the clinician and the needs of the client and delivered in a mindful way of clinical decision-making. 

Thank you for all of those recommendations and for your work. You're going to do more, right?

Rob: Thank you for having me. Yes, there will be more.

Janet: This is Janet Patterson, and I'm speaking from the VA in Northern California, and along with Aphasia Access, I would like to thank my guest, Rob Cavanaugh, for sharing his knowledge and experiences with us as he and his colleagues investigate treatment parameters, including dosage, in aphasia rehabilitation. We look forward to seeing many additional articles on this topic from Rob and his colleagues. 

On behalf of Aphasia Access, we thank you for listening to this episode of The Aphasia Access Conversations Podcast. For more information on Aphasia Access, and to access our growing library of materials, please go to www.aphasiaaccess.org. If you have an idea for a future podcast topic, please email us at info@aphasiaaccess.org. Thank you again for your ongoing support of Aphasia Access.

References and links from this episode:

University of Pittsburgh

Department of Communication Sciences and Disorders

Language Rehabilitation and Cognition Lab

https://lrcl.pitt.edu 

@pittlrcl 

University of Pittsburgh 

Department of Communication Sciences and Disorders

@PittCSD 

Cavanaugh, R., Kravetz, C., Jarold, L., Quique, Y., Turner, R., & Evans, W. S. (2021). Is There a Research–Practice Dosage Gap in Aphasia Rehabilitation? American Journal of Speech-Language Pathology. https://doi.org/10.1044/2021_AJSLP-20-00257

Roberts, M. Y., Sone, B. J., Zanzinger, K. E., Bloem, M. E., Kulba, K., Schaff, A., Davis, K. C., Reisfeld, N., & Goldstein, H. (2020). Trends in clinical practice research in ASHA journals: 2008–2018. American Journal of Speech-Language Pathology, 29(3), 1629–1639. https://doi.org/10.1044/2020_AJSLP-19-00011

Jerry Hoepner, a faculty member in the department of Communication Sciences and Disorders at the University of Wisconsin – Eau Claire, interviewed six very bright students about their experiences at the Aphasia Access Leadership Summit. Today, Dr. Hoepner is joined by Robin Pollens, from Western Michigan University to discuss their contributions and chat about student learning. So, get ready to kick back and enjoy these fabulous conversations.

As the title implies, we heard from six students from Florida, Michigan, Wisconsin, and California. They all attended the 2021 Aphasia Access Leadership Summit. Today, they will share a bit about their experiences and highlight why it is so important to engage students in Aphasia Access and teach them about the LPAA. I am joined by Robin Pollens, who many of you know as a wise teacher and mentor. She shares her perspectives on teaching and mentoring LPAA and some of the lessons she has learned from students. You’re in for a treat!

Abby Joski is a first-year graduate student at the University of Wisconsin – Eau Claire who served as a student ambassador at the Leadership Summit. She has served as a student clinician for the Blugold Aphasia Group and Chippewa Valley Aphasia Group. 

Summer Marske is an undergraduate student, senior, at the University of Wisconsin – Eau Claire who also served as a student ambassador at the Leadership Summit. She helped compose many of the daily summaries at the summit. 

Raveena Birdie is now a clinical fellow, formerly a graduate student at Cal State East Bay under the mentorship of Ellen Bernstein-Ellis. She and her peers gave a wonderful presentation on aphasia choirs and were awarded the inaugural Aphasia Access Student Presentation Award. 

Nick Malendowski is a student at Central Michigan University who participated in the Strong Story Lab and collaborated on a project with Dr. Katie Strong and Dr. Jackie Hinkley on stakeholder engaged research. 

Brandon Nguy is an undergraduate student at the University of Pittsburgh, mentored by Dr. Will Evans. Brandon gave a wonderful presentation on a scoping review of gender representation in aphasia research at the summit. 

Clarisse El Khouri Faieta is a graduate student at Nova Southeastern University. She collaborated on a project with Dr. Jackie Hinkley and Dr. Katie Strong within the Project Bridge program on stakeholder engaged research. 

We know that there are many more student voices and we value each and every one of them. For now, listen in on these fantastic students and you can refer to interview transcripts to see their wonderful definitions of the LPAA highlighted in yellow within the transcript. 

Take aways:

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.