Aphasia Access Conversations

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 [email protected]. 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 [email protected] Thank you again for your ongoing support of Aphasia Access.

References

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

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

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

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

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

Ilias [email protected]

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-9th Edition) and we might take the scores, and we sum them up and say, "hey, this person they're above a cut off". But in that kind of approach, we're also missing what these individual symptoms are doing. The person might not endorse every single symptom in that scale. But they might endorse some symptoms. So are we just going to say, "no, they didn't meet a cut off, but they had three symptoms that they were on the scale. For example, 'I was sad. I was fatigued, I had a loss of appetite." But everything else wasn't there. Are we just going to negate those symptoms? So how do we take these symptoms into account as well, when we are thinking about depression. Within the broader field of psychopathology, there's a lot of movement thinking about individual symptoms as well. So, I'm just basically taking that and applying it to our field. It's nothing new that I'm coming up with, rather is just really seeing what people in the field of psychopathology are doing, confronting all these problems. And thinking about how this can applied to our field, because they might really have a direct impact on something we're doing when it comes to treatment, right? For example, if we start thinking about individual symptoms and that day a person is fatigued. Well that might directly impacted how they respond to treatment rather than just as a sum score. So that's another angle I'm taking when it comes to this work and depression.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Resources Referenced in Episode

Project BRIDGE

www.projectbridge.online

Email: [email protected]

Twitter @ProjectBridge3

Facebook @bridgeresearch

Instagram @projectbridge2

Dr. Jackie Hinckley - [email protected]

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 [email protected]. 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 [email protected]. Thanks again for your ongoing support of Aphasia Access.

References and Resources

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

​​Twitter: @Kathryn_SLP

Aphasia CRE:

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

Twitter: @aphasiacre

Facebook: aphasiacre

Australian Aphasia Association:

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

Twitter: @AusAphasiaAssoc

Facebook: AustralianAphasiaAssociation

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

Guests:

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

Slow Road to Better Podcast Team Members:

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

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

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

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

Chris Vincent

Dante Thomas

Listener Take-aways

In today's episode you will:

• Learn how interprofessional education with physical therapists led to the launch of this member-focused aphasia podcast.
• Find out how the members prepare for the podcast by embracing spontaneous conversation
• Listen to members share insights on the benefits of being part of the SRTB podcast
• Hear the podcast team share the insight that even though aphasia is not "leaving it, but we'd like to crush it a little bit." Crush it, they do!

Edited show notes

Ellen Bernstein-Ellis 00:54

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

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

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

Ellen Bernstein-Ellis 03:21

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

Chris 03:48

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

Ellen Bernstein-Ellis 03:58

So traumatic brain injury.

Chris 04:01

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

Ellen Bernstein-Ellis 04:19

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

Chris

Twenty seven

Ellen Bernstein-Ellis

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

Chris

10 years.

Ellen Bernstein-Ellis 04:31

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

Chris 04:36

Since the beginning? So six, seven years?

Ellen Bernstein-Ellis 04:40

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

Chris 04:47

That's correct.

Ellen Bernstein-Ellis 04:48

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

Kitti 04:56

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

Ellen Bernstein-Ellis 05:10

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

Kitti 05:15

Two years, two years and now.

Ellen Bernstein-Ellis 05:18

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

Kitti 05:27

Oh, wait, wait, wait.

Ellen Bernstein-Ellis

What else?

Kitti

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

Ellen Bernstein-Ellis 05:32

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

Pat 05:42

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

Ellen Bernstein-Ellis 05:56

And how long have you been a podcast member?

Pat 05:58

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

Ellen Bernstein-Ellis 06:00

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

Erin 06:19

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

Ellen Bernstein-Ellis 06:37

How long ago was that again?

Erin

Ellen Bernstein-Ellis

Okay, so you have a two year old.

Erin 06:42

One and a half. She turns two in July.

Ellen Bernstein-Ellis 06:46

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

Erin 06:50

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

Ellen Bernstein-Ellis 07:01

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

Dante 07:17

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

Ellen Bernstein-Ellis 07:33

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

Dante 07:40

Oh, one year.

Ellen Bernstein-Ellis 07:41

About one year? Okay.

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

Melissa 08:09

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

Ellen Bernstein-Ellis 09:39

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

Melissa 09:43

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

Ellen Bernstein-Ellis 09:50

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

Melissa 09:58

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

Ellen Bernstein-Ellis 10:30

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

Melissa 10:36

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

Ellen Bernstein-Ellis 11:12

Wow, the real stuff or Yeah, stuff.

Melissa 11:14

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

Ellen Bernstein-Ellis 11:29

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

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

Melissa 11:56

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

Ellen Bernstein-Ellis 12:45

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

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

Melissa 13:11

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

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

Ellen Bernstein-Ellis 14:54

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

OPENING ROLL OF SLTB PODCAST PLAYS

Ellen Bernstein-Ellis 16:40

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

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

Erin 17:37

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

Ellen Bernstein-Ellis 18:43

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

Kitti 19:03

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

Ellen Bernstein-Ellis 19:24

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

Kitti 19:35

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

Pat 19:51

I think it's really, like

Ellen Bernstein-Ellis

Is this Pat?

Pat

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

Ellen Bernstein-Ellis 20:09

Oh, I got that wrong.

Pat 20:11

Yeah, even you it happens to you.

Ellen Bernstein-Ellis 20:14

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

Pat 20:23

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

Erin 21:22

Chris and you… went to Marymount?

Pat 21:24

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

Ellen Bernstein-Ellis 21:49

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

Pat 22:11

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

Ellen Bernstein-Ellis 22:15

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

Pat 22:21

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

Ellen Bernstein-Ellis 22:47

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

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

Dante 23:09

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

Ellen Bernstein-Ellis

That's beautiful, Dante.

Dante

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

Ellen Bernstein-Ellis 24:12

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

Chris 24:52

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

Ellen Bernstein-Ellis 25:28

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

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

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

Chris 26:22

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

Ellen Bernstein-Ellis 27:03

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

Kitti 27:19

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

Ellen Bernstein-Ellis

Help me with this.

Melissa 28:09

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

Pat 28:12

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

Kitti

Yes.

Ellen Bernstein-Ellis 28:54

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

Kitti 29:13

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

in-Ellis 29:26

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

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

Melissa 29:40

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

Ellen Bernstein-Ellis 30:42

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

Erin 30:52

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

Chris 31:21

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

Ellen Bernstein-Ellis 31:28

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

Chris 31:54

Absolutely.

Dante 31:56

No Filter? (Laughter)

Ellen Bernstein-Ellis 31:59

What was that? Dante?

Dante 32:00

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

Chris 32:32

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

Erin

Yeah!

Pat 33:35

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

Ellen Bernstein-Ellis 33:39

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

Erin 33:42

Melissa will get us back on target.

Ellen Bernstein-Ellis 33:45

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

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

Ellen Bernstein-Ellis

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

Chris 34:13

So, Do More 24…

Dante

Slide in...slide in. (Laughter)

Ellen Bernstein-Ellis 34:18

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

Group (laughter)

Chris

Oh yeah,

Pat

It's too late.

Melissa 34:24

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

Chris

Damn it!

(Group laughter and some good natured pandemonium.)

Pat

Different math. It's different math.

Ellen Bernstein-Ellis 34:38

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

Pat 34:43

Different math.

Ellen Bernstein-Ellis 34:43

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

Kitti 35:01

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

Ellen Bernstein-Ellis 35:17

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

Kitti

Yes.

Erin 35:20

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

Ellen Bernstein-Ellis

Excellent.

Kitti 35:27

Is SAYyoungaphasia channel. YouTube. Check it out.

Ellen Bernstein-Ellis 35:31

You guys are getting it out there!

Erin 35:34

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

(Laughter)

Ellen Bernstein-Ellis 36:18

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

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

References and Resources

• For more info on the Stroke Comeback Center (SCC) use our website: Home - Stroke Comeback Center
• Follow SCC on FaceBook at: Stroke Comeback Center | Facebook
• For access to episodes of the SCC podcast, Slow Road to Better: The Slow Road to Better on Apple Podcasts
• Erin's Instagram: stroke.mama (https://www.instagram.com/stroke.mama)

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

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

In today's episode, you will:

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 [email protected]. Thank you again for your ongoing support of Aphasia Access.

References

[email protected]

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 [email protected]. Thanks again for your ongoing support of Aphasia Access.