By Aphasia Access
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Katie Strong: Welcome to the Aphasia Access Aphasia Conversations Podcast. I’m Katie Strong, a member of the Aphasia Access Podcast Working Group. I'm also a faculty member at Central Michigan University where I lead the Strong Story Lab. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Harold Regier and Dr. Erin O’Bryan. We’ll be talking about the Aphasia-Friendly Reading Approach that Harold developed for his wife, Rosella, who had aphasia and how Dr. O’Bryan took this approach into the lab to refine it for clinicians to use in sessions.
Before we dive into the conversation, let me share a few details about our guests.
First a bit about Harold. Harold R. Regier, B.S. Ed., BDiv. Theol., is a retired minister with a career path in programs addressing social justice issues. In retirement, his spouse, Rosella, had a stroke resulting in aphasia. His passion shifted to becoming an aphasia care partner focused on helping to recover language and communication skills. He is the author of “A Decade of Aphasia Therapy,” subtitled “Aphasia-Friendly Reading: A Technique for Oral Communication,” published in 2021.
Our second guest is Dr. Erin O’Bryan. Erin is an Assistant Professor in the Department of Communication Sciences and Disorders at Wichita State University, in Wichita, Kansas. Her major research, teaching, and clinical interests focus on helping people with aphasia communicate through scripts, stories, and phrases and teaching students and care partners how to support communication. Dr. O’Bryan directs the Wichita Adult Language Lab whose current projects focus on supported storytelling and Melodic Intonation Therapy.
Welcome Harold and Erin. I’m looking forward to our conversation today.
Erin O’Bryan: Thank you, Katie! I’ve been listening to Aphasia Access Podcasts for years, and so many of my heroes have been interviewed in this series. It is really an honor that you invited Harold and I to be on the podcast today!
Katie Strong: I am so excited for our listeners to hear about how the Aphasia-Friendly Reading Approach was developed and expanded. This work is near and dear to my heart – particularly in this unique way of developing and telling stories. I feel compelled to disclose to our listeners that I am grateful to have been involved in this work as it was refined for clinical environments. So, I am going to come right out and say, this is my bias. Harold, I’m a big fan of yours and the Aphasia Friendly Reading Approach and of you Erin for how you brought this approach into the lab and studied it so that clinicians can use this approach.
So, now let’s get started! Harold, can you share a bit with us about how the Aphasia-Friendly Reading Approach came to be?
Harold Reiger: Sure. Thank you so much, Dr. Strong, for the privilege of being here to share just a bit of our story. You know, Rosella and I would have celebrated our 65th wedding anniversary if she had stayed with us just a few weeks longer. We had a very long and very happy marriage. She used to kid me, “We've been together so long we know what the other person will say before he or she says it.” Well, actually, aphasia kind of shattered that theory. But maybe there was a little bit of that was true. Well, anyway, Rosella was a retired public-school teacher with part of her career also involving children's curriculum development. She led many workshops, was a storyteller, and was a frequent guest speaker. Communication and broad coalitions were a strong suit for her.
So, aphasia, loss of language was a huge loss for her. Perhaps that sets the stage for working so hard to restore some major storytelling. But I'm sure this is the same kind of feeling that every person who is a care partner with the person with aphasia has. How did we discover a technique for storytelling through oral reading? Really, I think I just stumbled into it. The cues came from Rosella. She could say many words. She had a strong voice, but she did not put words together in a way that made it possible for a listener to understand what she meant to communicate. So, I was highly motivated, wishing there was a way to help her tell her stories.
Looking back, I now can see three of what I call ‘indicators’ that led me to the technique that I eventually called Aphasia-Friendly Reading. They were painting, reading, and church liturgy. So let me explain. Indicator number one, completely on her own, Rosella began to paint. Just shy of two years after her stroke, Rosella began to paint. She painted for four years. She painted 250 paintings. The choice of her subjects were all hers. Objects, scenery, flowers, roadside sightings, trips and vacations, past memories. And yes, stories, family stories, stories that she didn't have words to tell, but she could tell them with a brush. She gave every picture a title or caption, signed it, and dated it. And somehow she found those one, two, or three words to intelligibly, that is accurately, identify the picture that she had just painted.
But after four years of painting those pictures, she put her paintbrush down, never to pick it up again. And yet I kept remembering that she was able to identify pictures accurately using those few words to explain what it was that she was telling with her pictures. But then indicator number two came, reading periodicals and books. She underlined periodicals with many circles, much underlining. For a long time, Rosella delved through as many as 40 or 50 books per month. She turned every page, but did she understand what she was reading? Frankly, I often wondered and doubted it.
One day, Rosella was reading orally beside me, and I pressed my iPhone video button. Listen to just a few seconds of that reading. And while you listen, think of two questions. Could you understand what she was reading? What was the story that she was trying to tell? And secondly, do you think that Rosella was understanding what she was reading? So listen to that clip.
Excerpt of Rosella reading from a book.
You heard Rosella reading the story of she and her sister, Anna Grace, requesting radio station KNEX out of McPherson, Kansas to surprise their mother by playing it for her birthday. It was a song that the girls knew that their mother loved. And you heard her read those words, “I love those dear hearts and gentle people.” And then as she continued reading the lyrics of that song, she exclaimed, “Oh, Harold”, which was her way of saying how excited she was to recall that particular story. Now, that explanation, of course, was not in the book.
Then there was a third indicator that I recognized, and that was liturgical reading. One day in church we were reading a call to worship displayed on the screen. We were reading responsibly with the leader reading the first line and the congregation reading the second line. I glanced to my side and was surprised to see Rosella reading with the congregation. Maybe it was only the first three or four words of the line, but she read these words accurately. A light went on in my mind. Might this be a hint of how to help Rosella participate in oral reading? Short sentences read with a co-reader who read every other line and written in an easy to follow format? And so I adapted various psalms into very short lines formatted for us to read responsively. I read the first line, she read the second. The result was amazing success. Let me just illustrate by us reading just a very short psalm for you.
This is Psalm 150 that Rosella and I will read together.
H: Praise the Lord!
R: Praise God in his sanctuary.
H: Praise God in his mighty firmament.
R: Praise Him for his mighty deeds.
H: Praise the Lord for his greatness.
R: Praise him with the trumpet.
H: Praise him with the lute and harp.
R: Praise him with the dance.
My thought then was, could we try to write other stories and read them in what I began to call Aphasia-Friendly Reading format and style? And so, I began in earnest to try to write other stories. Short sentences, familiar words, larger font. Each line considered a sentence, even if it was only one word. Label the first line H for Harold and the second indented line R for Rosella. As I started reading and continued to read every other line, this could set the tone, the rhythm, and the pattern for saying every word clearly. I thought it was time to try. And then I began to wonder, is there a setting that we could read stories to others? Could we create an audience in some way?
When COVID hit, of course, I could not see Rosella in person anymore, for an entire year we were separated. And the only contact we had was FaceTime telephone calls. And those were really a disaster because we found it very difficult to communicate with each other when Roselle was not able to understand me and I wasn't able to understand her, except when we read Aphasia-Friendly stories.
And so, I wrote many stories during that year. And we read those stories then as our connection during our FaceTime calls. And somehow we were able to survive COVID. But it was after COVID then that we were able to again get back together occasionally. And I would bring her back to my apartment. And there I would invite friends, usually a couple or two individuals to come over and I would serve waffles. I'm not a kitchen person, but I could make waffles. So, we'd have a simple meal, a simple supper that we could visit with each other and talk about anything that we would like. And Rosella almost always simply said, “I remember exactly”. Because as others told stories that she was familiar with, she could comment that way. Otherwise, her conversation skills were not there. So that was our first hour that we would spend together simply informally visiting with each other. And the second hour that we spent together, we would go to what I would call “my theater,” our living room with a 50-inch television. And there we could read Aphasia-Friendly stories. I would stream the story to the television set. I would have them formatted so that there would be an H for Harold, an R for Rosella, and we would read the story so that the folks who were listening and watching could see the story as well as hear the story. And if we made any mistakes, they could make the corrections in their own mind.
There was a way that she was able to, again, participate. It's worth telling. But there was one waffle evening when she turned to me, and said, “China”. I knew she had a story in mind, but her look said, “you tell it. I can't do it.” And so, I did. It was a story about a cracked tea cup And so I decided certainly next Waffle Night we need to let her help tell that story of the cracked tea cup. Here is that story.
Cracked Tea Cup.
H: This is as story of a cracked tea cup.
R: Harold and I were youth sponsors.
H: Rose was one of the youth.
R: Winifred was her mother.
H: She invited me to her home.
R: “Thank you,” she said.
H: “Thank you for being Rose’s sponsor.”
R: We visited.
H: Before leaving, she said
R: “Let me pray for you.”
H: It was a pray of blessing…
R: …for our work in Mississippi.
H: Then she added,
R: “Wait!”
H: “I have something for you.”
R: She got a tea cup.
H: Erland brought it to me from China.
R: It’s cracked.
H: Put it in your china cupboard.
R: You’ll never use it.
H: “But you’ll remember be when you see it.”
R: Sixty years are gone.
H: This tea cup is still in my china cupboard.
R: And I remember Winifred.
H: It reminds me
R: Of the grace,
H: Of the affirmation,
R: Of blessing,
H: Of the seminary president’s wife.
And so those Waffle Nights became the favorite parts of our week when we could spend time with friends and Rosella could be part of the conversation by reading stories together with me.
Katie Strong: So beautiful! This is really just a fabulous way of having such a natural thing, a shared meal, a celebration to share stories. And it sounds like everybody enjoyed Waffle Nights. So, thank you for sharing, Harold. Erin, I was wondering if come into the conversation a bit more and tell us how you got involved with Harold and the Aphasia-Friendly Reading Approach?
Erin O’Bryan: Thank you, Katie. Even though I've heard Harold's story so many times, I still get teary every time I hear him talk about their year of not being able to see each other during COVID and the Waffle Nights that were just so wonderful. So, I met Harold in 2019 when I first became an Assistant Professor after 10 years of working as an SLP in healthcare. And Wichita State already had a weekly aphasia group, and I couldn't wait to meet the members. So, I went to aphasia group and there I met all of the care partners in the observation room and Harold showed me a video of him and Rosella reading a story together. I had been watching Rosella in the aphasia group and I'd seen that most of her utterances were short one- to two-word phrases and that much of her communication was nonverbal. But then in the video, she was reading full sentences aloud, taking turns with Harold. And what really struck me was that she was so motivated and happy to read the story.
I was so impressed. Harold asked me, “Do you think that other people with aphasia could benefit from doing this?” So many thoughts were running through my mind as we were having this conversation. Earlier in 2019, I had visited Audrey Holland, who was one of my mentors when I was in grad school at University of Arizona. And we'd actually set up this meeting through an online Scrabble chat. She invited me to her home.
Katie Strong: How very ‘Audrey’.
Erin O’Bryan: Yes, it was lovely. And I got to visit her with all her kitty cats. So, I asked her advice because I was applying for an Assistant Professor position after 10 years of working in health care. And I remember that she was so excited about her speechpathology.com video series and the related book that she was working on with Roberta Elman that she liked to call the Social Imperative of the LPAA, which I believe is the subtitle of that book. And Katie, I think you were a part of both the video series and the book.
Katie Strong: I was, yes.
Erin O’Bryan: Well, Audrey just loved that. She was so excited about that, and she told me to learn everything I could about the LPAA. And she said, “I must join Aphasia Access.” She said, “that's where all the important work is happening.” So that year I listened to loads of Aphasia Access podcasts, and I got very familiar with the Chapey and Colleagues LPAA Values chapter.
So then as I'm sitting there talking to Harold, I'm thinking about the LPAA value, everyone affected by aphasia is entitled to service. So, I mean, who is affected more than a spouse? So definitely I was thinking about having the care partner being involved seemed like a wonderful thing. And I was also thinking that Harold and Rosella's approach shared so many similarities with Script Training, which I have loved and have been using in healthcare care since grad school. And there also are similarities with ORLA and Multiple Oral Rereading. And all of these are evidence-based treatment approaches. So, I felt pretty confident that Aphasia-Friendly Reading could be a very valuable intervention. So, I said to Harold, “I'd like to try using your approach with other people with aphasia and their care partners in our clinic”. And Harold was happy for us to try it.
Katie Strong: I love that. I love that. And just for our listeners, we'll put some links and references in the show notes for some of the approaches like ORLA and Script Training that Erin has mentioned in addition to Harold's book and some other some other resources too.
Erin O’Bryan: Yes, thank you, Katie. Those are all wonderful resources for people to be looking at. So, my grad students and I started a pilot study with a woman with aphasia and her husband. And they were actually friends of Harold and Rosella's from their aphasia group. We use the pseudonyms Cora and Dave when we describe them in our papers. It became clear that we needed to make a few adaptations to Harold's approach for use in the clinic. For one thing, I wanted the person with aphasia to have the largest role in selecting the story topic and deciding what she wanted to say. For our first session, we asked Cora and Dave to bring ideas for a story that Cora wanted to tell. And we also suggested they consider bringing some related photos. In our first session, Cora, Dave, my grad student, Addison, and I all sat around the table and together we brainstormed about the story. Cora wanted it to be about a Caribbean cruise that she and Dave had gone on. She brought photos from that trip. Dave helped with supplying names and information about places that Cora wanted to talk about. Places from their shore excursions, such as having their picture taken with a donkey in St. Thomas and visiting the Bomba Shack on the island of Tortola. We got Cora's feedback on every line that was proposed, fine-tuning the story until Cora liked every line. And we also adjusted some of the lines to make them easier for her to say. So once Cora and Dave were happy with the story, we helped them practice during our sessions, one hour per week with my grad student, Addison and I at the clinic. And we gave a printout of the story and a practice log to record notes about their home practice.
In this first pilot project, Cora and Dave practiced their story for eight sessions until Cora said she was ready to plan their story sharing celebration. Then they shared their story with their friends in aphasia group. And the clinicians and the other people with aphasia in the room were just amazed. And other people in the aphasia group said, “I want to do that!” So, after two people with aphasia and their care partners did Aphasia-Friendly Reading projects, I wrote a manuscript reporting the pilot results. And Katie, I had seen online that you were an editor of Perspectives at the time. So, I emailed you my manuscript and asked if it was appropriate for Perspectives. And you emailed me back and said, “let's meet online and talk about it.” I was so delighted that you were interested in my project. You suggested that I consider exploring the value of the intervention by interviewing the participants. And I didn't know anything about qualitative research. But, Katie, you helped me write great interview questions for the care partners. And you helped me learn thematic analysis so we could find the themes in the care partner's quotes. And so, after learning from you, I have come to love the thematic analysis process. I really think it leads to deep listening.
What we learned from the interviews is that the care partners felt empowered by being included in the intervention and the care partners really valued the collaborative nature of the storytelling project and especially that the intervention was so different than the previous therapy experiences that they had had because it was person-centered, it was fun, and they got to share their story with other people in their lives. So, then the three of us, Harold, Katie, and I wrote our first article about Aphasia-Friendly Reading and it's published in Aphasiology and the title is, “I wasn't just sitting there”: Empowering care partners through the Aphasia-Friendly Reading Approach. And then in 2023, the three of us went to Boston and presented it at ASHA.
Katie Strong: Thanks for sharing that, Erin. You know, I think the experience of the care partners saying that therapy was fun important to note. And Harold has mentioned that Rosella thought it was fun, and the other participants thought it was fun. And I guess I just want to bring home that hard work can, can still be fun or therapy can be fun. And especially when it comes from the person with aphasia and their care partners. The topics are generated by the client and care partner. They're sharing things that are really important to them that have happened in their past. I love it.
Erin O’Bryan: And one of the care partners even said that they learned better when it was fun.
Katie Strong: I love it. Fantastic. Erin, I was wondering if you could share some tips for clinicians who might be listening that are thinking about how they might be able to incorporate this Aphasia-Friendly Reading Approach into their practice.
Erin O’Bryan: Thank you for asking, Katie. So, in the past year, you and I have been talking about how we want to make it as easy as possible for clinicians to use our storytelling approaches in regular clinical settings, outside of research. And we really want clinicians to realize that it takes almost no time to prep for a person-centered storytelling session. You just have to go into the session ready to actively listen to what the person with aphasia wants to say. I love the acronym PULSE that you and Barbara Shadden wrote about in your paper, The Power of Story and Identity Renegotiation. And then in our paper, we reviewed PULSE again. So just for our listeners, I'm going to go through it real quickly because I think these are great things for clinicians to keep in mind.
The P in pulse is for partnerships, partnering with the person with aphasia. And in the case of Aphasia-Friendly Reading, the clinician partnering with the care partner also.
The U in pulse is for uniqueness. So, the clinician should be prepared to help the person with aphasia tell their unique story.
The L is for listening. The clinician needs to learn how to really listen.
And S is for supporting the person with aphasia in telling their stories. For example, using communication ramps in Supported Conversation for Adults with Aphasia strategies to support communication.
And then finally, the E impulse is for explore. So as a clinician, be ready to go off-road with your client to explore the story that they want to share. And as a clinician, know that it's okay, even it's great for you to do that.
Katie Strong: I love that. I love that. Erin, I guess that leads us into sharing that we do have a paper that came out in 2024 called Person Centered Stories on the Main Stage in Intervention, which highlights examples from three different story projects, including Aphasia-Friendly Reading. So, we'll link that to the show notes as well.
Erin O’Bryan: Yes, and this year at ASHA 2024, Katie, you and I are going to be also giving a talk about this work called Elevating Person-Centered Stories to the Main Stage in Aphasia Intervention. And we are looking forward to presenting this work hopefully to an audience of clinicians.
Katie Strong: Yes, yes, we hope to see folks in Seattle for sure. Well, I want to bring back both Harold and Erin into this conversation. And I think one of the things that I've recognized through this collaboration that you and Harold and Rosella and later on I got to be a part of is that we really are all better together. And I was hoping each of you could take a moment to share how this work has changed your thinking or maybe some ideas about sharing with others about what you've learned from this collaboration.
Harold Regier: Well, for me, one of the things that I think I really learned from this is that we care partners need the therapist and the therapist needs us care partners. And there are more ways in which we can work together than perhaps sometimes we have done it when we have just been sitting there. And so, I really, I'm so pleased to be able to feel that that we care partners are more involved or can be more involved in the whole therapy process than what so often we have been. But I think that one of the things that the therapist needs to help us understand is when is it appropriate for us to be part of the process and when it is not appropriate for us to be part of the part process. It's not a matter of us being there all the time and sometimes being in the way. So, I think that kind of very frank candid conversation with us would help us understand that. And I certainly understood better that that the role of the care partner in terms of helping the person with aphasia be able to communicate better is very different from the role of the therapist.
I never tried to be the person who was the teacher, trying to let Rosella know how she should do better and how we might be able to improve our reading. We just did it and it came out the way it came out. But then when I see how Erin was working with other clients and the persons with aphasia and the family members together identified the stories that they were interested in putting together, and the therapist helped put that together into words that they then could repeat or share together and in a storyline, that that is the place where I think we can be so much more collaborative with the therapist in a process like that. So I just always was telling myself, “Don't be a therapist. Don't be a teacher. Don't try to say, well, you can do better than that. Just simply do what is natural.” And then I wish that the therapist would take the other role and really work hard to help the person with aphasia do better with their reading and their performance. We didn't do our reading for production. We did it for fun, as you were saying earlier. And then we did it because we wanted to share that fun and that experience with others. And that was so very, very satisfying for us. Those are some of the thoughts that have come to me in terms of the relationship between therapist and care partner.
Katie Strong: Thanks Harold. Yeah, Erin, any thoughts?
Erin O’Bryan: I've learned so much from this collaboration. From Harold, I learned what a difference it makes when a care partner puts so much time and thought into supporting their partner with aphasia's communication and her quality of life. Also I've seen how much Harold has done and I hope that me you know as a busy professor stopping and taking the time to tell him that I saw so much value in what he was doing at home with Rosella reading those videos together. I hope that this helped him realize that it was valuable to share. And I'm thrilled to say that Harold has been going around the state of Kansas giving talks about aphasia at colleges and senior living facilities. He's doing so much and I love to see that. And from collaborating with you, Katie, I've learned the importance of making the story sharing a really beautiful celebration honoring the person with aphasia and you know bringing special things like favorite food treats, beverages, flowers, and especially inviting the people that are important to the person with aphasia. We've now had five or six story sharing celebrations. It seems like everyone is more beautiful than the last. I've learned so much about that. And I've also learned that qualitative research helps me capture the meaningfulness of these projects and the meaningfulness as we're working with people with aphasia and that this research can be so fun and rewarding.
Katie Strong: I love that. I love that. As I was listening to you, Erin, respond to Harold, it just sounds like together we can validate one another. The work that you're doing, you were doing with Rosella, Harold is very validating and then Erin bringing it into the lab to test it out and it's all beautiful. It's, it really is. And I guess as I reflect on this thought about what I've learned is to reiterate, Erin, something you said, that listening to family members or care partners and the ideas that they have to engage their loved ones in communication activities are so powerful and taking that time even if you are busy to listen and think and validate and see how that connects to the existing evidence-based literature. I think is really powerful. But I also think that there's this collaboration and the combination of care partners and clinicians and researchers. And of course, the person with aphasia at the center of all of that, making a powerful team to develop innovative methods of storytelling is really one of my big takeaways from all of this.
Erin O’Bryan: Yes, that's wonderful.
Harold Regier: I would like to give kudos to the therapists who worked with Rosella over the many, many years. Ten years of aphasia therapy, four of which were one-on-one, six of which were part of a support therapy group. Those therapists were such relational people, such encouraging people, and also knew the techniques that work in therapy. So, I wanted to say that those years were very, very meaningful, very, very helpful, and helped us with the day-to-day kind of living with hope, with the expectations that things can continue to get better.
Katie Strong: Thank you, Harold. Yeah. Erin, any other thoughts as we wrap this up today?
Erin O’Bryan: Well, I just wanted to say that I would never recommend that all intervention involve the care partner because I understand that it's good for the person with aphasia to get one-on-one time with the clinician. But don't forget that that care partner is often with the person with aphasia almost 24/7 and we may only see them one or two hours a week. So, it's so important that we do more to really educate the care partner about how to acknowledge the competence of the person with aphasia and really how to support their communication. So that's why I really want us to do more with in involving the care partner and in intervention. So, I'll get off my soapbox. Thank you, Katie, for letting us share about this project that I love.
Katie Strong: I'm so delighted that we could have this time together today. Harold, thank you for your generosity and sharing your ideas and Rosella's stories with us and this beautiful work of Aphasia-Friendly Reading and Erin for your work in the lab and bringing it to the clinic.
On behalf of Aphasia Access, thank you for listening. For references and resources mentioned in today's show, please see our show notes. They’re available on our website, www.aphasiaaccess.org. There you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at [email protected]. For Aphasia Access Conversations, I’m Katie Strong. Thanks again for your ongoing support of Aphasia Access.
Contact information for Guests –
Resources
Aphasia Institute’s Introduction to Supported Conversation for Adults with Aphasia (SCA™) eLearning. https://www.aphasia.ca/health-care-providers/education-training/online-options/
Chapey, R., Duchan, J. F., Elman, R. J., Garcia, L. J., Kagan, A., Lyon, J. G., & Simmons-Mackie, N. (2000).Life Participation Approach to Aphasia: A statement of values for the future. The ASHA Leader, 5(3). https://doi.org/10.1044/leader.FTR.05032000.4
Cherney, L. R. (2010). Oral reading for language in aphasia: Impact of aphasia severity oncross-modal outcomes in chronic nonfluent aphasia. Seminars in Speech and Language, 31, 42–51. https://doi.org/10.1055/s-0029-1244952
Cherney, L. Babbitt, E., Oldani, J., & Semik, P. (2005). Efficacy of repeated choral reading for individuals with chronic nonfluent aphasia. [Clinical Aphasiology Paper] http://aphasiology.pitt.edu/1548/
Kaye, R., & Cherney, L. R. (2016). Script templates: A practical approach to script training in aphasia. Topics in Language Disorders, 36(2), 136–153. https://doi.org/10.1097/2FTLD.0000000000000086
O’Bryan, E. L., Regier, H. R., & Strong, K. A. (2023). “I wasn’t just sitting there”: Empowering care partners through the Aphasia-Friendly Reading approach. Aphasiology. https://doi.org/10.1080/02687038.2023.2272956
O’Bryan, E. L., & Strong, K. A. (2024). Person-centered stories on the main stage in intervention: Case examples from the My Story Project, Aphasia! This Is Our World, and Aphasia-Friendly Reading. Perspectives of the ASHA Special Interest Groups. https://pubs.asha.org/doi/10.1044/2024_PERSP-23-00272
Regier, H. (2021). A Decade of Aphasia Therapy: Aphasia-Friendly Reading: A Technique for Oral Communication. Independently published Available on Amazon
Strong, K. A. & Shadden, B. B. (2020). Stories at the Heart of Life Participation: Both the Telling and Listening Matter. Chapter 5. In A. L. Holland & R. J. Elman (Eds.) Neurogenic communication disorders and the Life Participation Approach: The social imperative in supporting individuals and families (pp. 105-130) Plural Publishing.
Strong, K. A & Shadden, B. B. (2020). The power of story in identity renegotiation: Clinical approaches to supporting persons living with aphasia. ASHA Perspectives, SIG 2, 5, 371-383. https://pubs.asha.org/doi/pdf/10.1044/2019_PERSP-19-00145
Youmans, G., Holland, A., Munoz, M. L., & Bourgeois, M. (2005). Script training and automaticity in two individuals with aphasia. Aphasiology, 19(3/4/5), 435–450. https://doi.org/10.1080/02687030444000877
Interviewer info
Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic conditions. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer.
In this episode, Lyssa Rome interviews Elissa Larkin about her work to increase communication access within her hospital system via communication partner training programs and her dual role as a speech-language pathologist and bioethicist.
Guest info
Elissa Larkin, M.S., CCC-SLP, HEC-C is a Bioethicist and Research Speech-Language Pathologist at the Center for Aphasia Research and Treatment at Shirley Ryan AbilityLab. Elissa earned her Master of Science in Communication Disorders with bilingual certification (Spanish) at Arizona State University and completed advanced training in bioethics at Northwestern Medicine Center for Bioethics and Medical Humanities, subsequently earning national certification as a Healthcare Ethics Consultant. Elissa’s areas of professional focus include applications of ethical frameworks to promote patient rights and shared-decision making in rehabilitation practice, Life Participation Approach to Aphasia-centered research and treatment, and interprofessional education models to increase communication access and equity for all patients. Elissa received the 2023 American Speech-Language-Hearing Association Louis M. DiCarlo Award for Recent Clinical Achievement for her work in communication access education and advocacy.
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In today’s episode you will:
Edited Transcript
Lyssa Rome
Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech-language pathologist on staff at the Aphasia Center of California, and I see clients with aphasia and other neurogenic communication disorders in my LPAA-focused private practice. I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Elissa Larkin.
Elissa is a bioethicist, certified healthcare bioethics consultant, and research speech language pathologist at the Center for Aphasia Research and Treatment at Shirley Ryan AbilityLab. She's also certified as a bilingual English/Spanish SLP. Her areas of professional focus include applications of ethical frameworks to promote patient rights and shared decision-making in rehabilitation practice, Life Participation Approach to Aphasia-centered research and treatment, and interprofessional education models to increase communication access and equity for all patients. Elissa received the 2023 American Speech Language Hearing Association Louis M. DeCarlo award for recent clinical achievement for her work in communication access education and advocacy.
Elissa, I am so glad to be talking to you today. I'm really excited for this conversation.
Elissa Larkin
Thank you so much. Lyssa, I'm very excited too.
Lyssa Rome
I thought we could start by having you introduce yourself a little bit more.
Elissa Larkin
Okay, sure, as you said, my name is Elissa Larkin. My pronouns are she/her/hers. In terms of positionality, I am a white, cisgender, middle aged woman, and before we really jump in, I also want to acknowledge and describe the context I work in—as a very resourced research and rehabilitation hospital. I want to explicitly recognize that because a number of things I'll share were made possible by very generous mentors and institutional resources that I know are unique and not necessarily available everywhere. I'll try to offer examples from my experiences, and really hope there will be things people can pick and choose pieces from that may fit where they practice.
Lyssa Rome
Yeah, and having spoken with you about this, I think that there are things that clinicians in a variety of contexts will be able to take away. So you have this really interesting background in bioethics. It's unusual for people in our field, and I'm curious, how did you get there? Why did you decide to do that bioethics training, and how has that informed your practice?
Elissa Larkin
Thank you. What a wonderful question to start with, and I'm grateful for the way that path unfolded. In my clinical practice, as an SLP, I think it was often issues of justice that motivated me the most, alongside my patients and families. We have a very active and engaged ethics department within our hospital, and so I got to partner with the ethicists at times on cases where there were issues that arose for some of my patients with communication disabilities. I was fascinated by how the process worked and how much patient rights and preferences were really centered very genuinely.
At some point, I had the opportunity to do more training in a program that was designed for practicing clinicians—it was like, part time, over two years—arose, and I jumped at it. It was a wonderful grounding, kind of a broad overview and foundation of bioethics, principles and philosophies, theories, frameworks. And I felt like with each reading and class, honestly, Lyssa, I just there would be aha moments where it was like, ”Oh, there's a name for that thing that I've been experiencing.” Or, “Oh, this method of approaching a really complex, gray situation really helps make sense of it and gives you more of a place to start.” I think sometimes in clinical practice, we can feel really swept up in all of these complex things happening. And we want to do something, but it's hard to know where to start or how to even make sense of everything that's going on. I just felt like the clinically oriented ethics training program really helped me with that. And then the more I studied it, the more I wanted to do something with it.
It happened that when I finished the program, the ethics department within my hospital had someone retire from a part-time position, and so I threw my hat in the ring for that, and they hired me for the part time role. They took me on, basically, and provided me kind with an on-the-job fellowship for more of the clinical bioethics practice. And it's just been a really meaningful learning process.
Another piece I think that is important for me is that the program, the Donnelly ethics program here, was founded in 1995 by a physical medicine and rehab physician who's also a disability rights advocate. That very much informed the shape of the program and just how it was embedded in our hospital system, how it operates, and certainly how I was then trained. And so it just really aligned with my own philosophy as an SLP, and there's just been a lot of dovetailing.
As I said, the bioethicists on the team before I joined, none of them were speech pathologists. One has a legal background. There was a neuropsychologist, and then a PhD bioethicist, more academically trained. But they would partner with primary SLPs when the patient needed communication accommodations. Once I came onto the team, there was also a lot of openness. They really embraced my expertise, and I've gotten to work on most of the cases where a patient needs communication accommodations. And they've also really embraced learning these strategies themselves, implementing them. None of my colleagues go to consults now without a clipboard and a Sharpie.
Lyssa Rome
Wow, which is just living the dream.
Elissa Larkin
Yeah, they're doing it. You know, they're really embracing it.
Lyssa Rome
You've talked just now about how communication access is a part of the ethics work that you do, right? And it's part of what you think about as a bioethicist. And so I'm wondering how that ties into the work that you've done in trying to broaden access within your hospital system, and maybe you could talk a little bit about what you have done to broaden that access?
Elissa Larkin
Sure. Yeah, so communication partner training has become really central to my practice, and this is a place where I think mentorship is a really important part of my story. I work in the Center for Aphasia Research and Treatment. Leora Cherney is the director of the center, and she has been a mentor to me since before I joined the center, when I was a full-time clinician on the floor. She's someone who makes herself very available to SLPs throughout the organization, and so she provided guidance and support when I was learning about communication partner training and wanting to figure out a way to address things more broadly, as you said.
I think for a long time we have been giving our colleagues fish. You know, it's like we share a patient who has communication needs, and they ask us for advice and modeling to accommodate that one patient's needs. And we do that, and it helps that one patient.
And at some point I realized I wanted to teach people to fish. And so I started thinking about how to do that, and I sort of had this incremental from sort of like mini shoestring projects with a colleague on the floor. We both went to a Supported Communication for Adults with Aphasia, presentation that our colleague, Edie Babbitt, also a generous mentor, gave for our institution as a course. She had gone to the Aphasia Institute and done the Train the Trainer certification. And my colleague and I walked out of there and said, we have to do something like this on the floor. We have to do it more than how we're just doing it in a mini way, within the one hour we get for family education before someone discharges. We need to do something more dedicated.
So my colleague Julie Carpenter and I developed this one-hour training for patients and their care partners, family, friends, whoever could come. We offered a full hour just focused on that, and that sort of began my process. Once we had success with that. We could, I mean, you could see the care partners learning to fish. I wanted to learn more. I wanted to learn how to do it better. I wanted to learn what was behind these trainings in theory. And so I asked for support from the hospital to also go and do the Train the Trainer certification at the Aphasia Institute. And they said, “Yes, as long as in return, we'll ask you to also do a webinar for us.”
My grandmother was a career middle school teacher for over 30 years. She always said, “The best way to learn something is to teach someone else.” So I think the combination of preparing and delivering that webinar and going to the Aphasia Institute and learning just what I was looking for: the theory that was behind things, what they've learned over time, really from experts, and learning their system, helped really grow my knowledge and skills and sort of overall mindset of how to tackle this problem, this big problem, and maybe a bigger way take a little bigger chip out of it.
One of the things that in that Train the Trainer experience that really struck me was they challenged all of us to think about the communication environments where we practice and the systems they're in, and look for opportunities to embed communication partner training. And for me, when I did that, I thought about our clinical ladders program, or professional development structure. You know that clinicians kind of enroll in and take these different electives to grow their skills, but it's in this sort of structured, supported way within the hospital.
We already had a champion model, which is an implementation science model, a way of spreading knowledge and skills more broadly, sort of clinician-to-clinician. And I thought, what if we could have a champion program for communication strategies or communication accommodations? And I started working on that. And again, I went to Leora, who was very supportive and helped me think through how to structure it, and we pitched it as a pilot. In 2017 Edie Babbitt also mentored me in that program. We sort of thought through a curriculum of, how could I try to take what I learned from the smaller communication trainings I'd done and do it in a broader way and over more time.
So it's a year-long program for rehabilitation clinicians, and it started with four clinicians, a small group, but we had all allied health disciplines, represented SLPs, OT, PT, and all levels of care within our organization. We had two inpatient clinicians, an outpatient clinician, and someone from our day rehab program.
Throughout the pilot, the things that I really tried to center in the curriculum were practice—hands-on practice—opportunities to reflect: How did that go? What might you do differently? You know, we video record it, watched video recordings, discussed. And then also, opportunities for clinicians to apply it in their own practice and reflect on that too.
So, you know, the idea was kind of, I did the initial Supported Conversation for Adults with Aphasia training in the beginning, and that was sort of foundational. And then each time there were two months or so in between meetings, and their job was to take what they learned in the meeting and go put it in a practice with their patients. And they kept a log of just like once every couple of weeks, one example where they used communication accommodations with patients. And how did it go? What was the clinical context? What did you do? How'd it go? And that was the fuel for the discussion to start the next meeting off, we'd all come back and share. I borrowed a phrase from a community member with aphasia who runs his own community group. He always starts with thorns and roses. And so that's what we would do in Communication Champions. You know, “What's been challenging and what's going well?” And then also we would problem solve together. If someone brought a challenge and said, “I could really use help,” we would talk about it.
For me, something that was really rich about the experience was I learned a lot too, of course, especially from hearing how clinicians in other disciplines would tackle the problem. Once they have foundational knowledge, sometimes they approach something differently than I would as an SLP, in a way that I thought, “Oh, yeah, I think that'll work better. That totally makes sense.”
We all learned a lot through that part of the process. So I think the program gives that foundational knowledge. They put it into practice. Halfway through, their job changes to focus on mentoring others. So they do a case study presentation to all their teammates, and kind of launch themselves as a Communication Champion. So they're presenting about a patient, hopefully the whole team kind of knows, so it's really relevant and engaging, is the idea. And they emphasize the communication accommodations they used in clinical practice and the impact that it had. And then they tell their teammates, “I'm in this program, I'm learning these skills, and I can be a resource for you.”
And then the program really ends in helping the trainees get to a point where they're then thinking more broadly. We go from the examples of communication accommodations for patients with aphasia to other diagnoses, because people are in the program from all over the organization, we're working with very different patient populations, sometimes so accommodations for a person with locked in syndrome, accommodations for someone on a vent, all the different varieties, cognitive-communication accommodations, and then they think about the communication environment where they practice.
There's a wonderful article by Robin O'Halloran and colleagues from 2012. It's a metasynthesis of surveys done of various stakeholders, including patients with aphasia in an acute care setting and providers, as well as family members I believe, and collecting their input on communication facilitators and barriers. And then, you know, they came up with these six different categories. And so we read the article, and then the champions look at the environment where they work, because we know it can vary a lot across just one organization, which says a lot about how varied our patients' experiences can be, as well. And they break it down, what are the facilitators in my environment? What are barriers? And then we talk about it—is there any low hanging fruit? Are there any barriers that you could address that would be pretty easy to remedy, and are there any that would be really impactful to address?
And some of those trainees actually have gone on to do a project to address some of those barriers. We added a Communication Champions level two, where once you complete the program, if somebody wants to do basically an independent project, they can request support. And, you know, I provide mentorship if needed, I just support them however I can. And there have been some really neat things that have come out of that, too.
Lyssa Rome
It's amazing. It sounds like you've developed a really rich program, and I'm curious about how it's been received, what kind of feedback you've gotten from the people that you've trained in the hospital.
Elissa Larkin
Thank you. Yeah, every cohort I end with direct feedback from the trainees about the program, all aspects: “What went well? What could be better? Anything else we should add?” And one thing that consistently people have said is that the practice is really valuable. We have actually partnered with community members with aphasia. I've neglected to mention this is all over Zoom at this point, which makes it accessible for people from all parts of the hospital and for our community members.
So the practice, rather than role plays with each other, our community members with aphasia, Zoom in and have conversations and give direct feedback. “You did a good job speaking slowly.” “Could you write more for me?” Things like that. And the clinicians have said that is not only really helpful, it helps them build confidence, and it feels really meaningful. And the community members have been so generous with their time, and they have also said they feel like not only is it fun for them, they also find it meaningful to feel like they're training clinicians who are going to work with other people with communication disabilities and maybe make things more accessible for them. So that's been, I think, a really important part of the program, and I'm so thankful that our community members are always up for being a part of it and giving their time that way and expertise for that matter.
Lyssa Rome
What about other examples of how this has played out for the people who you've trained?
Elissa Larkin
Yeah, I have to say, clinicians have shared some really powerful examples of what this has changed in their practice, and some of them might seem kind of simple like I had an occupational therapist inpatient who worked on a primarily neuro rehab unit, mainly with stroke survivors. She told me about this bathing session that she had with a patient with aphasia, and she was so excited to show me all the communication supports that she had created ahead of time, to walk the patient through what to expect, what the steps were, what her expectations were, to leave room for questions, all ahead of time. And then she said they had this extremely successful session.
I said, “What made it so successful? What did that look like for you?” And she said, “Well, the patient did what I knew she could do. The communication didn't get in the way. It felt really accurate. And it was an important piece of her getting ready to go home, which was also really important to this individual. And so that, to me, was really meaningful.”
I've actually had some prosthetist orthotists join the program as well. So, you know, they're making braces for patients and other kinds of things, and they have had some great stories about just really getting it right. One clinician said that he was working with this patient with aphasia, and he was writing all these options down, and he brought all these examples to show her, and he said she was really particular. She was a very put-together person, and she ended up choosing this, like, hot pink brace. And when he confirmed, like, “This is what you want?” She was just all lit up like, “Yes, this is exactly what I want!” You know, that is meaningful in his practice. He was so proud and excited to tell me that.
And actually, a couple of other people from the P&O department did the program last year, and this year, they're working on making the documents that they use in their department more accessible. So they've taken this on. Their manager totally is supporting it, and I'm kind of just supporting them. So to me, those are the signs that make me feel really hopeful, that the champion part of it is working. You know, I wouldn't even know that those barriers are there. That's not my field of practice, and for them to not only identify these issues, but start to feel like they can address them and improve things for their patients, and then have examples where it works. It's just been really exciting and rewarding.
Lyssa Rome
It's amazing to think about, sort of the ripples out from the work that you're doing within the hospital, and then also, ultimately, to patients and people who are in very vulnerable… I mean, you give the OT example choosing a brace, those experiences are so central for patients, and to be able to have such a broad impact by training people from so many different departments is really amazing.
Elissa Larkin
Thank you. And you know, just listening to how you put that, it made me think about again, some of the ethics terms that now bubble up for me are dignity. There was so much dignity preserved there and even uplifted for that patient during her bathing session. The personhood. The autonomy. And getting your brace exactly how you want it—if you're going to wear this every day, that's a big deal. I think, to be seen, to feel like you can advocate for yourself and your own care, because you're working with a provider who knows how to accommodate your needs.
I think in our field, there have been leaders who have planted these seeds of talking about communication ramps, really looking at the parallels between physical accommodations and communication accommodations. That's another thing in the Communication Champions program: Clinicians have said, “That really makes sense.”
A PT shared—she practiced in day rehab—and she said, “One day, it just dawned on me that the paper and the marker that is my patient's least restrictive device for communication, right? I would never ask them to walk without their walker. Why am I asking them to have a conversation with me without their tools?” And those are the times where it feels like, “Okay!”
I love that word ripples. I feel like there's a lot of empowerment happening in all directions. That's my hope, that the clinicians feel empowered, that when patients are interacting with providers who have this knowledge and these skills, and it's that the patients feel empowered too. And we know that it's complex. It requires ongoing adaptation. And so I hope that in talking about communication partnership, when clinicians are using the knowledge they have and they're trying, patients can partner with them. That's what we want. That's how we want it to be. You know, we're working for them. And we're working together, hopefully.
Lyssa Rome
Well, as you're describing that, it becomes so clear to me how ethics, how justice, and how access, are so deeply intertwined. So it's really clear that in both the ethics programs, and your work as a bioethicist in your hospital system, and the Communication Champions program, you're implementing those ideas, those sort of foundational values that I also hope are central to my practice. I mean, I think it's definitely something that I aspire to. And it's really impressive to me how you've put them into practice.
Elissa Larkin
Oh, thank you. I aspire to them too. Every day. All of this is nothing if not humbling, which is where we want to operate from anyway. Yeah, I'm thinking of one more little story. It might make me emotional to talk about it.
Lyssa Rome
Take your time.
Elissa Larkin
Yeah, thank you. It's a happy story. It's just… We have a program in our hospital for patients with locked-in syndrome, who’ve had brain stem strokes and the majority of whom are totally dependent communicators, mainly communicating with their eye movements, right? And I got to meet a patient with locked-in syndrome somewhat recently, who had a complex situation where he hadn't appointed a power of attorney for finances, and at that point he really needed someone to be able to help with those things.
We were asked to do a capacity assessment to see if he could appoint someone. Normally, we don't actually do financial power of attorney, but this was a disability rights issue. It was like, if we can't do it here, then he's not going to probably have another opportunity where the resources are there to complete it. So I partnered with a neuropsychologist who hadn't worked with people with locked-in syndrome before, but she was very familiar with the assessment process, and we were really careful about how we planned the questions and the structure and the flow to give this person his best shot at demonstrating capacity.
In the beginning, I was doing all of the communication with him and the spelling and the choices. But the neuropsychologist—we met with him three times—and by the third time, she held the board and was asking questions directly and helping spell things out. She actually, at times, I think, had a better angle for his eye movements. And it was just, he was just right on. They were in sync, and he totally demonstrated capacity. He indicated who he wanted, and had very clear rationale.
And so when we told him it was clear and he was going to be able to complete this and our team would help him do this and put it in place, he just let out the biggest sigh. And you know, in terms of communication that said so much. You can imagine all the other ways that could have gone, and what an impact that would have on that individual's life, who absolutely deserves to be able to choose who they want to help was such an important thing. And you know, we thanked him for working so hard to communicate with us and being so patient as we learned his communication system. And then he also had a smile, like he was able to just do this spontaneous smile.
You know, those two pieces of communication were just really meaningful. And after a debriefing with my colleague, she said she felt like she learned so much. She feels empowered to use communication accommodations, to reach out if she's working with someone who has different needs and she isn't sure. And that's how I want it to be. That's what I hope for. I hope everybody in the hospital, at some point, has access to training like this. Our security guards, they totally want to be able to do the same thing, right? Admissions folks. Everybody, wants to get to know our patients, to communicate with them in an equitable way. And I do think that having access to training is the answer, and having it tailored.
Lyssa Rome
What a moving story and how fulfilling that must be—both for the clinicians in other disciplines and SLPs too, I guess, who have learned how to provide access. It makes me wonder, as you think about what you've learned from having done this work, what would you like listeners to take away from having heard about the work that you've been doing?
Elissa Larkin
Well, my first thought is you're probably already doing more than you are giving yourself credit for. I think advocacy is kind of built into our practice in some beautiful ways. And I also think everyone should maybe do that same exercise that the Aphasia Institute folks suggested: thinking about the communication environment where we work, and thinking about the systems that are in place, and where there might be opportunities to offer our expertise.
I think that there have been a number of times where colleagues of mine have been so receptive. And, you know, I think there's a lot of trust already between us, the folks that we work with. And so I think if we can find opportunities to offer communication, accommodation, mentorship.
I also think the other piece that I've learned that is so important is—and this is in literature, too, I just have found it to be very true in practice—is tailoring. I have done communication partner training for our campus security, campus safety team. And I used very different examples for them. I talked to them first about when this comes up, what it looks like. It's got to be relatable. And I think that part of the brilliance of the SCA model and other models too, that include role play, is giving people a chance to put ourselves in the shoes of someone who has a communication disability makes all the difference. Then you get it, “Oh, that was really hard. And if I can make that easier for someone, I want to.” And then you got them. Then they're listening. Then they want those strategies. They want to learn the accommodations.
So I think offering our expertise, tailoring, and I think also, thinking about what scope feels reasonable. I talked about teaching people to fish. I also think giving people fish is really important—don't get me wrong.
I worked with a chaplain team also, and one of the chaplains said to me… I asked him, “Do you have any advice if colleagues of mine want to provide communication training to their spiritual care colleagues?” And he said, “You know, I would start with a shared patient and one chaplain, and then get that person to convince their colleagues to listen. And, you know, maybe you can give them some certain tools, or you could just even meet with them.” But I think all those small steps of bridge-building can be really impactful.
I've been thinking a lot about just disability rights history, and I think communication access is at a certain point in its evolution in terms of awareness. And I think all of us can contribute to raising that. It's going to take time and just a whole lot of us chipping away as we can, growing, learning, along with people with lived experiences, and advocating together.
Lyssa Rome
Well I hate to stop the conversation, but that's a really great note to end on. I just really appreciate your sharing these really powerful stories with us, knowing that, I think clinicians in a really broad variety of clinical settings can take some of this and put it into practice so that we can also bring justice and access to the people that we're working with.
Elissa Larkin
Thank you. I agree.
Lyssa Rome
Elissa Larkin, it has been so great to talk with you. Thank you so much for sharing all of this with us.
Elissa Larkin
It's been a pleasure to talk with you, Lyssa. Thank you for the opportunity.
Lyssa Rome
And thanks also to our listeners. For the references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at [email protected]. Thanks again for your ongoing support of Aphasia Access. For Aphasia Access Conversations. I'm Lyssa Rome.
Welcome to the Aphasia Access, Aphasia Conversations Podcast. I'm Ellen Bernstein Ellis, Director Emeritus of 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.
Brief topic intro
I'm today's host for an episode that will feature Dr Felicity Bright. We'll discuss her research looking at factors impacting wellbeing, engagement and hope.
Guest bio
Felicity Bright is a registered speech language therapist and associate professor in rehabilitation at Auckland University of Technology in Aotearoa, New Zealand. Her research examines cultures of care, and in particular, how the cultures and practices in rehabilitation respond to the needs and priorities of patients and those who support them. She has a particular interest in stroke and in the needs and experiences of those with communication impairment through her work, Felicity seeks to support practitioners services and rehabilitation organizations and to provide better person centered care.
Listener Take-aways
In today’s episode you will:
Show notes edited for conciseness
Ellen Bernstein-Ellis Felicity, welcome to our show. Thank you for agreeing to be our guest today.
Felicity Bright Thank you for having me. It's great to be here.
Ellen Bernstein-Ellis Welcome Felicity. We’re going to start today with an icebreaker question. The one you selected for today is, “Do you have a favorite book or movie about aphasia?
Felicity Bright It was hard to choose one. Actually, I was just looking at my bookshelf and I went back to myself as a fairly new speech and language therapist quite a few years ago now. One that was really transformative for my practice was Talking about Aphasia by Suzie Parr and Sally Bing. It's a classic, but it was a beautifully written book that really opened my eyes to the experiences of people with aphasia beyond all the technical work that we'd learned in university and so on, but it brought to life the humanity of the people who have aphasia, and really helped me rethink why I do what I do, and what the real impacts of aphasia can be for people.
Ellen Bernstein-Ellis Yes, that's a beautiful book that brings that all to the forefront. And I want you to say the title and author again, in case I spoke over you a moment ago,
Felicity Bright The book is Talking about Aphasia and the authors are Susie Parr, Sally Bing and Sue Gilpin with Chris Ireland,
Ellen Bernstein-Ellis We’ll put that (i.e. citation) into the reference list on our speaker notes. So thank you. And as we start today's interview, I was wondering if you'd like to share your path from clinician to researcher, because we've had several guests who have started in clinical work and then came to their doctoral work and research a little bit later. So, I'd love it if you could share that with our listeners.
Felicity Bright Sure. So I worked as a speech and language therapist in New Zealand. We are speech language therapists. I worked in a range of neurological settings, from acute stroke neurosurgery, did a little bit of ICU, did some rehab in inpatient services and in community, and really enjoyed that work, but I'd always had a long standing interest in research. I was a bit of a geek, you know, When I was in training, that was, that was me, I was the geek. And so I'd always kind of expected at some point I would go down the research track.
It was prompted after I had my first baby, and my work required me to either go back full time or to not work. And so at that point, I chose to not go back to work full time, and a research job came up at Auckland University of Technology, and I'd followed their work for a while. We don't do speech therapy here, it was rehabilitation research, and I was offered an opportunity to be a research officer doing interventions as part of a randomized control trial with people with traumatic brain injury.
And so that kind of gave me the space to bring together some clinical work, but also some research work. It gave me the opportunity to do my Masters alongside this with my fees paid. So that was fantastic. And it really solidified for me that I was quite happy and enjoyed being in that kind of clinical research space. And so I've been in the university now for 15, nearly 16 years
Ellen Bernstein-Ellis Wow, that's a great story. So now you have a 15 year old, right?
Felicity Bright I have a 16 year old who is now taller than I am.
Ellen Bernstein-Ellis Well, thank you for sharing that. I'm just really looking forward to a discussion around some, what I consider critical but hard to define and challenging to research topics. like engagement, wellbeing and hope. I want to start by asking, how did you end up researching a topic like engagement or hope? You did say during our planning meeting that you research things that you're bad at, which made me laugh. So that sounds like some courageous and reflective exploration. So maybe talk a little more about that.
Felicity Bright Yeah, I am a bit of a selfish researcher. I research the things that I find tricky and a little bit hard, because for me, I want to learn how can I do better at this? How can I help my students learn how to be better in these areas? How can I help clinicians not make the mistakes that I’ve made. I guess trying to be a better clinician has been at the heart of a lot of the work that I do. And you know, when I was working full time in clinical practice, I had patients who would stick with me where I just felt I let them down. They had such a short window of rehabilitation access. They were living with stroke for the rest of their lives. They maybe had eight or 12 weeks of speech therapy. There were just times when I really felt I missed the mark for them, when they didn't get the best rehab they could have had.
And it was when I was working in the university in this randomized control trial of goal setting interventions after traumatic brain injury that it started to help me reflect on some of the why I was maybe having some of the challenges I was having.
So in this trial, which was quite prescribed because it's a randomized control trial, I was noticing that patients seem to be engaging with these interventions a lot more than the people who I worked with in clinical practice, and that kind of surprised me a little bit. I also noticed that-- we were using Mark Ylvisaker’s approach to goal setting around what is meaningful identity based goal setting--and people were identifying hopes and goals and dreams that would have left me panicking as a speech and language therapist. What do I do about this?
But it made me realize, actually, I didn't need to panic about that, and there were ways to engage with people about their hopes and dreams that honored those hopes and dreams, that kept them alive. But also, I could see ways that I could work with this. I could bring my speech therapy hat and help people. And so it highlighted to me that maybe the things that I had perceived to be difficult or issues, didn't need to be and there were ways to think about these things differently and ways to work differently to better support people.
So working on this trial, and I did some quite structured reflection around that with some of my colleagues, writing in auto ethnography around this, gave me the opportunity to reflect on these areas, but also highlighted that there was the real opportunity to do more nuanced and more detailed research that would bring to life different ways that we could support people to hold hope, to engage in rehabilitation that is meaningful and that might be able to produce some quite tangible suggestions to support clinicians and to support the people with stroke who we work with.
Ellen Bernstein-Ellis I just want to say that these intangible, some what we call intangible topics that you've tackled, you always seem to end with tangible suggestions, and that's what I have found so inspiring. And we're going to circle back to hope in a few more questions. But, I just want to say, not only has my clinical thinking been informed and inspired by your research topics, but I've also just learned so much from the variety of qualitative methodologies that you've used in your work. I was wondering if you could share how you developed your expertise in qualitative research, maybe even offer some tips to people wanting to develop their own skill set. And okay, maybe I'm being a little selfish interviewer. You just said selfish researcher, but I found this challenging, and I've been trying to dip my toe, or I've fallen in head first, trying to develop my skill set around qualitative research. What's your advice?
Felicity Bright I was really fortunate. I came into research, into a team that had qualitative expertise and that used a variety, but not a wide variety, of different qualitative approaches. And it was a team, and still is a team, that has really high standards for methodological rigor. So to us, it's really important to do research that is robust and rigorous and that anchors back to the underpinning theory and philosophy that underlies each of the approaches that we use.
But I was also really lucky in my research that I had supervisors and bosses who really supported innovation, who didn't tell me, no, this is how we do things, who didn't expect me to come into a study and do it just as they had told me to do. But they created the space for me to explore when I was working as a clinical researcher, but also as a master's and as a PhD student. Really had no issues when I said I'm going to go to the library, and I would just sit in the library and read qualitative textbooks and come back with a completely hair brained idea, but that actually turned into something that was really interesting and meaningful. So the Voice Centered Relational Approach that I've used a number of times came from sitting in the library one afternoon and just reading Feminist Research Methodology books. And I think one of my tips would be read outside speech and language therapy. There's amazing work that is happening, not just in the health disciplines or education spaces, but I love reading health sociology journals. I get notifications of a number of different journal types that alert me to different work.
One of my recent projects I used Applied Tensions Analysis, which I'd never heard of, but I had a notification come across for a paper about domestic violence settings and kind of how services work. That's not in my area of research or clinical expertise, but there was something within that abstract that made me go, oh, there's an idea there that is similar to the ideas that I'm trying to get at in my stroke research. And so reading widely, I use Twitter a lot as a way of, kind of coming up to date with different research. I use trial and error. I've tried things and got them terribly wrong. I tried Grounded Theory for about a year for my Masters, and it was atrocious. But also I found that doing research with people with aphasia pushes you to be innovative. A lot of the methodologies as they are published don't necessarily quite fit with the types of interviews or the types of data that we have, and so for me, that's provided an opportunity to test and do things differently.
Ellen Bernstein-Ellis I mean, that's an inspiring response and encouraging support. So thank you.
During our planning discussion, you also referred me to the Life Thread model and the 2008 article by Ellis Hill, Payne and Ward. What a wonderful article. So thank you for that.
I was particularly taken with its implications for clinical practice and how it might guide us in asking questions in a better way to help us understand the social realities of our clients, to prioritize that. To understand how important the social reality is for our clients. Could you please share with our listeners some of the core concepts of the Life Thread model and how it's informed your work? Because I do see the connection there.
Felicity Bright Yeah, I came across this, Carolyn Alice Hill, who developed it, I think, as part of her PhD, was a collaborator of one of my PhD supervisors, and so Cath put me onto it. But the Life Threads model is about identity. And Carolyn's work was in stroke, and she was kind of talking to how identity changes and develops over time. And the Life Threads model talks to how our lives and our identities are made up of many threads, and those threads, they can change over time. But when there's a traumatic event like a stroke, it can cause some threads to break or be frayed, and that can be really challenging. We know there's a lot of work around aphasia and identity construction and identity loss, that's come around.
But also what we know is that stroke can also prompt people to think about what are the threads that they want to continue post stroke. Maybe there are some threads, I found in my hope research, where people are saying,”I don't want to be that person anymore. That's not something that I value”, and for them, sometimes the stroke could be an opportunity to rethink what are the threads that I now want to bring into my life as I weave this new identity of somebody post stroke, but still continues threads that have come through from before the stroke.
We know from the hope research that I was doing that it was often really hard for people to see these threads. It kind of felt like there was a pre-stroke life and a post-stroke life, and that there was quite a disruption. Those threads were cut. And so for me, it prompted questions about how do our conversations as clinicians help people identify the threads that are important for them to thread through their life. What are the new threads that they want to pick up on?
You know, some of the work I've done, and we will talk about this a bit later on, around life after stroke, has highlighted how actually a lot of the conversations that happen between clinicians focus around things like tasks and activities and doing things, but there isn't necessarily a lot of conversation about identity or about what is meaningful and what do people want to carry through, and how can clinicians support that?
And I would say that if we can kind of tune into the threads that matter to people or that people want to matter in their lives, it gives us a chance to tailor therapy to be much more personalized, more meaningful and more engaging, and I would suggest, probably leads to better outcomes for people. What we know from quite a bit of the research, not just my research, but other work, is that people are often doing this identity work on their own, without support. And we know that it's really hard, because our identities are social and they're relational, and they occur through connection and through communication, all of these things that are disrupted by aphasia, often. And so I think the Life Threads model really prompts us to think how can we as clinicians, support people to engage in conversations about identity, and how can we overtly, really attend to supporting identity within the work that we do.
Ellen Bernstein-Ellis Wow, that's beautiful. And yes, I think there's been, fortunately, a growing understanding of the importance of looking at the lack of support for this identity work with us with our clients, and I can really see how the Life Threads model has played an important role in your thinking and research. I recommend our readers to the article because it has some great examples of how to maybe flex the way you ask questions to help understand the narrative better. So I think it's, a marvelous article,
I just want to take a moment and let our listeners know about the fabulous interview that you did with Michael Biel on the ANCDS podcast where you discussed engagement and ways you might incorporate Goal Attainment Scaling to help our clients establish meaningful goals. I'll put the link to that, along with the citations to all of the work we're discussing today in our show notes.
That also gives me a chance to say I don't have to cover everything today, because he did a really good job on those topics. But at the end of that podcast with Michael, you highlighted what was coming next, and that was your work on wellbeing. You've been exploring, and this is a quote by you, “what does it look like to explicitly attend to holistic, long term wellbeing?”
Can you discuss some of the takeaways from your 2024 article, Psychosocial Well being After Stroke in Aotearoa, New Zealand, a Qualitative Meta-synthesis with your co authors, Ibell-Roberts and Wilson. Maybe we can just start by talking about the term psychosocial wellbeing. That’s an important one to understand, but it can vary depending on one's cultural context. Just to start with that, so yeah, good luck with all of that!
Felicity Bright It's a massive question, and it's funny, I started with the term psychosocial wellbeing, and I really intentionally used the language of psychosocial to kind of move away from thinking about just psychological wellbeing, which tended to be framed more from a mood perspective. And so I really wanted to be attending to some of the emotional, and the social, and the relational elements of wellbeing.
But actually, I've now dropped the psychosocial because what we found is, when we talk to our people with stroke in the community, as part of our research, that term is completely meaningless to them, but the term wellbeing is something that resonates.
Wellbeing is a really, firstly, a really nebulous term, but it's also really multifaceted. And I guess the place we've come to is, we view wellbeing as kind of quite unique to an individual, but it's deeply relational, and it's influenced through connection with people, with their cultures and with their communities, and all of those areas need attention.
Now, in this piece of work that you referred to, Qualitative Metasynthesis, we were looking across the literature in Aotearoa, New Zealand, when we look at all the work that's been done, looking at life after stroke, and living life after stroke, what do people say about wellbeing and that highlighted that there were a number of features.
Now, one thing I want to flag is that within New Zealand, we have an indigenous population, the Māori population of New Zealand, who have been here for centuries before Pakeha came and colonized New Zealand. And one of the things that's been really important in our work is to really make sure that we are upholding the voices of Māori, who are often either not included in research, or are involved in research that is not particularly culturally safe, or where their perspectives are kind of subsumed within the wider perspectives of the dominant Pakeha, or European culture.
And so one of the things we've been really lucky to do with this is to have my colleague BJ Wilson, who was leading the Māori stream, so she engaged with our Māori data and literature uniquely. So we upheld that in its own right. That's context, because I'm going to talk to two different ways of thinking about wellbeing, one that was general from all of the literature and one that was specific to Māori . So when we look across all of the New Zealand literature, including the Māori literature, we kind of saw there were probably four key areas that seemed to matter for wellbeing. Having strong connections with family, with old, pre stroke friends, but also with new friends, people who had also been through stroke and had some similar experiences. The sense of self that was connected, where people had a sense of being connected to who they were before the stroke, who they are now, and have an idea of who do I want to be in the future? And there was a sense of coherence, sense of thread that went between those identities. There was, when they experienced wellbeing, a general sense of stability in the present. So things were okay now. It didn't mean that things were perfect. Some of the literature has suggested that people have to have positive emotions if they're going to have a sense of wellbeing. But actually, this qualitative meta synthesis, and the following qualitative work we've done has suggested, no, life is never 100% positive for any of us, but it's about having a balance of, yes, maybe there are some hard times, but also there are some good times as well. That overall, there's an equilibrium of emotions,
Ellen Bernstein-Ellis Right the duality, like be able to hold the duality
Felicity Bright Absolutely and kind of be okay with it, recognize that each of them has a time and a place. People also, when there was a sense of wellbeing, had a vision for the future, kind of a sense of moving towards that. So, yes, they were okay in the present, but they also had a sense that the present is not my future for the rest of my life. I can see a life that is meaningful and enjoyable, and I'm taking steps towards it.
But when we looked at the literature from Māori, and this was the analysis led by my colleague, Bobby-Jo, it also came through ideas like whanaungatanga and ngā hono. So whanaungatanga talks to the notion of connections, and ngā hono talks to connections and kind of belonging as well. And that was a sense of connection to whānau. So that is to people's wider kinship networks, not just blood relations like a family would be, but to kinship networks who are meaningful to the person. Having a sense of connection and belonging in their community, but also to places of meaning. So not just people, but to places.
We also notice an idea around ko ahau, so being connected to their identity as Māori, to their cultural identity, in a sense that their cultural identity was recognized and was valued and supported by those around them, including healthcare professionals. Ideas of mana and wairua. So mana talks to the inherent standing and value that an individual has. And we all know that in a healthcare context, actually, that can be diminished because you become a patient in the healthcare context. But actually, for wellbeing, having that mana recognized and valued and upheld was really critical. And when one's personhood is understood and respected, that also helped with the sense of wairua, I guess, the spiritual essence of the person.
And finally, was the notion of rangatiratanga, which is about autonomy and control and the ability to make decisions for oneself. We can see that while there were similarities between our Māori and our non-Māori groups, there were also cultural differences. So for wellbeing, for Māori, had wider integrations with their sense of whānau, their family and kinship networks, and for their culture and wellbeing was unique for each whānau within the research.
Ellen Bernstein-Ellis I'd like to take a moment and have you elaborate a little bit more on that concept of the relationship of whānau to wellbeing, and how the whānau may be impacted by the stroke and subsequent aphasia. So often our family and support network does not receive direct attention. And here, you're elevating it quite a bit, so maybe you could speak to that a bit more. This is really top of mind for me, because I just went to a think tank meeting and hearing the stories of the care providers saying, I'm not sure I mattered in this equation of my spouse's health care rehabilitation.It just really struck me to hear that. So please, let's talk a little bit more about those values.
Felicity Bright Yeah, absolutely, for all of the people in our wellbeing research and in the previous hope research and so on that I've done, kind of people's whānau, their family and their social connections were absolutely critical to their recovery. And what came through, when we were looking at Māori experiences, was particularly also the intergenerational aspect, like sometimes within stroke services, we might think about the partner a little bit, not always particularly well. And I'll talk to that in a minute.
But actually, we could also hear within our Māori whānau, kind of the impacts for generations above and generations below, like the disruption to relationships between grandparents and grandchildren, and how the grandparent who may have aphasia, would usually have a really critical role in passing on family knowledge, or passing on Matauranga, kind of Māori cultural knowledge. But actually, because of the way the stroke affected them, they couldn't do that and take that role on, and so that impacted not just on the relationship, but also kind of on the identity and how Māori culture could be passed on through a whānau unit. But we've also heard exactly what you talk about. Our services are focused around the person with stroke rather than their whānau, but our services are also really short term. And so what we can see from the research is that the family and the whānau become the connectors and the supporters. They are the consistent people. They hold, usually, deep knowledge of the person that often the healthcare professional doesn't hold.
And we're doing some work at the moment around communication access in stroke units. And even in the context of really significant aphasia, we're hearing about how whānau, even though they don't know about aphasia, they don't know about communication strategies. But because they know how to read the person, they know their non verbal communication, they are actually really powerful translators, and hold the expertise that, actually, we don't hold as Speech and Language Therapists. But we also know that the whānau are key in helping people access supports outside the healthcare system, and they do a lot of that navigation work that they are left to do because the healthcare system doesn't do it very well. And like you say, that's really challenging when the whānau's well-being is impacted themselves, you know, but that isn't seen consistently, and it isn't acknowledged. They very quickly become the carer, rather than, this is this person's wife and they've been married for 45 years. Or this is this person's husband, and they've got three young children at home. What is this going to mean for their relationship as a couple, for their relationship as parents? And so the families are talking to us about the exhaustion and the grief and the shock and the loss. The relief that the person is alive, but again, the duality, there is relief, but there is also distress from the way that the stroke is impacting. And so we would really be calling for much more focus on everybody's wellbeing in this context, because if the wellbeing of whānau is not there, that impacts also on the wellbeing of the person. And I think we need to be shifting how we think about who is our client, whose needs do we serve, and what is our role in supporting the social and relational context around the person
Ellen Bernstein-Ellis That's beautiful. You really highlighted that role, the role of the whānau. And you also identify, Felicity, some other key contributors to wellbeing, and then how those might really impact our clinical goal setting, and I know that's always such an important aspect of how we think as clinicians. You have to document because we're in a system, which we'll talk about. Maybe you can share some other factors that you identified.
Felicity Bright Yeah, so I would be encouraging people to think about what are all the things that seem to support people's long term wellbeing? And those are things, like the relationships they hold within their family, but also within their social networks and within their work networks and so on, Thinking about the different emotions that people might be experiencing. Thinking about hope and what supports people to hold hope, and what do people hope for. Think about the connections that matter to people, the connections to people. The cultural things that matter for people's wellbeing. The connections to community activities and roles and so on.
And think about the things that matter and are meaningful for individuals that usually fall outside our traditional SMART goals that we use in New Zealand, you know? Is it smart, specific, measurable, achievable, realistic, time bound? What is it? I would be saying our goal should be focusing on what makes a good life for this person.
And I would be encouraging you, if you're a clinician, looking at the goals that you're setting for the person. Where is the good life in those goals? Is that up front and center and documented on the page that everyone can see it? That's something I learned through my goal setting research. That was my first research job, the importance of taking people's words, putting their words on a page, and keeping the words where everybody could see it. So where are the things that support wellbeing and that constitute a good life in our goal setting? Where are they in the interventions that we're doing?
And I would be really encouraging people to reflect on how they are making the links explicit between the therapeutic tasks and the things that really matter to people. Because we know from the engagement work that when people can see the link between what they're doing in therapy and what matters to them in life, it is much more likely to be engaging and is much more likely to support them to persist, even when it's difficult, because they can understand this is why I'm doing this thing.
Ellen Bernstein-Ellis Right? Oh, that's beautiful. That really leads nicely into another 2024 article that you've put out focused on wellbeing. And that's The physical wellbeing is our top priority: Healthcare professionals’ challenges in supporting psychosocial wellbeing and stroke services. That article examines what seems to be a mismatch between knowing as clinicians that wellbeing is important, right, and being able to specifically address it within our clinical context. So, we say that we want to, and we know it's important, but the ability to get there, it's quite challenging. I was wondering if you could highlight some of your findings and key recommendations. And I think one of those actually addresses the graduate curriculum. I think that is really going back to the beginning, right? So, please share some of the wonderful work from that article.
Felicity Bright So the context for this work is, this is part of a bigger program of research I'm doing around wellbeing after stroke. And this isn't specific to people with aphasia, but we do have people with aphasia in the research. This research came from this issue-- we've got decades of literature that says that wellbeing is important. We've got a body of literature that says clinicians know wellbeing is important, but we are persistently not addressing wellbeing, and we've got decades of patient experience data that says this is an unmet need.
So I was really interested in understanding, why have we got this persistent mismatch between what is known what matters and what is done, and so using an approach called institutional ethnography to try and get into the cultures and the structures that contribute to this, the rationale behind that is I didn't want to be creating solutions that were going to be completely unattainable in the healthcare context. And so I wanted to understand what's going on in the structure of the healthcare system, and how might we be able to work with that or push against that, to create different ways of thinking about how we work to deal with this persistent issue.
So this project, this part of the research, we were looking at, why are clinicians not seeming to address wellbeing? And so we interviewed over 30 clinicians, I think, within this research for a whole range of healthcare disciplines. What came through really consistently was everybody wanted to support wellbeing. Everybody thought it was important, but there were a number of factors that made it difficult, and we traced as to why that was so.
Firstly, we can look back to when the person first comes into the service. They come into the emergency department. There's often a code stroke that's called. It's a time of really busy early biomedical focus around investigating the stroke, doing assessments. The first couple of days are about intervening to prevent another stroke or to prevent complications. And dysphagia assessment is a classic in New Zealand. Dysphagia assessment is usually prioritized over communication assessment because it is seen to have particular risks and contribute to particular complications.
And so we've got this really early biomedical focus as people come through the first few days. Then the focus shifts a little bit to assessments and treating impairment in function. And when we were interviewing clinicians, they were talking about wanting to give people the best chance of recovery, and that linked to ideas around neuroplasticity and the importance of early intervention for maximizing neuroplasticity and brain remodeling. There was a real focus on addressing the practicalities like toileting and dressing and what was needed to get people home.
And there was a view often that emotions could wait. We need to do the practicalities first. We can do the other stuff later. This was a time of focusing on helping people survive, get through and get home, and it was in the context of really busy wards. You know, sitting and watching nurses work, they are flat out. They are understaffed, and they have very limited time to be doing these aspects of work. But all of this contributes in this wider healthcare system that in New Zealand, and I suspect internationally, is short staffed, underfunded. We've got more demand than we've got beds. There is a really strong focus on getting people home.
Now that's not inherently bad. A lot of our people that we speak to want to be home. Home is a more healing environment for many people than being in hospital. But when the focus is on getting people home, and that is usually about, is the person physically safe to be home, what can happen is other forms of work and other impacts of stroke can be devalued or be forgotten.
And what we could see is people were doing work to support wellbeing within this, but it was kind of a particular form of wellbeing work. They would acknowledge a person's emotions, if they came up through interactions. They would be responding to the emotional cues that people gave off that they were maybe feeling a bit uncertain or a bit upset. They talked about the importance of listening to the person, but that was often couched in a ‘I can listen for so long, but then I need to get on with my session’, because the assessment, the treatment, the moving people forward wasn't important, and they would look to others to help.
But the problem is, I would say this, this did a really good job of dealing with the tip of the iceberg, the emotions that were on the surface. But if we think back to what I've just said about what matters for wellbeing, relationships, connection, sense of self, hope, those things are not addressed. What we saw was that wellbeing was other to the core work of any individual discipline. That didn't work for anybody. Didn't work for our patients that we spoke to. It didn't work for our clinicians as well, because we could also see the moral injury and the burnout that comes when you can't offer the services that you know people are wanting and needing.
And when we think about what do we do about that? Well, yeah, it's tricky, and I don't have any great answers, but training and education is one thing. So when we think about wellbeing as seen as other to the core business of the disciplines, we need to look at, what is it that we're teaching our students? What are we saying is core work of speech therapy or of physiotherapy or of nursing.
I've got the privilege of chairing the accreditation body for speech therapy in New Zealand, and we are rewriting our accreditation framework at the moment that essentially dictates what programs need to teach. We now have a requirement that programs are teaching about psychosocial wellbeing, and that programs are assessing students on how they're addressing psychosocial wellbeing. We need to look at how pathways for care develop, and where is wellbeing within policies, processes, structures, documentation,
Basically, it's nowhere. But we also need to look structurally, and we can talk a little bit more about structures and organizations and cultures, because I think what this work reflects is a wider issue around the cultures and the organization of care that can make it really challenging for clinicians to work in the ways that they do.
Ellen Bernstein-Ellis Oh my gosh, it's a beautiful, beautiful response. I think my favorite quote, and there were many in that article, but the one that said “people with stroke live with the impacts of a stroke system that is designed around biomedical short term care for a lifelong condition and deserve services that support them to thrive, not just survive.”
I think it's what we need to bring back into the curriculum for our students to understand. And all of this ties into the importance of understanding how cultures and organizations, like you just said, of care, might impact the therapy we provide to our clients. Why do cultures and organizations of care matter? You're alluding to that. I think we've just started to reflect on that.
Felicity Bright Yeah, I've often felt there's a real risk with the research that I do that we could end up pointing the finger at clinicians of not doing things as well as they could or as well as they should. But actually, we need to understand why is this? Why does it make sense for clinicians to prioritize dysphagia over communication? Why does it make sense to prioritize getting people home, over spending the time on addressing their wider wellbeing?
And I've been really lucky to work with Deb Hersh and Stacey Attrill, we did a piece of work that looked at this in the context of how speech therapists enacted therapeutic relationships. And we started by delving into why do people work in the way that they do? We started to see the cultural elements. So the needs, for instance, your allegiances to colleagues, to be a good team player, to maintain your legitimacy. And particularly for speech therapists, who often have a slightly tenuous role in stroke teams. Physios and OTs are important, but speech therapists often have to kind of fight to kind of have their voices heard, and so that can lead to speechies behaving in particular ways.
We can also see how cultures of safety impact on what people prioritize. So Abby Foster has done some beautiful work around the cultures of aphasia care and acute care, and highlighting that actually the priority for physical safety and managing dysphagia risk is privileged over the culture of or a need to think about what is the risk associated with communication and poor communication and people not having communication access.
If we understand why people work as they do, and if we understand how the cultures and the structures work, then we can start to unpack them and think about what are the ways that we might be able to do things differently. You know, these cultural factors are very real, and none of them are inherently wrong, like it's not a bad thing that we're trying to prevent people getting aspiration pneumonia. That's really, really important, but we need to understand how these things shape practice and the unintended consequences that they might have for what is not valued and for what work isn't prioritized, and what outcomes don't actually seem to really matter in these contexts.
And when we start to make these visible, then that opens up space to think about, how might we be able to do things differently, where we can maybe hold all of these things. And you know, in my work that I'm doing around wellbeing, that's the next phase of our work, is working with clinicians to think about, how might we be able to do things differently, so that it's not one or the other, it's not a dichotomy. But how do we create space for all of these things to be viewed as important and to be prioritized?
Ellen Bernstein-Ellis You've started to dig into that already, because you have yet another 2024 article that you co-authored with Kayes, Soundy and Drown, Limited conversations about constrained futures: exploring clinician conversations about life after stroke in inpatient settings. And that examines how clinicians talk about the future with their clients. It analyzes 300 hours of observation of clinical interactions, along with 76 interviews with people with aphasia and 37 clinicians. I just want to say that's an astounding undertaking. So, as I read it, it felt like almost an extension of your 2013 and 2020 articles looking at hope, because you connected how what we say can impact how our clients see their future possibilities. Can you share some of the themes you constructed from all of that amazing data collection? I mean, I'm sorry, I thought 15 interviews were a lot, so then I saw this, and I'm like, oh my goodness, amazing.
Felicity Bright It was a pretty massive piece of work, but it was a real privilege to be able to sit and just observe interactions. And I'm so grateful to our people with stroke, many of whom were like two or three days post stroke, and they had the stranger come along and sit there and observe them for 12 hours, but also to our clinicians, who were quite vulnerable in that process of having somebody observe and analyze what they were doing. But at the same time, I think that work is really valuable for looking at what is going on.
What we could see is that the conversations that were being had tended to focus on quite a short term future, and we termed this theme constrained temporal horizons. When clinicians were talking about the future, the vast majority of those conversations were about the immediate future. For doctors and nurses--for nurses, it was often what needs to happen in this shift. For allied health and for doctors, it was what needs to happen before you discharge from our service into the next service. And for some allied health, it might be the first few days at home, but there was a view that talking about the longer term future beyond that should be done by other clinicians who might have more knowledge of what life could look like at that stage.
We also found that the talk about quite a constrained future was in the context of actually very limited talk, in the first place. So when we think about communication access, for instance, we think, oh, people with aphasia aren't getting very good communication. Actually, lots of people with stroke are not getting very good communication. Again, thinking about cultural factors, but actually communication is not happening well in stroke units, or, I think within the wider healthcare system.
You know, we've got a very task focused, medically focused situation. And so the conversations that were happening were on topics that were led by healthcare professionals, on the topics that they felt mattered-- the tasks they needed to do, the body structures and impairments. The goals that were set were about what needs to happen before somebody gets home. There was little talk about emotions. There was little talk about how you're feeling about what's going on, or what it might be like for you or for your family when you go home. And so this talk about the emotions and so on and future possibilities was left to patients and to families to raise.
And instead, the conversations tended to focus on what the healthcare professionals saw as essential topics for the episode of care. We certainly did see some conversations about the future. So I don't want to be disparaging, and I also want to acknowledge the very partial nature of research. I did not see every single interaction. I know that a lot of these quite personal conversations often happen in things like the shower, when the nurses or the OTS are helping the person shower. That's one of the few private spaces on the ward. And so I want to acknowledge that my analysis is based on a limited data set, and it isn't based on all the conversations that happened, but certainly there was a trend towards limited conversations.
We did see that clinicians would open some doors about the future. So they would talk about possible prognosis in the context of things like upper limb prognostic testing that is offered in some hospitals in New Zealand. We would see clinicians talk about what was meaningful to people, particularly in a context where the patient was struggling to engage, but often when the clinicians were talking about this wider future in this context, it was done to try and plant seeds about what the healthcare professional thought was realistic, and it was done to try and help the person engage in rehabilitation in the context of maybe struggling to engage at the best of times.
So I think what we could see was that conversations were limited. They were limited conversations about short term, constrained futures that didn't necessarily set people up with hope for the future, with a sense of possibility, with a sense of even starting that process about what matters, to thinking about what matters to me, what do I want life to look like?
Ellen Bernstein-Ellis Wow, and that really just circles us back to that concept of hope. Your work in hope has just been so meaningful to me. I've been really honored to be the guest lecturer speaking about aphasia to our counseling course that's taught by Dr Shubha Kashinath at Cal State, East Bay. And I've included, from the beginning, your work on hope. I just feel it's critical to give our students ways to understand and think about this construct and the role they can have in offering some hope building clinical interactions.
I'd like to close this interview by having you discuss some of your first work that I had the honor to read, and some of the hope affirming strategies that you suggest in your 2020 article. Because I just think that's really a gift.
Felicity Bright One of the things that really fascinated me in this work was how our people with aphasia in the research talked about how they look at their clinician and they are reading them to see, are you somebody who's going to give me hope or not? And if they didn't feel their clinician was going to support their hope or was going to help give them hope, or was going to disparage their hopes, they would shut down and they wouldn't share. And so I think, one of the things is to be reflecting on yourself. What are the messages that you are giving about how you are a safe person to talk to, about whether you are somebody that they can engage in these risky conversations about?
I think there's a couple of things as well. We need to recognize that just because somebody says they hope for something doesn't mean that they expect it to happen. We all have unrealistic hopes and expectations. You know, psychologist colleagues talk to me about how actually having unrealistic hope is part of being psychologically adjusted, and why should that be different for people with stroke? Who are we to say that we hold the expertise.
Now, that's not to say that there aren't challenges. So sometimes you might need to do a bit of a balance of, oh, is this something I need to engage in a conversation about? You know, an example is, if somebody is going to invest quite a bit of money in something that actually, there's no evidence to support and could potentially be problematic. There's a really good guideline I found from Christy Simpson, who's an ethicist, who talked about what are the positive effects that this hope has for people? What would be the impacts of taking it away, both positive, but also, what are the negative things that it would do? And so actually engaging in a bit of a risk analysis to think critically about what is holding this hope doing for somebody.
Linked to that in the latest paper we did around recalibrating hope, it really highlighted to me the importance of trusting people to often recalibrate their own hopes. So I went back to my original participants from my 2013 research a couple of years later, and I looked at their experiences of hope over that time. And what we found was most of them recalibrated their hopes. They hoped for different things over that time, and they had done that as they engaged in different activities, as they tried things, as they considered their progress, as they rethought what mattered to them. And so that really highlighted, to me, the need to trust people, but it also highlighted the need to think about, how do we support a context that supports people to do that recalibration.
Those who were more likely to recalibrate and hold both hope and realism together were people who had social networks, who were engaging in meaningful activities, and who had a sense of purpose and possibility. One of my participants didn't have that. They had lost their social connections. They had no activities in which they were engaging in what was meaningful, and their hope had shrunk.
And so it talks to me again, those earlier conversations we've had about well being, thinking about what's meaningful, what supports wellbeing, that's exactly the same thing that supports hope. How are we supporting people's social wellbeing? How are we supporting their relational wellbeing? How are we helping them connect to what is meaningful and what is possible, not just to their impairments, and maybe what is not working so well.
I think it's really important to be explicitly thinking about, what is it that helps people bring joy, have joy? What brings them peace in the present? And how can we help them have that sense that things are okay, even if they're not perfect, but also help them have that sense of looking to a future that's possible.
Ellen Bernstein-Ellis Okay, we only have a minute or two left, but I'm going to throw this last question out to you. Felicity, if you had to pick only one thing that we need to achieve urgently as a community of providers, of professionals, what would that one thing be? This is almost like your elevator pitch. You got 60 seconds here. So, so
Felicity Bright So my one thing, in a long, complex sentence, is that speech and language therapists need to reprioritize communication and supporting people to live well after stroke and aphasia, and they need to consider how we model to our colleagues and to our patients and families, and how we support cultures of care that value relationships and relational work, that value and support communication, and that value and support wellbeing.
Ellen Bernstein-Ellis Oh my goodness, well said, Felicity. Thank you so much for the honor of having this interview today. I know it's going to be impactful to our listeners, and I want to thank our listeners as well. For references and resources mentioned in today's show, please see our show notes. They're available on our [email protected] and there you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy, and if you have an idea for a future podcast episode, email us at info@aphasia access.org. For Aphasia Access Conversations, I'm Ellen Bernstein-Ellis, and thanks again for your ongoing support of Aphasia Access. Thank you, Felicity.
Felicity Bright My pleasure. Thank you for having me.
References and Resources
AUT Centre for Person Centred Research: https://cpcr.aut.ac.nz/our-research
Biel, M. (Host). (2016). An interview with Felicity Bright: The patient’s engagement and experience with you, the speech pathologist (No. 2) [audio podcast episode). ANCDS. SoundCloud.https://soundcloud.com/ancds/ep-2-an-interview-with-felicity-bright-the-patients-engagement-and-experience?utm_source=www.ancds.org&utm_campaign=wtshare&utm_medium=widget&utm_content=https%253A%252F%252Fsoundcloud.com%252Fancds%252Fep-2-an-interview-with-felicity-bright-the-patients-engagement-and-experience
Bright, F. A., Ibell‐Roberts, C., Featherstone, K., Signal, N., Wilson, B. J., Collier, A., & Fu, V. (2024). ‘Physical well‐being is our top priority’: Healthcare professionals' challenges in supporting psychosocial well‐being in stroke services. Health Expectations, 27(2), e14016.
Bright, F. A., Ibell-Roberts, C., & Wilson, B. J. (2024). Psychosocial well-being after stroke in Aotearoa New Zealand: a qualitative metasynthesis. Disability and Rehabilitation, 46(10), 2000-2013.
Bright, F. A., Kayes, N. M., McCann, C. M., & McPherson, K. M. (2013). Hope in people with aphasia. Aphasiology, 27(1), 41-58.
Bright, F. A., McCann, C. M., & Kayes, N. M. (2020). Recalibrating hope: A longitudinal study of the experiences of people with aphasia after stroke. Scandinavian Journal of Caring Sciences, 34(2), 428-435.
Bright, F. A., Kayes, N. M., Soundy, A., & Drown, J. (2024). Limited conversations about constrained futures: exploring clinicians’ conversations about life after stroke in inpatient settings. Brain Impairment, 25(1).
Ellis-Hill, C., Payne, S., & Ward, C. (2008). Using stroke to explore the life thread model: an alternative approach to understanding rehabilitation following an acquired disability. Disability and rehabilitation, 30(2), 150-159.
Foster, A., O’Halloran, R., Rose, M., & Worrall, L. (2016). “Communication is taking a back seat”: speech pathologists’ perceptions of aphasia management in acute hospital settings. Aphasiology, 30(5), 585-608.
Parr, S., Byng, S., & Gilpin, S. (1997). Talking about aphasia: Living with loss of language after stroke. McGraw-Hill Education (UK).
Simpson, C. (2004). When hope makes us vulnerable: A discussion of patient-healthcare provider interactions in the context of hope. Bioethics, 18(5), 428-447
Interviewer info
Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic conditions. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer.
In this episode, Lyssa Rome interviews Dr. Liss Brunner about how clinicians can incorporate social media into their work with people with acquired brain injuries.
Guest info
Dr Melissa ‘Liss’ Brunner is an early career researcher, lecturer at the University of Sydney, and a certified practicing speech pathologist with over twenty years of experience in supporting adults with swallowing and communication difficulties. Liss has clinical and research expertise in acquired neurologic disorders, particularly working with people who have experienced a stroke or traumatic brain injury (TBI). Diverse research experiences have enabled Liss to build specialist skills in qualitatively driven social media and digital health mixed methods research. Liss’s doctoral research laid the necessary groundwork in understanding the complexity of the issues surrounding people with TBI using social media and how it may (or may not) be addressed during their rehabilitation.
Listener Take-aways
In today’s episode you will:
Edited Transcript
Lyssa Rome
Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California and I see clients with aphasia and other neurogenic communication disorders in my LPAA-focused private practice. I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.
I'm today's host for an episode that will feature Dr. Melissa or Liss Brunner. Liss is an early-career researcher, lecturer at the University of Sydney, and a certified practicing speech pathologist with over 20 years of experience in supporting adults with swallowing and communication difficulties. Liss has clinical and research expertise in acquired neurologic disorders, particularly working with people who have experienced a stroke or traumatic brain injury. She focuses on qualitatively driven social media and digital health mixed-methods research. Her doctoral research laid the necessary groundwork in understanding the complexity of the issues surrounding people with TBI using social media, and how it may or may not be addressed during their rehabilitation. Dr. Liss Brunner, welcome to the Aphasia Access podcast, I'm so glad to be talking with you.
Dr. Liss Brunner
Thanks so much for having me. I'm really, really excited to be here and talk about one of my favorite things.
Lyssa Rome
Great. So I want to just start by asking you what made you want to study social media use among people with acquired brain injuries? And why is it important to study that?
Dr. Liss Brunner
I suppose I want to start by asking you a question, Lyssa, if that's alright. Okay. So, I mean, do you use social media?
Lyssa Rome
I do use social media.
Dr. Liss Brunner
And what are your favorite types of social media? And why do you use them? Hope you don't mind me asking.
Lyssa Rome
That's fine. So I primarily use two social media platforms. I use Facebook for professional reasons. There's a lot of networking amongst speech pathologists on Facebook. I also use it because I get some exercise classes there, so that's kind of nice. And then I also use Instagram, which I primarily go to to find out about knitting and sewing patterns, and to look for gardening ideas. So it's sort of more hobby-based for me.
Dr. Liss Brunner
Perfect. I love that. I mean, I use Facebook also, but it's mainly to stay in touch with like high school or uni friends and my family. And I also use Instagram, and like you lots of hobby-based stuff. I love watching videos around food. Always makes me hungry, but I still love it. But I also love seeing what people are reading. So I will also quite often post what I've just read and get ideas for books that I could be reading and things like that. And I use it a little bit professionally as well to share what I've been doing and what I've been working on. And I use Twitter or X, as it's now known, probably more so professionally. So I do a lot of sharing about the work that I'm doing in there. But I use a whole heap of other platforms, as well, and kind of all for different reasons.
If you think about it, over 60% of the world's population, actually, are active social media users. And we've just talked about how we use more than one platform. The average is actually seven different social media platforms for people who are active users. And so I got interested in supporting others in using social media, because I realized how integral it was starting to become, in my own life, and for the people around me.
After a brain injury, we know it happens like that in a split second. And it can happen to anyone at any age. And so after those brain injuries occur, people lose lots of their friends. And, you know, their relationships just aren't what they used to be. They're quite often strained. They're not as fun as they used to be. And it can be really hard and devastating, not just for that person, but everyone around them, as well. And so family and close friends can find it really challenging to stay connected in a really meaningful way. And you don't really realize how important that is until it changes. And so, in rehab, I really like to support people to build up their social communication skills, with different people, different places. And I really believe that these days, one of those places we need to consider is social media. It's great to stay connected, you can make new friends, you can practice your communication skills in different ways, you can just kind of be included. So you know, you can tell everyone what's going on in your life after injury, or you can ignore that and just talk about other things like gardening and food and stuff. You can use social media to be what you want it to be. So that's kind of why I got into it. And why I think it's important.
Lyssa Rome
It sounds like you've just described both how people use it before their injury, but then also some changes in use after their injury, for example, and think of in the States—I don't know if this is also true in Australia—there's Caring Bridge and Go Fund Me and other sorts of websites where people are sharing information about their rehab process and about what's going on with someone who's had a brain injury or another kind of illness. Tell us a little bit about how people with acquired brain injuries are using social media.
Dr. Liss Brunner
Yeah, absolutely. I think this is one of the most interesting things to me is that I've interviewed lots of people after a brain injury about how they use social media. And just like many of us, they use a variety of platforms, they have individual preferences, they use them for different purposes. Some prefer Instagram, others prefer Facebook, others prefer online gaming with their friends. Many of them use social media for making and maintaining relationships. So that connection, others use it for altruism, so supporting others in need and sharing their experiences and strategies after a brain injury. But others also use it for advocacy, and activism. So sharing their experiences after brain injury to raise awareness, and reduce stigma that can be associated with it. Others are really active in contacting politicians and advocating for better support services and infrastructure. So they use it for a multitude of reasons. And it's quite often deeply personal, the way in which they do so.
Unfortunately, I did also find out that quite often, people kind of relearning to use social media, sort of through trial and error. So they don't necessarily get lots of support to do it. they've encountered lots of challenges in using it well, so they can have some difficulties with cognitive fatigue, or even just navigating the different social media platforms because they're quite often apt to change, so to speak.
Lyssa Rome
RIght. Yeah. It sounds like they're both some real benefits to people with acquired brain injuries, but then also some risks involved. So maybe you could tell us a little bit more about some of those risks and some of the benefits for people with acquired brain injury using social media?
Dr. Liss Brunner
Yeah, absolutely. I mean, I'll start with the good stuff. So there's lots of advantages to using social media. I mean, obviously, we can use it to create connections, we can totally use it for the entertainment factor—I do all the time. But it's also a huge source of information and news can be an absolutely wonderful platform for sharing information and advocating for awareness. As I've said, I think it's a really great way to share your thoughts and connect with others if you're feeling particularly isolated. And I know that for people after brain injury, who have difficulty with their social communication, there's lots of advantages in particular.
So some people may talk a lot more after their brain injury and some people may feel that they talk a bit too much. And so, you know, platforms like Twitter, or X, that have a shorter amount of space for you to make a post, that might mean that they have an opportunity to really work on limiting how much they say. And likewise, for those who have the opposite issue, and they kind of are more likely to struggle to find things to say, the same platform could be seen as a bit of a relief, because there's less pressure to write really long posts. So, you know, I think there are functions of the different social media platforms that can be really advantageous for people who have difficulties communicating.
For people who have difficulties concentrating in fast-paced conversations in person, the asynchronous approach of social media can be again, provide less pressure, they don't have to think and respond in the moment, they can actually take their time to do that. So that can provide a bit of relief as well. And I find in general, people are way more tolerant around incorrect spelling and grammar and things like that in social media. And you can type words, you can add pictures. I love using GIFs and memes and emoticons. So, you know, all of these things can be used to make communication easier in these platforms. So lots of advantages, I think that we could kind of really draw on to support people.
But obviously, there's also that downside, that darker side of social media, there's lots of risks. And it can be a really tricky space to navigate with and without a brain injury. And there's lots of concern, particularly from clinicians and family and friends around the real and sometimes perceived risks of using social media after a brain injury. So I've spoken to lots of clinicians and family members over the years. And they often tell me about how they're really worried about people being fairly vulnerable online, that they're at risk of being exploited, that they may ruin their own reputation by some of the things that they're saying online.
And quite often, as clinicians, I suppose we can act as gatekeepers in a way. And so there's often this really big focus on our duty of care in the clinical context, because we want to prevent harm, we want people to do well and not actually be hurt more. And so we can be really risk averse, I suppose. There can be this real sense of responsibility for minimizing all of the risks. And so there's lots of issues around people getting fixated on social media, and that might lead to cognitive fatigue. It could be that they're having negative mental health or emotional effects of what they're seeing in social media. They could start withdrawing from in-person interactions because they're spending a lot of time online.
I mentioned reputation management. So potentially people would say something online that will influence how other people perceive them. So whilst people are in post traumatic amnesia after a traumatic brain injury, they may regret posting something. Others have reported that their family members tell them that they're saying inappropriate things online and that's negatively affected their relationships. And sometimes it's affected their employment opportunities down the track as well. Others have had difficulties managing their finances and security due to difficulties with disinhibition and impulsivity. And so there's lots of concerns in particular around things like cyber scams and, and things like that.
Lyssa Rome
It sounds like the risks that a lot of us are faced with when we're using social media platforms. But even more so right, because of some of the issues specific to people with brain injuries that you've just described?
Dr. Liss Brunner
Absolutely.
Lyssa Rome
I'm wondering what kind of barriers and facilitators there are to successful social media use? You mentioned clinicians, reluctance, or sort of concern about the risks? What are some of the other things that we should be thinking about?
Dr. Liss Brunner
Yeah, absolutely. I mean, there's lots of barriers. But there's also lots of facilitators as well, which is good. I've spoken about some of the risks, but some of the other barriers are sometimes quite immediate. So some people might have physical barriers to using social media. So their vision might have changed, their hand mobility, and fine motor control might have changed, or they might not be able to independently go and get their device. And so they might need someone to go and get it for them. Others may not have devices, or reliable internet access, particularly if they're in a hospital, sometimes internet access is restricted. So there's those actual accessibility issues.
In terms of the changes in cognitive communication, I think, a lot of what we can see in in person interactions—so when people are having a face to face conversation—those sorts of changes we see after a brain injury can often be influencing their online interactions just as much. So for example, after a traumatic brain injury, inattention, and being easily distracted, can be quite an issue for many. And so you might see this where someone will start responding to a post, but they'll get distracted, and they'll send, you know, a message that they either didn't mean to send or it wasn't complete, or it gets misinterpreted. And it can just unravel quite quickly.
Sometimes, you know, emotional control changes quite often after an acquired brain injury. So managing your feelings can be really challenging. So some people can get really overloaded by the amount of information in their social media feeds and timelines. Or they might get really overwhelmed when they're seeing negative or sad posts. Like, obviously, we're seeing lots of sad things and disturbing things in the news, in particular, online at the moment, there's lots of conflict around the world. So being able to manage your feelings can be really challenging if you're not conscious about the influence social media posts can have on you.
Sometimes, you know, there's issues in impulse control. And so some people will get sent friend requests and they will click accept without thinking, Oh, actually, do I know this person? Or do I want to have this person as a friend or, you know, posting before you think about what you're saying and how someone's going to take that and what the potential repercussions might be? It could be that, you know, people have difficulty finding the right words and that they may put words in that they're not wanting To say, and again, that can get misinterpreted.
The other thing is that there's lots of information. And so it's quite hard to find and constantly changing. And I feel like that can increase the demands on people's memory, and how they sort through and organize information. So that can be overwhelming and challenging as well.
On the flip side, there's lots of facilitators that we can harness for good to combat some of these things. And during my PhD, I identified five factors that influence social media use after a brain injury. And sometimes these things are barriers, and sometimes they're facilitators. So I think it's really quite helpful to think about things in this way.
And so the first factor is purpose. So it's really important to think about, if someone is motivated to use social media, what's motivating for them? It could be that they are wanting to practice their communication. It could be that they are wanting to connect. They might want to find a romantic partner. They might want to figure out who they are now, after their brain injury. It could be just to fill in time, right? So purpose really influences how someone uses social media.
The second factor, I think, relates to knowledge and experience. And so it's not just that person with a brain injury, but also the people around them. So some of the barriers can be that people aren't really clear on how to support people to use social media. And that could be because of their own experience and ability, and confidence. So all of those things can really influence how you use social media.
The big one, that third factor is caution, I think, you know, it's really critical to be aware of the risks, which I've spoken about, and how to navigate them.
The fourth factor is networks. And so it's really kind of thinking about who is your online network of people? So who do you want to contact? Who do you maybe not want to stay in contact with? And increasing opportunities to have really successful interactions with those people.
And the fifth concept is really around support. So trying to find structures that influence success in social media interactions. So giving people practical supports and resources, whether that's an actual person, or whether it's a training program, or practice, with someone setting them up with a PR so they can have someone to practice with regularly.
I think they're the five different factors that really influence how someone who's going to use social media, and whether they use it well, safely. And meaningfully, I suppose, because that's what you want it to be. The other thing that I think is really important, from a clinician perspective, in terms of facilitating use is to kind of be proactive. So rather than being reactive, and just only stepping in when problems happen is actually being a person that can support people with brain injury to use social media and asking those questions. So I feel like some of the research that I've been doing is really kind of been critical to try and find guidance for clinicians on how to do that, and how to have those conversations.
So I spoke about those five different factors. I reckon if, for example, you were wanting to think about someone's purpose in social media, really, you just need to identify what platforms they want to use? Why do they want to use them? What's going to be really meaningful for them? So writing that down and thinking: Okay, who are you connecting with in that? Why do you want to use it? How can we make that better for you? So it's a really nice way to just start those conversations.
Lyssa Rome
When I think about clinically sort of getting to know someone, part of it is who are you communicating with? Like, who are you having conversations with? And if we think a little bit more broadly, you know, it's not just conversations in person or over the phone. And so to take an inventory that really reflects the person's actual communication across all different kinds of settings, is really important. I'm curious how people with acquired brain injuries are using these different social media platforms, you sort of mentioned some of them along the way, as you've been discussing the risks and the benefits, etc. But I just wonder if you could say a little bit more about that.
Dr. Liss Brunner
Yeah, I mean, we've been doing a few different little studies looking at how brain injury is spoken about, and who's using it in different platforms. So we've done a study, study looking at Twitter, it was Twitter, then it's now called X, I suppose. But back then it was Twitter. And we kind of really just explored what was being said about brain injury. And actually, I found there were actually lots of people with brain injury using the platform to connect with others to share issues around their health, life after their injury, raising awareness, and also as a source of inspiration and hope. So both giving and receiving those messages. So that was really nice.
And then we've recently actually just completed some studies where we looked similarly, at YouTube and Instagram. And in both platforms, it was really clear that this is a space where people are sharing their stories of change. And because of the inherent functions of the platforms, they can share content that they make, or reshare, and a lot of it is quite visual. It really gives that person who's sharing the content, a lot more control over how they tell their stories. And I love seeing and hearing how people use social media to tell their stories. We're all so different. And even though there are similarities amongst the stories that people are telling about their brain injury, there's so much personalization and individuality. It's fantastic to see.
In some of the interviews that I've done, you know, one person told me about how they use Instagram to share their photos of the world so that they were a photographer before their injury. And since their injury, they see the world differently. And they're taking very different photos.
So I think everyone's using different platforms the way in which they want to, yeah, it's super interesting. Others have made using social media their vocation, so as a way of connecting with others who've had a brain injury and sharing, you know, tips and ideas to support recovery. And so that's kind of their job, and it's giving them that sense of purpose. Not just in using social media, but purpose in life and giving back and being able to feel like they have a sense of belonging and contribution. So, yeah, I find it super interesting. I love it.
Lyssa Rome
Well, and one of the reasons that I was really drawn to your work and wanted to talk with you on this podcast is that it seems like at its heart, what you've been studying and working on is promoting and enabling life participation for people with acquired brain injuries for whom social media is an important life activity—either was already before the injury or is now after the injury. And, to me, it's just, it's so meaningful for people and to sort of turn our attention toward social media in this way, I think is great. So it makes me wonder, to what extent are rehab professionals, speech language pathologists and others, addressing social media use with their clients or their patients?
Dr. Liss Brunner
This is a really hard answer to give. Because I'm speaking generally. And I know that, you know, we are very individual as clinicians as well. But when I used to talk about this, you know, I started more than a decade ago in this space, I would ask clinicians when I was talking at presentations, who's worked with clients on using social media, and I would maybe have one person put their hand up. Now, when I ask that question, the response is actually very different, and I would say, you know, the majority of people would indicate that they've worked on using social media in some way, shape, or form.
But I feel like we don't necessarily have lots of guidance on how to do that well. And so lots of clinicians have said to me that they feel kind of lost when it comes to using social media. Not everyone uses social media and some of us have our preferred platforms that we feel comfortable with and don't know anything about some of the other platforms, right? Some of us say using social media is just a bit of fun. And it's, you know, a bit of a distraction from real life. So we have lots of attitudes and beliefs around it.
And there's lots of challenges in addressing social media, because as I said, the platforms are constantly changing. And it's really hard to stay up-to-date. And so lots of people are really uncertain about all of those factors, and then they are, we've also got all of these medical and legal responsibilities, and we don't know where our boundaries are, in terms of navigating risks— whether we should be gatekeepers, or whether we should be just supporting people with information and education and coming in and supporting them if problems happen. Lots of people just basically want guidance, was what I heard. They want to know when to introduce the use of social media. They want to know when to let go of control of how people use it, and how to encourage really positive interactions. I feel like a lot of people have told me that because they're so uncertain, they tend to be mostly restrictive, rather than proactive. And so that restrictive practice occurs in lots of different ways.
So it could be encouraging, and helping families to keep devices at home and away from people who have a brain injury. It could be that they give people the devices, but they limit the internet connectivity, so they can't use them functionally. Or it could be that they manipulate the privacy settings. So it allows people just to lurk and watch other people's posts, but doesn't let them post and interact. And so, you know, there's often issues where family members are encouraged to monitor social media posts for appropriate content and things like that. And I find that's, you know, not ideal for anyone, really, no one wants to have to do that. And no one wants that to happen to them. And it can create lots more barriers to autonomy. I'm pretty sure if my parents were telling me what to do and what not to do in social media, I'd not have a great response. And I also feel if I tried to tell my kids what to do and what not to do, they'd probably go straight out and do what I told them not to do. Because as if I would not because I'm old. Right? And not cool. There’s probably another word for cool now that I don't know.
You know, I think it's, it's really personal. It's tricky to navigate. And as clinicians, we've got to be really clear about what our attitudes and beliefs are and how they influence what we perceive as appropriate or inappropriate and how we navigate those conversations. I love referring people to the Mark Ylvisaker and Tim Feenye paper that's about Dobermans and Poodles. Because it really does push people to think about how we interact and influence people in our rehabilitation practices. So I think as clinicians, we want to be proactive, but we're just not quite clear on how we should do it.
Lyssa Rome
In one of your papers, you wrote about how we as speech language pathologists can move from a sort of paternalistic attitude toward supporting the autonomy of our clients with acquired brain injury. And it's something I think about a lot, not necessarily just in this context of social media, but in all other kinds of ways. And I'm wondering if you could say a little bit more about that, and about how SLPs and other rehab professionals should be thinking about including social media training and the work we do?
Dr. Liss Brunner
Yeah, it's really tricky. Because, you know, we don't want to be restrictive. We don't want to be gatekeepers, we want to be supportive. And I feel like sometimes when we don't have guidance, from our evidence in the research or practical resources, we can flounder a little bit, particularly when we know there are so many risks associated with something like using social media. I think we can probably all acknowledge that restriction isn't the answer, because it doesn't set people up for real life. It doesn't give them opportunities to learn from mistakes, which is what we would do a lot of the time in real life.
I think one of the things that we can really do is harness the knowledge and skills of the person themselves, to help us as clinicians to know more about how they want to use social media, which platforms they're interested in, particularly if we've got no clue about how to use it ourselves. And so this could be a way to really educate ourselves, and kind of have more of a collaborative approach with that person. So you can set goals together, you can identify what's going to look like successful social media is to that person. How can we use what they did before their brain injury to guide us in terms of, is this something you want to get back to? Or do you want to do something different now? Those sorts of things. We can look for ways to provide them opportunities for participation, and give them some instructions on what might work really well. Let them go and try that. Give them education and really constructive feedback, so that they're working towards those positive interactions and trying to mitigate those risks in that really proactive way. Obviously, I think we need some policy around this, and guidance so that we can actively support people.
But I think probably one of the first things that we need to do is address social media goals in rehabilitation. And these can be informed by other successful brain injury rehabilitation approaches, you know, so we've got lots of information on functional rehabilitation, we know that more meaningful rehab is motivating and more likely to have better outcomes. And we could adopt strategies that have been used in rehab that support other activities that we feel are higher risk. So always I think of return to driving. You know, we support people, occupational therapists, support people to return to drive and I think that's inherently really dangerous. But we do it because we see it as a really important goal for people to return to after injury. I kind of feel that social media is kind of in a similar vein, we know there's risks, let's put education and practice in place to support them to do well.
Lyssa Rome
Speaking of education and practice, you've created a training program for people with acquired brain injuries on how they can start to successfully use social media. So can you describe that and tell us a little bit about that program?
Dr. Liss Brunner
Yeah, I mean, I worked as a clinician for many, many years before I got suckered into research and fell in love with it. And so I always want to think about the practical implications of the research that I'm doing, I want to provide resources and guidance. And so I was very lucky to be able to work with the team at Sydney Uni, and the University of Technology in Sydney, and brain Injury Australia. We were able to source some funding through a grant, which was fabulous. And we had this larger project called the Social Brain Toolkit. And part of that was developing social-ABI-lity. And so it meant that we were able to work with people who've had a brain injury, some family members, some clinicians, and other researchers to design this social-ABI-lity program. And essentially, it's a free online training program on how to use social media after brain injury.
Very simply, it's designed so that people with a brain injury can do it themselves, or they can do it with family or a friend or a clinician to support them. It takes about two to three hours to work through everything. And there's four modules, and so the modules are: What is social media; staying safe in social media; how do I use social media; and who can I connect with in social media. And we've really used metacognitive principles to support people to make a plan for using social media in a way that really suits them. And so we wanted to give them ideas on staying safe. When using social media and cyber safety, even those, there's one module on staying safe. Cyber safety is actually threaded through all four modules, because it was such a priority for everyone that we spoke to. And it just provides people with opportunities to learn about using social media, and really promoting the idea of finding social media buddies and building up a support network in social media. So there's written info, there's videos, there's questions to work through, there's a printable worksheet, so people can write down and keep the messages of the four modules. And things like that.
We've run a pilot study, so that people could test out the prototype. And they found it was quite valuable. They thought it was really engaging and functional. They also told us what they didn't think was working. So we tweaked it, and hopefully made it better. And then we actually piloted that again, because we knew that just the training by itself was probably not going to achieve the best outcomes possible. We wanted to know whether group intervention would help. So we kind of got people to do the social-ABI-lity program, and also a peer practice group. So we set up the social-ABI-lity plus a social media practice group kind of thing. We set up some Facebook groups, because Facebook is one of the social media platforms that lets you set up a group and have private conversations. But you also don't necessarily have to be friends with everyone. So it meant people could keep their distance if they wanted to.
In this study, we ran two groups for 12 weeks. And we basically just gave them stuff to talk about and connect with in this Facebook group. We also added in occasional meetups on Zoom so that people could meet each other face-to-face, even though it was online. So, you know, at the same time, they could have conversations and get to know each other in that way and see each other's faces. And the two groups found that this was really beneficial. So they had more confidence in using social media and they were just thinking about using it in a very different way.
The other thing that we thought about though was we know that there's just this connection between people who've actually lived the path, rather than, you know, being directed by someone like me who hasn't raised this difference in connection. And so we wanted to know whether having a peer moderated group would actually change things. And so we've recently just run a peer-moderated group. And so we kind of sweet-talked two of our previous participants who were quite active in the groups and said, “Do you want to be part of our research team? Would you like to moderate a group? And we'll see what happens.” And so we negotiated with these two awesome people. And they ran the group for eight weeks. So we shortened it a little bit just to make it more feasible and test it out. And before we started the group, we met with our two peer moderators, and said, “What do you feel comfortable doing? What don't you feel comfortable doing?” And we negotiated our roles before we even started, and even though they weren't significant changes in confidence, or any of the quantitative data that we collected in terms of quality of life and things like that, the conversations that people had, were just, I'm going to use one of the moderators words “profound.” They were so different, they were more poignant, and deeper, the conversations that they had in these peer-moderated group, and the reflections that all of the participants had really showed that they connected on a really different level, which was quite lovely. Again, they found it was all feasible and engaging. But there was something about that added element of the peer moderators that made it extra awesome for the people involved, as well as for the peer moderators themselves, they just found that they had improved confidence and improved sense of self for being involved in it. So it was that sense of giving back that really made that group scene, which was really lovely.
Lyssa Rome
I think that that's so exciting. And it makes me wonder what else you're working on? And what's coming next.
Dr. Liss Brunner
Yeah, I mean, there's so many ideas, and it's just a matter of actually making them happen. Lyssa, at the moment, were actually designing a social media communication assessment tool that we hope will really help not just clinicians, but also people with brain injury, to start this process of figuring out their purpose in using social media and what their goals might be. And so we're designing it with people with brain injury and clinicians around the world. So that hopefully, it will be really relevant to everyone to just start those conversations. So we hope to have the first version of this available to share freely, hopefully, by the end of the year—next year, definitely. But I'm really excited to see how that pans out. That's the first next step.
Lyssa Rome
Yeah. I think that that is really exciting. And it it, it reminds me of something else that you've written about, which is how SLPs can almost assess their own social media use or think about it, and step back and think about it in order to better help their clients in their social media goals. And I'm wondering if you could explain a little bit about that for our listeners.
Dr. Liss Brunner
This is some work that I actually really loved doing. I think one of the things that can really support how we're able to assist others in using social media is to be really aware of our own use of social media. And I think in this particular paper that you're referring to, it's like we use the metaphor of a garden. And we kind of encouraged people to think about their own use and purpose of using social media. And we used this very arty based approach to thinking about our professional social media identity. And so we kind of describe this process of visualizing your own social media garden. And so it's a metaphor you can use to think about your purpose and build a strategy around how you're going to achieve that. And I think it can be used to get kind of like this real understanding of what social media really means to you, and identify aspects of your own professional identity that are important and could be enriched through using social media. So I think, you know, if you're interested in not just how you use social media professionally, but also how you can help people clinically, in this paper, we really tried to provide another resource to outline strategies for using different techniques to build up your professional and clinical practice.
Lyssa Rome
For me, as a clinician, I think one of the takeaways from this conversation and from reading your articles, which we will link to in the show notes, is this idea that we should be reflecting on our own social media use, and our own assumptions about social media use and its risks and its benefits. What other takeaways should listeners be thinking about—things that they can implement in their own clinical practice?
Dr. Liss Brunner
I couldn't agree more, Lyssa. I think reflecting on your own social media use is really powerful. I think it's a really good place to start. And I think then you can just start by having the conversation with people asking about why they use social media. Which platforms are you interested in? What do you want to get out of using social media? Who do you want to connect with? Just having those conversations, I think will give you very rich data to start making some decisions, having ideas around what goals could be targeted. I think, as you said, we'll put the link to some of my papers. But certainly the facilitators that I've mentioned in the AJSLP paper, can be kind of those five factors that can really guide you in thinking about the different aspects to consider around social media use. So you can kind of use that as a bit of a guide, until we're able to create and trial new resources to support that further.
I think there's probably three key resources that I typically recommend that people check out if they want to support people to use social media. I think the obvious one that I'll point out is the social-ABI-ity program. And we'll pop the link in there. I think the other thing that I'd like to mention is another free online training program called Cyberability. And this has actually been designed by some colleagues here in Australia at Monash University, led by Dr. Kate Gould. But it's been built in collaboration, again, with people with brain injury, but who have also been scammed online. So they've got that lived experience. And they contribute their strategies and tips and what they've learned from going through that experience in this training. So I'll make sure that we get the Cyberability training link for you as well. The other resource that I find really useful here in Australia, is that we've got the Australian eSafety Commissioner website. And it's actually been supported by our government to provide lots of advice and resources on staying safe online. And I think, for kids in particular, I can be really handy. So I don't particularly work with kids. But I find that some of the resources there are really good if you do work with children. And there's actually an eSafety guide. And so it actually lists all of the different social media platforms and talks about how to protect your information and report harmful content on those particular platforms. So I think that's a really handy tool for people to know about as well.
Lyssa Rome
Those seem very useful. Thank you for bringing those to us. And again, we'll link to those resources. I am so glad to have had this chance to talk with you and I'm really looking forward to all of the exciting things that you're working on now. Dr. Liss Brunner, thanks so much for being a guest on this podcast.
Dr. Liss Brunner
Thank you so much for having me, Lyssa. It's been wonderful. I could talk about this stuff forever and a day. So I'm really pleased that we've had this opportunity. Thank you.
Lyssa Rome
And thanks also to our listeners. For the references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at [email protected]. Thanks again for your ongoing support of Aphasia Access. For Aphasia Access Conversations, I'm Lyssa Rome.
Additional Resources
Contact Liss: [email protected]
eSafety Commissioner: www.esafety.gov.au/
eSafety Guide to Staying Safe Online: www.esafety.gov.au/kids/I-want-hel…ing-safe-online
Cyberability - free training on how to stay scam safe after brain injury: www.cyberability.org.au/
social-ABI-lity - free training on how to use social media after brain injury: abi-communication-lab.sydney.edu.au/courses…I-lity/
Brunner, M., Hemsley, B., Togher, L., Dann, S., & Palmer, S. (2021). Social media and people with traumatic brain injury: a metasynthesis of research informing a framework for rehabilitation clinical practice, policy, and training. American journal of speech-language pathology, 30(1), 19-33. https://doi.org/10.1044/2020_AJSLP-20-00211 *Email Liss for a copy*
Brunner M, Rietdijk R, Summers K, Southwell K, Avramovic P, Power E, Rushworth N, Togher L (2024) ‘It gives you encouragement because you're not alone’: A pilot study of a multi-component social media skills intervention for people with acquired brain injury. (Invited paper for a Special Issue on SLT/P clinical management of traumatic brain injury across the lifespan), 59, 543–558. https://doi.org/10.1111/1460-6984.12806
Brunner M, Rietdijk R, Avramovic P, Power E, Miao M, Rushworth N, MacLean L, Brookes AM, Togher L (2023). Developing social-ABI-lity: an online course to support safe use of social media for connection after acquired brain injury. AJSLP (Invited paper for a Special Issue of Select Papers from the International Cognitive-Communication Disorders Conference), 32(2S), 924-940. https://doi.org/10.1044/2022_AJSLP-22-00099
Brunner M, Rietdijk R, Togher L (2022). Training resources targeting social media skills: A scoping review to inform rehabilitation for people who have an acquired brain injury. JMIR, 24(4), e35595. https://www.jmir.org/2022/4/e35595/
Brunner M, Bryant L, Turnbull H, Hemsley B (2022). Developing and sustaining a social media ecosystem in speech-language pathology: Using innovative qualitative methods to visualise and cultivate a social media garden. IJSLP (Special Issue on New perspectives, insights, and practices: Qualitative research innovations in Speech-Language Pathology), 24 (5), 558-569. https://doi.org/10.1080/17549507.2022.2069860 *Email Liss for a copy*
Ylvisaker, M., & Feeney, T. (2000). Reflections on Dobermanns, poodles, and social rehabilitation for difficult-to-serve individuals with traumatic brain injury. Aphasiology, 14(4), 407–431. https://doi.org/10.1080/026870300401432
Welcome to this Aphasia Access Aphasia Conversations Podcast, a series of conversations about aphasia, the LPAA model, and aphasia programs that follow this model. My name is Janet Patterson. I am a Research Speech-Language Pathologist at the VA Northern California Healthcare System in Martinez, California, and a member of the Aphasia Access Conversations Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their efforts in engaging with persons with aphasia and their families through a variety of educational materials and resources. I am the host for our episode that will feature Lauren Bislick, in which you will hear about friendship, yoga, mental imagery and aphasia. These Show Notes accompany the conversation with Lauren but are not a verbatim transcript.
In today’s episode you will hear about:
the value of friendship in our lives and Mission SPEAK,
ideas for creating an accessible yoga program for person with aphasia, and
the value of mental imagery.
Dr. Janet Patterson: Welcome to this edition of Aphasia Access Conversations, a series of conversations about the LPAA model and aphasia programs that follow this model. My name is Janet Patterson, and I'm a research speech language pathologist at the VA Northern California Healthcare System in Martinez, California. Today I am delighted to be speaking with Dr. Lauren Bislick, a newly minted Associate Professor at the University of Central Florida, in the School of Communication Sciences and Disorders. Lauren is also the director of the UCF Aphasia House, and the director of the Aphasia and Related Conditions Research Lab. Across her work efforts, Lauren investigates the diagnosis and treatment of acquired apraxia of speech and aphasia, the value of mindful body practices such as yoga, friendship development, and interprofessional education and practice.
In 2023, Lauren was named a Distinguished Scholar USA by the Tavistock Trust for Aphasia UK. The Tavistock Trust aims to help improve the quality of life for those with aphasia, their families and care partners by addressing research capacity related to quality-of-life issues in aphasia. Congratulations on receiving this honor, Lauren. Aphasia Access collaborates with the Tavistock Trust for Aphasia in selecting the awardees and is pleased to have the opportunity to discuss their work and the influence of the Tavistock award.
Welcome Lauren, to Aphasia Access Conversations.
Dr. Lauren Bislick: Thank you, Janet, and thank you Aphasia Access for having me. Also thank you to the Tavistock Trust for the review team for nominating me and for selecting me. I'm truly very honored to be a recipient of this award.
Janet: It's a well-deserved award. Lauren, as we said, you were named a Tavistock Trust, Distinguished Scholar USA for 2023. You join a talented and dedicated group of individuals in this award. How does receiving the Tavistock award influence your clinical and research efforts in aphasia?
Lauren: First, I'll say again, I was truly honored to receive this award and was definitely surprised. The nomination announcement occurred at the Clinical Aphasiology Conference, and they didn't give us a heads up that the announcement was coming through, so I was very surprised. I think in terms of how this has influenced my clinical and research efforts as an academic, and as a clinician. I think a lot of people can relate to that feeling of imposter syndrome, and so receiving this award has helped me push that feeling to the side a little bit in some aspects of my work and of what I do. It's also allowed me to feel very proud about what I've been able to do. but more so through my collaborations and my students and the community that we have at UCF. It's allowed me to grow connection. Since receiving this award, people have reached out to me to talk about collaboration or wanting my help in terms of more of a consultant role. It's allowed myself and my lab to reach a larger group of people and has definitely supported that emphasis on quality-of-life work, which is not necessarily the training that I focused on when I was in my doctoral program. That’s been something that I've come into in my time as an assistant faculty member or a junior researcher. It feels very good to be acknowledged for that and for these lines of work being supported.
Janet: And well deserved, for certain. Lauren, I would like to begin by asking you about your recent work investigating the role of friendship for persons with aphasia. I believe in the power of friendship and community during joyful times, and also during sad times in one's life. One of the unfortunate consequences of aphasia can be the loss or diminishing of friendships, or the communication skills important to developing and sustaining friendship and community. How did you become interested in this aspect of aphasia? And what conclusions have you drawn from your research?
Lauren: Thank you for this question. One of the things that I talk about frequently in both my aphasia course and the motor speech disorders for our graduate students, is how individuals with acquired communication disorders, whether it be linguistic, or motor based, is that their social circles get smaller, and we know that's a problem in life. Friendship is an essential component of quality of life, and as you said, whether celebrating the good things or you're going through a hard time you need those friends. This is an important area that I believe gets overlooked although now we have a couple of different groups looking at friendship and aphasia, which is wonderful. I actually have to thank Dr. Elizabeth Brookshire Madden for pulling me into this work. She is at Florida State University, and I like to call us aphasia sisters. We went through the same doctoral program, and she was one year behind me. We became very close during that time, both as friends, but also in the work that we do. [Aphasia Access note: Elizabeth Madden was selected as a Tavistock Distinguished Scholar USA in 2024.]
One of the other faculty members at Florida State University, Michelle Therrien, does work on friendship, but in the pediatric world. This grew out of conversations between Liz and Michelle, where they started talking about how we can look at friendship and aphasia. Clearly, we all believe it's an issue, but it hasn’t been well investigated. That was shortly before the team Project Bridge Conference, which is really what helped initiate this kind of area of research for our group. Liz and I met at the 2018 Project Bridge conference and started facilitating a friendship group; she took the lead in this area. I got pulled to the yoga group, which we'll talk about later. Liz talked with a number of care partners of individuals with aphasia, and started discussing their social groups, and then friendship. Leaving that conference, she had some really great ideas about where to go next and what was needed in the area of friendship. From there grew her team of myself, Michelle Therrien, Sarah Wallace, at the University of Pittsburgh and Rachel Albritton, who's also at FSU.
In our first study, we did a survey with SLPs trying to ask if SLPs see friendship as being an issue? You know, is this us projecting, or is this something that clinical speech-language pathologists are seeing as an issue? If so, are we addressing it in the field? What that initial study showed us was that, yes, SLPs report that their clients are experiencing loss or difficulty with friendships. They also reported that there are barriers, there aren't assessments that ask about friendships, and there aren't interventions. So, while they see this as an important thing, and something that SLPs believe that this was within our scope of practice, they need a little more guidance as to how to support people with aphasia in terms of maintaining friendships, and then also developing friendships.
Following that study, we then spoke to people with aphasia and also spoke to caregivers of people with aphasia to get their perspectives and their lived experiences. What happens to friendship, immediately after a stroke? In that acute phase? What happens to friendship during that chronic phase? And then where are they now? What we found through these conversations is that many individuals reported that their friendships had changed after they acquired aphasia, both in the acute phase and the chronic stages. The same could be said for caregivers as they are navigating this world as caregivers. They are experiencing changes in their friendships. With aphasia being a chronic condition, this is something that people are living with for the rest of their lives. Friends can kind of be there in the beginning, and that acute care phase where they send messages or come by to say hello and show their support. As they realize that the communication impairment isn't going away, they don't know what to do and may get a little uncomfortable, feeling bad that they don't understand their friend with aphasia, or they don't know how to support them in their communication, or this problem isn't disappearing. This is me projecting, but I believe that's what's happening and what we're seeing is that people with aphasia, and their caregivers are reporting this loss. They also are reporting gaining new friends as they become ingrained in social groups. They meet other people with aphasia or care partners of other individuals with aphasia and develop friendships that way. They are also reporting smaller social groups, smaller groups of friends from their pre-aphasia life, dwindling for a lot of people. We think from our research what we're finding is that we really need interventions that target friendship maintenance and development. Some of that may be as simple as providing education, inviting friends into the therapy room. We do this with care partners, we can also offer this to friends to see how we are interacting with your loved one with aphasia. We can provide key tools to support communication; I really think a big piece of it is education. We’ve got to find the best way to navigate this in the clinical world. I think that's the next step not only for our group, but for the other groups that are looking at Friendship.
Janet: Lauren, you make some very good points in those comments. I wonder, do you have some brief thoughts or very specific ideas about how as clinicians, we can act in ways to optimize the friendship activities of our clients, or their care partners, recognizing though, that everyone has different styles and needs for friendship? It's like you say, we should not be projecting our desires and our styles and our needs onto our patients, but rather listen to them and figure out what their needs and desires are?
Lauren: Number one, right there, is listening to our clients, listening to their loved ones, what do they need? As I mentioned before, I think education is a really big piece of this. That may mean just having some materials as a speech-language pathologist that you can send home with family members that they can give to friends, right, so not just materials for that care partner, or the person with aphasia, but materials for friends. Here's something that will educate you a little bit on what aphasia is, there are some ways that you can successfully communicate with your friend with aphasia, here's what to expect. I think some of it is people just don't understand. They don't live in our world clinically, working with people with aphasia, working with people with communication disorders. For some, it's that they've never been exposed to, and so there's a discomfort with the unknown. I think education is huge. Also inviting friends. If you're going to have a counseling session with a care partner, and a person with aphasia, and their loved one, would they like friends to be at that table? Ask them. They may not, they may want it just for them and to be quiet and personal, but they may have some really close friends that they know they're going to lean on and want to be there. Opening the opportunity to invite other individuals and also inviting friends to support groups. Bringing friends to support groups, I think, would also be a space where friends then can observe interactions among people with aphasia, as well as their loved ones, and can have an opportunity to interact with other people with aphasia. So those are a few things that I think we can do right now. There are through many of the different resources like ARC [Aphasia Recovery Connection], for example, there are opportunities for education, communication partner training, and those are things that we can also plug friends into
Janet: Those are some very good ideas, Lauren, very good ideas. You have also worked to address the isolation felt by people with aphasia, and severe acquired communication impairment through your lab’s Mission SPEAK program. Can you tell us more about this program, please?
Lauren: Absolutely. Mission SPEAK stands for Mission to Promote Socialization, Participation, Engagement, Advocacy and Kindness, for people with severe acquired communication disorders. This grew out of a lack of participation among some of our community members who had more severe communication impairments. They felt that they were just unable to be successful in a group setting, and tried some of the aphasia support groups, but didn't feel like they were being heard, or that they had equal opportunity, or were just frustrated by it. It didn't feel right for them. And so, I started thinking about, well, how can we provide an opportunity for individuals who feel this way, or maybe they're just more introverted which could be another piece to why they don't want that large group. How can we provide opportunities where they're still getting to practice communication in a safe space, develop friendships, and just be able to interact to combat those feelings of isolation that people with aphasia and other acquired communication disorders report. Mission SPEAK is a program where the students in my lab, both undergraduate and graduate students, some are CSD, some pre-med, some in their med programs, where they have the opportunity to meet with an individual with aphasia or another acquired communication disorder on a weekly basis to have a conversation. It’s all via Zoom. These meetings can take any shape that the person with aphasia or the communication impairment and the student want to go with it. We have some individuals that meet to actually practice what they're learning in therapy and so the clinician has connected with my students to say ‘Hey, can you go over this homework with them or allow them opportunities to practice’ and sometimes the clinician will hop on to Zoom as well. We also have opportunities such as one of my students and one of our friends with aphasia are reading a book together and so they do shared reading. In another pair we have a young man who really just needs interaction, so he meets with two different students, and they just have conversations over shared interests. Sometimes his mom is there to help support communication. We see as time goes on that as the individuals are getting more comfortable with each other, and the students are getting more comfortable, there are emerging areas where there are overlapping interests, or maybe the student is learning from the person with aphasia say, about sports, for example. We have one group where our friend with aphasia is a huge sports fanatic. He was meeting with two young women in our undergraduate program who knew very little about some of these sports and so he's taught them. It's really fun. Again, they meet at least once a week. We have one individual that at one point was meeting with three separate students three times a week. The friendships that form from these smaller groups are something special. For some of these folks it's intergenerational, for others they are peers. What you see is that the students don't want to give up this opportunity. I have some students who have been meeting with their friend with aphasia for over two years now. They've gone from their undergraduate programs through their graduate programs, and they've just developed a friendship and don't want to let go of it, which I think is phenomenal. This is something that I would like to see open up as chapters across different universities. Students want these interactions so badly and there are so many people with acquired communication disorders that need an outlet, and that would benefit from this safe space to work on their skills to just have fun. It really can be whatever they want it to be.
Janet: What a great idea. You've got my brain spinning. And I've been making notes about some clients I've been thinking about who would benefit from exactly what you're saying, just the opportunity to have an interaction and conversation. Wonderful.
Lauren, another avenue that you've been interested in is the practice of mindfulness, especially yoga practice. How do you see yoga practice supporting the LPAA philosophy of living well, with aphasia?
Lauren: Love this question. I have to backpedal just a little bit to answer it to say, I was never a yogi until I started my doctoral program. If you know me, I'm 5’11”. I'm tall and I grew up playing all the tall-person sports and pretty much was of the mindset that if you're not huffing and puffing and soaked in sweat, then it wasn't exercise or it wasn't beneficial. Well, I was wrong. In my doctoral program, I was dealing with imposter syndrome. I'm also a first-generation college student. Being at that level, and with all the different hurdles that a doctoral program offers, I was really feeling that imposter syndrome and anxiety that surrounds it. Somebody suggested starting yoga, and it's what got me out of bed in the morning, and really grounded me to face my day and feel as confident as I could in my skin during that time. After doing it for a few years, I just had this aha moment of, wow, I would love to bring this to the aphasia community. It's helped me with my anxieties and my areas of self-doubt and has just allowed me to also be present. I can only imagine for some folks with aphasia the anxiety that they may have surrounding communication, or just feeling okay with where they are in this part of their journey and that acceptance piece. Then I pushed it off. I said, well, I can't do that now I have to wait until I get tenure, I've got to focus on this very systematic treatment development program. I can't do more things.
Then in 2019 when I was an assistant professor, just my first year at UCF, I went to Project Bridge again thank you, Jackie Hinkley. While I was there, there was a small group that consisted of Dr. Amy Dietz and her friend with aphasia, Terry, who were at a table, and they were promoting yoga for aphasia. I was walking around, and I saw that table and I thought it was amazing. I went over there to have a conversation with them. Amy Dietz had just finished a small pilot project looking at methodology of how we make yoga accessible. And so I talked with Amy and I talked with her friend with aphasia, Terry, about their experience, and then more people started coming to that table; Susan Duncan, who is aphasiologist and a speech-language pathologist and a yoga practitioner, and then also a person with aphasia, Chase Rushlow and his mom, Deanna Rushlow. All the whole rest of that conference, we hung together, and started planning out the trajectory of how to bring accessible yoga to people with aphasia and to the aphasia community. Chase had experienced yoga, post stroke, and as a person living with aphasia with his mom, they shared their story about how it brought them together, and how it grounded him, how he found Zen. It was so fruitful being able to have these conversations with people with aphasia, and also their care partners, and them telling us what yoga has done for them. Not only did we all have our own experiences with yoga from myself, Amy and Susan, but then we also were getting this feedback from the rights holders, right from our patient stakeholders. And so this group moved forward.
Sorry, I had to backpedal there a little bit. Since that time, I'm so proud of what we have done as a team and what has unfolded. I was very fortunate to meet a yoga therapist named Karen Cornelius here in the Orlando area and together, we've been able to build an accessible adapted virtual yoga program for people with aphasia. It started as kind of this feasibility study with our own aphasia community group here in Orlando, getting feedback from them, figuring out how to make the language accessible, what visuals are helpful? What do people with aphasia want from a yoga practice, were there things that they liked, or things that they didn't like. We've had this really long but very informative process of delivering yoga from a yoga therapy perspective, caring experience, and then figuring out what to spend more time on and how to present things verbally and visually. Now I feel like we have this ongoing, strong, adapted yoga community that we're able to offer. We offer it every Friday at 11am. And we have participants from all over the US. We still have a strong group from Florida, from the Orlando area, but we've got people that participate from California, we've got folks from in the middle of the state, we've got people from Kentucky, we've got people from Pittsburgh, we have people from up north. And we also have a participant from Bermuda. It's amazing to see all of these individuals who would have never met each other otherwise come together so that they can have a yoga practice. For some of these folks, they participated in yoga before their stroke, and then had a really hard time getting back into it afterwards because of the language impairment, the language barrier really. Yoga is a very language heavy practice. The modifications that we've made have been really helpful in making it accessible. But then we've also brought in others that never looked at yoga before and experienced it for the first time and have heard their report that they reap the benefits of it. What we're seeing in both our qualitative research, and also in our quantitative research is that people are reporting reduced stress after participating in at least eight weeks of yoga, better sleep quality, and increased resilience. Some have discussed better pain management, so they feel like their pain, although it's not gone away, that they are able to go about their daily life without pain taking as much in terms of resources from them as it did prior. The biggest thing to I mean that sticks out is people are talking about self-acceptance. Yoga has helped them accept where they are right now in their journey. The last thing I'll say along these lines is there is something so powerful about having individuals come together in this group and there's conversation that happens at the beginning and at the end, just like you would if you walked into a yoga studio. I think it's that they're all working on a common goal, in this hour, and very little of what's being done is focused on communication, the effort is taken away. They're really just sharing a space with each other, enjoying that space, doing something that's making them feel good. And they're not having to think about their impairment. There's something really special with this group.
This work has now been funded by Orlando Health, which is our one of our big hospitals in the area. We're working with an interprofessional team and actually bringing yoga therapy into the inpatient rehabilitation program. This has been really neat, because Karen, the yoga therapist, and I are working with an interdisciplinary team of speech-language pathologists, physical therapists, occupational therapists, and recreational therapists. We'll have a group of individuals and all of these different professionals in the same room, and we're getting feedback from the professionals about what they like, what's facilitating this program for them, and what are the barriers. At the end, they will be the ones running this program, and they are very committed to keeping it up and running. We're also of course, getting the feedback from the people with aphasia and other brain injury survivors in this group, as well as their caregivers that are coming in and participating. I think now I can say I've done a good chunk of research in my life, and this area is the most fun and the least amount of work. Everything has happened organically. There has not been a moment where it feels like this really is work, or I don't want to do this. It's all just unfolded so beautifully. I feel so fortunate to be a part of this, I'm so thankful that Project Bridge pushed me into this, in a sense, when I thought I had to put it off for years and years to come. It's been a lot of fun. For our listeners, we have an ongoing yoga program on Friday mornings at 11 am EST, that is run by a yoga therapist who is amazing, and well versed in aphasia. I welcome people to join us.
Janet: I am moved by your story, Lauren, both your individual journey through your doctoral program and finding yoga to help your own self, and then taking that into the aphasia community. Several times you've used the phrase, ‘your journey through life’ or ‘your journey of life’. And isn't that true? We're all on a journey, and it changes year to year, or decade to decade, if you will. It's exciting to know that you're finding a way to connect people with aphasia to a larger community that focuses on yoga, for example, rather than focusing on the impairment that they have living with their aphasia. Thank you for that. It sounds like it's a great success, and I hope it will continue to be so good for you.
Lauren: Thank you.
Janet: Lauren, another area of investigation, you're examining the benefit of motor imagery and home practice, for enhancing treatment outcomes in persons with apraxia of speech. This is a little bit different from yoga and mindfulness. But yet at the same time, it's about what people can do in their own selves, I think to improve their communications and improve their interactions with others. Will you describe this work and your current findings, please?
Lauren: Absolutely. And you really did hit the nail on the head because it does overlap a lot. It's different in that we are working on the impairment here, but the motor imagery piece grew out of what I was seeing with yoga. Many of our participants have hemiparesis, for example, or they might have apraxia of speech or more severe aphasia. When they are unable to produce a certain movement, or unable to say a certain mantra, we tell them just to visualize. If you can't move that arm that is fine, or if you can't move it to the extent that you want to that is okay, just imagine that arm moving. Just imagine or hear yourself saying this affirmation.
Based on what we were doing with the yoga I started digging a little deeper into the research on motor imagery and mental imagery, and that's where this idea arose. Surprisingly, there hasn't been a whole lot of work using motor imagery for rehabilitation of apraxia of speech. There's been a little bit of work in the area of stuttering, and motor imagery is used significantly in sports medicine, athletic training for professional sports, and musical training, and also rehabilitation of limb and gait, but really very little about speech. And so, I found a hole. My thought was maybe this motor imagery piece is a start, it's something that people can do at home without much support, and maybe it will impact their performance, either that day or in a therapy session a few days later. I wrote a grant and it was funded through the National Institutes of Health. The grant focused on looking at the impact that motor imagery has when combined with behavioral speech treatment. My thought moving forward was that I got my Ph.D. not only because I wanted to know more and wanted to create treatment programs, but I wanted to prove to insurance that healing the brain post stroke, or rehabilitation of speech and language post stroke, is not the same as healing a broken bone. It takes a lot more time. It's ongoing. In my time, I have not seen a change in insurance. In fact, I think it's gotten worse. So my thought into this is we've got to give clinicians and people with communication impairments the opportunity to work more from home. What can they do on their own to bolster the impact of those few treatment settings that they actually are getting, if they are treatment seeking individuals. The idea is, the hope is, that through motor imagery, what we're doing is priming the neural network. Patients can go home with targeted stimuli that they're working on, for example, and just imagine themselves saying it accurately, thinking about how the articulators are moving, visualizing themselves being successful. Hopefully, we're priming those networks. Then when they go into that treatment session, those networks are primed and perhaps we see a boost in performance. The hope, the long-term goal, of this is to build a home practice program that can be accessible to people in the comfort of their homes, easily and free of charge. The speech-language pathologist can also interface with the program to put stimuli into it, for example, so that it can support what they're working on in therapy. We're still in the early phases, but we just completed our first qualitative interview after somebody has completed the whole program, and they really liked it. I thought people were going to be bored with motor imagery because we're not yet allowing them to say anything. In the motor imagery piece, we really want to focus on what does imagery add, but they really enjoyed it. Our first participant, what he said was that at first he didn't like it, he thought it was weird. After we went through practice for a few weeks, he would come into the therapy session and we would do a probe and afterwards if I commented that he did really well on that today, or in the treatment session itself, or if I was seeing a lot of success with certain targets, he would say ‘the homework, the homework’. My thought was that he felt like the homework is helping. He was encouraging and felt like it was helping. We've only run a few people through, so right now, it's preliminary findings, but what I'm seeing is a benefit when they are going home and having this opportunity to practice. Even though it's not verbal practice, it's motor imagery, I'm seeing a change when they come into the session. The study itself is funded for three years, and we have the opportunity to provide free therapy for 18 individuals with co-occurring apraxia of speech and aphasia. I'm excited to see what that group data look like, but right now, and with just the conversations that we're having with the folks that are coming through, I feel very optimistic about this program. It will definitely need to grow, I don't want it to be only motor imagery forever. It's a good first step.
Janet: That is very exciting to hear. I look forward to reading the results as you have more and more individuals with apraxia of speech move through your program.
Lauren, as we draw this interview to a close, I wonder if you have some lessons learned that you would share with our listeners, as well as some Monday morning practices, that is actions that we can take on Monday morning to improve our interactions with persons with the aphasia or apraxia of speech.
Lauren: So I think first, and this is reflecting on what I do, I know many individuals out there, whether you are clinically working with the population, or you're doing research, you're in an area where you are giving. We are giving to support a community. The same thing that I tell our caregivers is to do something for you first, that will allow you to continue to give to others. What is something can you identify, something every day. When there's a little bit of something that you can do for yourself that just fuels you to be the best clinician, the best researcher, the best partner, parent, the many hats that people wear, to your community. That may look different for everyone. For some people, maybe it is meditation, for others maybe it's yoga, maybe it's running, maybe it's baking, everybody has their thing, but identify that certain something that gives you the energy and maybe the groundedness to serve your community.
One thing we've touched on, and if you're listening to this podcast, you know this, but listen to our friends with aphasia. Their perspectives give us so much more than we could ever pretend to know. I've learned so much from my friends with aphasia, even moving forward and in my research - thinking that I know what people want, talk to them, and then the realization this actually isn't an issue, this other thing is. Seek better understanding, otherwise, we're going up the wrong ladder and putting our efforts in the wrong area.
Building community through shared interests, that's what I'm trying to do a bit, and also incorporate student involvement; use your resources. With Mission SPEAK we really are trying to build community through shared interests. It's really neat to see how this unfolds. Even when you have a person with a communication impairment or a person with aphasia, who is maybe 30 years older than the student that they're meeting with, there are shared interests. And it's so neat, what they learn from each other and how this partnership grows, and this friendship grows. Then you also have peers, folks who have acquired communication impairments that are close in age with our students, and that takes on a life of its own as well. Try to match people up based on shared interests, or at least having someone that is really eager to learn. Also being open. Building community through shared interests supports what we've done with yoga. Here are folks that are finding peace and community and enjoying this activity together. It could be anything doesn't have to be yoga.
One other is interdisciplinary practices. When we're thinking about our friends with aphasia, not just thinking about the aphasia or stroke, when we're working with our more acute care friends, or those that are still on that rehabilitation trajectory. Stroke Survivors are dealing with more than aphasia, and I think sometimes we can lose sight of that. Making sure that there is an interdisciplinary team or you're offering interdisciplinary supports, asking what else do they need. I find that I've learned so much from my colleagues in physical therapy and occupational therapy. I work closely with an assistive technology professional who has just unlocked for me the world of supports that are out there that help people live well with aphasia, and also with hemiparesis. Supports such as for cooking with hemiparesis, supports for a computer adapted need, supports many things, such as positioning, seating, getting out there and playing sports, again, in an adaptive community. There are so many things that have happened, I think, over the last decade to make things more accessible for people post stroke. Educate yourself on what's out there.
Janet: Those are great ideas. Thank you so very much. And thank you, Lauren, again for taking the time to speak with me today about the Tavistock Distinguished Scholar Award, and about your work in aphasia.
Lauren: Thank you very much for having me.
Janet: You are so welcome.
I would also like to thank our listeners for supporting Aphasia Access Conversations by listening to our podcasts. For references and resources mentioned in today's show, please see our show notes. They are available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, please email us at [email protected]. For Aphasia Access Conversations, I am Janet Patterson, and thank you again for your ongoing support of Aphasia Access.
Lauren, thank you for being with me today and congratulations on being named a Tavistock Distinguished Scholar on behalf of Aphasia Access and the Tavistock Trust. I look forward to learning about your future accomplishments, and seeing how you help people with aphasia and apraxia of speech on their journey of life.
References
Madden, E. B., Therrien, M., Bislick, L., Wallace, S. E., Goff-Albritton, R., Vilfort-Garces, A., Constantino, C. & Graven, L. (2023). Caregiving and friendship: Perspectives from care partners of people with aphasia. Topics in Language Disorders, 43(1), 57-75. https://doi.org/10.1097/TLD.0000000000000301
Therrien, M.C., Madden, E.B., Bislick, L. & Wallace, S.E. (2021). Aphasia and friendship: The role and perspectives of Speech-Language Pathologists. American Journal of Speech-Language Pathology, 30(5), 2228-2240. https://doi.org/10.1044/2021_AJSLP-20-00370
Resources
Aphasia Recovery Connection (ARC) https://aphasiarecoveryconnection.org
Aphasia and Related Conditions Research Lab and Mission SPEAK https://healthprofessions.ucf.edu/communication-sciences-disorders/aphasia-and-related-conditions-research-lab/
Project Bridge Project Bridge - Research Community in Communication Disorders
Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, and Thursday Night Poets.
I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.
I'm today's host for an episode that will feature three voices, one of a partner of an individual with primary progressive aphasia, CeCelia Zorn, who also happens to be a former professor in the department of nursing at the University of Wisconsin – Eau Claire; along with Tania Riske, an SLP at the Mayo Clinic Health Systems Eau Claire, and Nancy Petersen, a social worker with expertise in grief and bereavement from Ability KC in Kansas City. Each of them have both professional and personal experience and expertise with grief and loss. June is aphasia awareness month, so we wanted to take this opportunity to share the lived experience directly. Today’s episode will address grief, death, and loss: leaning into a much-needed discussion.
Biosketch:
Our first guest, CeCelia Zorn, Ph.D., met her husband Wayne in high school in rural northeastern Wisconsin. Wayne died from the consequences of primary progressive aphasia last August, 2023. Since that time, CeCelia has continued her work as an advocate for families living with primary progressive aphasia and more recently about grief, death, and loss as a care partner. Cecelia brings multiple perspectives to our conversation about grief, death, and loss. She is a registered nurse and a lifelong writer. She has been an award-winning university professor for 32 years. CeCelia reads voraciously, plays pickleball, and is relearning how to play the flute – taking individual lessons, playing in community bands and auditing university music history class. She volunteers at the local free clinic and is an active member of the Board of Directors for Wayne’s former memory choir. On a daily basis, CeCelia strives for a life enriched by kindness, joy, perseverance, curiosity, patience, and collaboration. But she will be the first to tell you, “some days are easy but some days you just crash. Yet everyday it counts because I remind myself, life isn’t waiting for the storm to pass it’s about learning to dance in the rain.”
Tania Riske, MS, CCC-SLP is a speech-language pathologist at Mayo Health Systems – Eau Claire. She initially entered the speech language pathology field through her volunteer work with the Chippewa Valley Aphasia Group and graduated from the University of Wisconsin – Eau Claire Communication Sciences and Disorders program. Currently, she serves as an adjunct faculty member at UW Eau Claire, teaching undergraduate courses such as anatomy and physiology of the speech and hearing mechanism. Tania continues to enjoy treating patients with aphasia and their families within the LPAA Paradigm. Developing plans of care, counseling individuals’ unique lifestyles, goals, interests, and priorities. Tania is an avid trail runner and equestrian.
CeCelia, Wayne, and Tania were my guests for Episode 49 – Primary Progressive Aphasia: A conversation with Wayne Zorn, CeCelia Zorn, and Tania Riske.
Nancy Petersen, MSW. Nancy grew up just outside Tulsa, OK and has an undergraduate degree in Speech Language Pathology from Oklahoma State University. She received a Master of Social Work from Jane Addams School of Social Work at the University of Illinois at Chicago, where she worked in urban hospitals and neighborhoods. Nancy is currently a Community Liaison for Ability KC, assisting patients as they transition from acute care to an intensive outpatient complex neuro-trauma rehab program. Her job also involves providing conferences and education to the medical and general Kansas City community. In her 30 years in the helping professions, she has learned much working in a variety of areas including nursing homes, hospice care, a suicide hotline, senior home care and case coordination. She has served on both the local and national Board of the Funeral Consumers Alliance providing education and advocacy relating to consumer protections in the funeral industry. Nancy is also involved with the Children’s Mercy Hospital Rare Disease Patient Family Advisory Council, as well as the Ethical, Legal, and Social Integration (ELSI) Committee for the CMH Genome Project. Nancy has been married to Jimmy for 24 years and has an 18-year-old son with a rare disease, 21-year-old daughter, a cat, a dog and many wonderful friends.
Take aways:
Interview Transcript:
Jerry Hoepner: let's just kind of settle into a conversation. I really appreciate having the 3 of you here together. I know you all fairly well, but having the lens of a speech language pathologist, the lens of a social worker, and the lens of someone with the lived experience themselves is just a great way to have a conversation about a complicated and challenging conversation sometimes one that maybe people want to avoid. So, I'm just excited to talk to all of you. I'm going to open it up on the front end with a really broad question. I want to be careful, you know. I don't want to make you relive moments and things like that, but I also know that you are here because you want to be advocates for teaching and conversations about death and dying and grieving, and all of those processes. So, wondering if the 3 of you are willing to share a little bit about your personal background and experiences with grief. CeCelia, go ahead.
CeCelia: Yup, yeah, I happy to start. Thanks, Jerry, for kind of pulling us all together. I really appreciate the opportunity to be part of the conversation. The thing that comes to mind when you pose that question is my family history around dying and grief and death and I'm so fortunate to have had that family experience. I think it was sort of a balance between the emotional side of dying and death, and the practical side of dying and death, and our family held both of those at the same time. It wasn't just the emotion, and it wasn't just the practical aspects, but it was sort of, I don't know, running down a river of white water with one foot in each canoe, and I remember specifically, at my dad's death bed. There were 7 of us kids, and we of course, mourned his passing and were extremely emotional about that, and stayed with him 24, 7 for 3 weeks, etc. Etc. And but at the same time we were talking about. Should we have spaghetti or ham at his funeral luncheon? So, sort of the practical aspects of how is this all gonna come together in a few weeks when we knew the funeral was coming? So, for me, that's a strength that has carried throughout my life. And I I just am so appreciative of that. And I can only speak to my experience. Perhaps other families have had similar experiences, or one versus the other, or neither. But I just wanted to sort of throw that out there. That sort of ability to handle both things sort of in the same at the same time, has been a source of strength for me.
Jerry Hoepner: Wow! Thanks for sharing that, CeCelia. And I'm not sure that that is the experience of a lot of people that ability to do that. I want to take a step back, and mention something I should have mentioned. CeCelia. You kind of wear a couple of different hats, so you were a nursing faculty member for many, many years you have that holistic care, nursing perspective on grief and death as well, and then you also wear that lived experience hat as well. If I can use that metaphor in dealing with your husband. Wayne's death related to primary progressive aphasia. So just so. Our audience is understanding those perspectives. I think that's important. And to go back to what you just said, everyone has a different experience, and I'm not sure that everyone does process those things in parallel.
Jerry Hoepner: Nancy, I'll invite you to share a little bit next.
Nancy Petersen: Well, I'd be happy to. So, background is I have a master's in social work from Jane Adams at University of Illinois, at Chicago my experiences over the time figuring out what I wanted to be when I grew up, and what I ended up doing where I worked at a suicide hotline. For 3 years. I then worked in hospice for a number of years, including pediatric hospice while kind of in my life. At the same time my father died when I was 20, very unexpectedly at 52. I have worked in kind of every different version of the helping profession and nursing homes and pediatric settings and am currently working in complex neuro trauma rehab I was on the National Board for the funeral Consumers alliance when all of a sudden, my son was diagnosed with a rare progressive, neurodegenerative disease, 6 years ago and we're dealing with what that means and what that looks like. What that does to a 13-year-old when they get diagnosed with something that will limit his life. And so have kind of truly become aware of the difference between someone who talks about life and things that people need to know and what how things should be in an academic way, and truly have learned what it feels like to live that you know, your parents are important, but kids are different. They hit different. And when you kind of start living that deeply, what I have learned becomes a lot closer to home, it just hits really close to home. So that's kind of my background. I did a lot of I wrote a section for Jerry's book about you know, one of the textbooks about death and dying, and what I believe about it. I'm kind of curious having not read it for a while. How my! Just how the changes in what has happened in my life. And Clark was sick then. So, it's not brand new, but even then kind of the differences of what happens over time when you're living kind of a situation like that. And I just looked at something. I wrote a while back a presentation called Death as a 5-letter word and it has some interesting things in it as well. So, I think the topic of death has no answers. And the talk of bereavement has no answers, and very often people who are bereave, who are bereaved, or who are getting ready to, who are bereaving before the death, want there to be. And I think that's one of the biggest, although obvious. When you stop and think about it, that's one of the biggest issues that you're going to run into families is they want an answer to make it better. And it's very hard to explain to people they have to live it. That's part of the problem, and the issue with grief is that you can't step around it. If you do, you'll find yourself in far worse situation than if you live through it. So, I think for caregivers or those around you. There's a lot more to say about what to do for someone or with someone who's experiencing it. So, I try to look at it from all the different perspectives to see what sometimes nonsense I can spout. That sounds intelligent, because truly it is such an individual, it is so utterly individual. And there aren't right ways and wrong ways. People think there's a good way or a bad way, or they think there's a right way. And what happens is what happens. And the biggest problem is making sure that you know when it's kind of out of hand or when you need external kick assistance. You need to understand how long it lasts. You need to understand what happens in that and that it's okay. So much of what's going to happen that feels difficult or feels odd or feels out of place is normal. And maybe that's our goal is to normalize people's reaction to it is to normalize their own personal journey as not being something. Then you have to compare to anyone else's.
Jerry Hoepner: Yeah, that's such an important point. And again, really emphasizes the fact that all 3 of you are experts with multiple lenses. And I guess everyone is at some point in their life. You know you. You bring your personal background to it, your professional background to it, and then your experiences with life and death and grieving, and all of those things. So, really, I mean, I think we're really fortunate to have this conversation with 3 individuals who have such a broad lens, and are able to view death and grieving from multiple lenses like you all are. Yeah, thank you for sharing that. Tania. I'll let you jump in next. If that's okay.
Tania Riske: Yeah, that'd be great. Well, as a clinician, I think I really first sort of became interested in and in investing in conversations about grief because I saw a lot of patients who were facing terrible diagnoses and care partners who are trying to figure out how to sort that out and not having the opportunity to do that. Your neurologist was maybe going to be interested in providing analysis and checking in with you every few months, and maybe adjusting your medications. Your primary care provider was keeping an eye on your blood pressure and your cholesterol. And there just really wasn't a person or a provider who was acknowledging that there was going to be partings happening, that this you know, that this might be a diagnosis that was going to lead. Brief or certainly significant life changes. So it wasn't being talked about. It wasn't being supported, and that really started to make me feel like there was a that was a gap that needed to be filled, the conversations that needed to be opened and had and continued, it wasn't just a one and done kind of conversation, using it to be ongoing conversations and support. And as things change, the conversation maybe changes a little bit, and the resources change. So, I became really interested in the role of speech, language, pathologists, and other providers also in supporting brief and just. Incidentally, as this became a bigger part of what I was thinking about and taking up more headspace for me and making me really think about how I was practicing and how it's impacting patients and families. Incidentally, I lost an adult child. So, I have some of my own grief that I'm dealing with as well, and you can hear that coming up me a little bit right now. But it really shapes how I think about grief and how it's impacting families, and what they might need, or what they might want. And when I was hearing Nancy talk about there being no real answers, and gosh! Families want answers so badly and helping them explore through their grief. And what's right for them and supporting that. And when CeCelia talks about that practical versus the emotional standpoint having one foot in each canoe. I don't think that's an experience that a lot of families have. I think that that's such a lovely perspective and strength that you have, CeCelia but I don't think a lot of other families have that. So as a clinician, investing in families and helping them to have those conversations and recognize that there's not right or wrong answers. But the questions are very fair and very valid, and just be able to support that in a way that feels authentic and feels genuine and caring, and not filled with trite comments and superficial responses. And let's move on from this because we've got other things to talk about, I think, is really important.
Jerry Hoepner: Yeah, thanks for sharing those perspectives. Tania. And one thing that I want to highlight for this particular podcast is, we're working with individuals with communication impairments who have maybe additional barriers to talking about death and dying. So, I mean beyond the challenges that we have with what that all of us have in everyday conversations about death and dying. That's just an additional layer. From the standpoint of sharing education with them, but also decision making and planning that becomes so much more challenging in that context.
Nancy Petersen: Well, and more importantly, it may isolate them even further from those around them who could support them, who were having enough trouble, just having regular conversations with them. And now we need to have a conversation that's frightens them, that they don't know how to do and I will never forget one of my that I just read said that people who are trying to support people need to remember they're not expected to be Yoda like you. You aren't. You don't have to have the answers, and we for some reason think that is such an important thing that if you talk to someone about something difficult. I said. If you know suddenly, if you someone you know, has cancer, you're supposed to be able to talk to them about cancer treatment. I mean, I don't. The people that helped me the most in the most difficult situations in my life have been the ones who said the least and I don't know why that is hard for people to grasp or be okay with. Hmm. I think part of it is that we are really bad at silence in general and we feel like everything has to be filled. And I am one of those people who, when I get anxious, I just talk more so when I'm being silent is a learned skill, and that is something that many of us is skilled. Many of us don't have.
Tania Riske: I think you're right on with that, Nancy. It's so hard to be quiet and listen and I think especially many of us who are in clinical or provider fields tend to feel like it is my job and my responsibility to try to fix this or make it better. But that's not true. But, boy, it's that's what we want to do.
Nancy Petersen: Right. Even I have put in that situation, and knowing, you know, it's kind of the same thing about having a sick child, I know the right thing to do but I don't. My emotions. I'm not always. I don't always react with my brain. So, you have to have a lot of self-talk to say. Now, remember, you don't have to know everything, and quiet is good, and they know their own answers, and even with a degree in speech, I mean my undergrad in speech, pathology, so I only know enough to be dangerous. But my I mean social work teaches you to let people find their own answers, and it's still so difficult to do in a really serious situation to not want to fix and to not want to help and it's hard to believe that help is less in situations such as serious grief.
CeCelia: And maybe it's not necessarily just sort of pure silence, but it might be reframing.
Nancy Petersen: Reflection. Yeah, I agree.
CeCelia: You know. Help me understand what you're thinking, or help me understand what you're feeling, rather than sort of tolerating the silencing. When this person is done talking. Then I can go on to some real things, but sort of reframing that silence in a new way might be helpful in some situations.
Nancy Petersen: Certainly, active listening is/can be good. I mean, it can be very helpful in many situations. What I kept getting was, what can I do? when I was in that situation, all I wanted to say was, if you can't make my dad well, there's nothing you can do, and it almost angered me that people would ask, What can I do? Because there was only one thing I needed done, and nobody could do it. So, you kinda I would much have preferred, and I did prefer my friends, who were very active listeners, or who sat and padded in my leg or my arm, you know, and you also have to kind of figure out. Are they in the middle of the death, like are they? Is the death actively occurring right then, in which case silence might be helpful. But then, when they want to talk about it. When someone wants to really talk which happens inner, you know, it's interspersed in all of that that reflection and active listening and reframing and making sure you understand what they're saying can be, I think, most helpful.
Tania Riske: Oftentimes I've really seen my role as inviting the conversation, opening the door and making it a safe space for that conversation. Even if a patient or family isn't ready to have a conversation about grief that either they're experiencing or they're anticipating they may be or they're going to experience in the future. To know that first of all, I'm acknowledging that, and then also really trying to create that safe space with an open door that we can go to that conversation and that this is this is an okay place to start thinking about what might be coming, what we're afraid of. So, I think starting the conversation early is also important.
Nancy Petersen: Well, and here's one of the we. I'm sorry, CeCelia, do you wanna.
CeCelia: I was just gonna sort of concur with you, Tania, in terms of, in addition to that sort of the idea of repetition and patience that it's not just a one-time shot. Okay, this happened on Tuesday, 3 weeks ago, and now I don't have the space to do that. But sort of the need to repeat that open door, and maybe I wasn't ready 3 weeks ago. But by God, I really need to do this again. So please be patient with me, and please repeat this opportunity. So, the idea of repetition and patience seems important.
Nancy Petersen: And one of the differences is, a lot of people don't always have a Tania that they see regularly in life to do this and what the thing that I have seen happen so many times is that the person who so …, we get a lot of rehab and we do what we do. But sometimes we'll get people who have glioblastomas, and they want rehab and I'm not sure the patient wants rehab and that yes, getting stronger is helpful. And yes, that gives them more energy. And maybe they just had a reception, and maybe they really can build up a little bit, but it's so much the families who are in denial that want them to get better, and they'll grasp. But any straw to try to make their need to understand and accept what's happening to put it off just a hair longer. And when I worked in hospice specifically we would walk in. They actually even took the word Hospice off our name tags because families were insistent that we not tell the patient they were dying. What was always most amusing was that the patient always knew they were dying and would ask me not to tell their family they were dying. So, the conversations that weren't getting put off were grief related, and fear of death related so intensely. Both desperate to protect the other member of their family, the other group and we did a lot of trying to get to the elephant in the room trying to get to the thing that everyone knew was happening. But people get there so differently that it's very difficult, as the social worker put in the middle of that pers that situation, to figure out who's ready or what their reactions gonna be. If we decide to talk about this and how to handle that reaction because we would get I mean, we changed our name tags. We got so many families angry that we were supposedly letting their dying loved one in on the little secret they were dying and instead of us saying, It's not a secret. The word. Hospice is not going to come as a great surprise to them. We just took it off.
Tania Riske: Wow! That's really interesting. I do see on a routine basis what you're talking about, where families do not want death dying hospice any of those words uttered around their loved ones, and sometimes vice versa, too, but almost always it's families protecting their loved one who is dying. But to take it to that extreme of. We can't even have this on a name Tag, because it's just saying too much angering. Too many people is really fascinating, and I think very telling about just our whole thought process around death dying and grief.
Nancy Petersen: Our death, denying culture. What do you possibly mean? Having worked in it, I literally would sit at a table at an exposition. You know, when we're trying to talk to people about Hospice, and people would literally go away from our table and around like Hospice was somehow catching.
Tania Riske: Wow.
Nancy Petersen: And say, I'm not dying. I don't. Don't talk to me about it, and like literally avoid and it would catch me. So I mean I just I was always amazed at the number of ways people would avoid talking about something. That's one of the very few things you must never. You can't avoid. No matter how far away you walk them from my table. What it does instead is make you ill prepared for when it does come. Hmm, okay.
CeCelia: Wonder if we need to reframe the language that we use to describe people's reaction. You know, thinking about the negativity associated with some of the labels. I'm just. I'm just thinking about the word denial and avoidance aren't very positive words in my book. And yet we continue to label people in denial and avoidance. And I wonder if we could think about the meaning of the language, and how that might help people I don't know. Just raising the question. I don't have any answers, but.
Nancy Petersen: Well, I think there's a part of me that says, if you soft pedal it, you're not doing them any favors now, that's my belief, and I have been in working with death and dying my whole life. So, I know that I'm not your average person, but I blame society. I blame the way we talk about things in advertisements, the way we talk about things on the news. We don't even use the word die. We don't use the word death. We don't use the word, you know. We come up with all these euphemisms of passed on or lost. I think personally, they are not benefiting us. I don't think so personally softening the language. Now, if I'm dealing with a family that can't handle what I'm not trying to force this sudden societal change down everyone's individual throat. But what I am saying is that in general we probably need to. You know, when you talk in different cultures about death. It's something they talk about constantly. When you look at, look at the native Americans. Death is part of the circle of life. It's what there is. And we talk about. You know, vitamin water like it's gonna be the Fountain of Youth, and we're never gonna have to die if we take enough pills that are vitamins, and we drink this magic water, and we Yoga or Pilates that we suddenly have this option and America is known for I mean, I went and studied Hospice in England, and they were vastly different in how they approach death and how they handled pediatric deaths. Jerry knows not to get me started about that. We literally act in this country. We do not let children die, we will not, no matter how much we know. That's we can't stop it, we will not people die. I saw a 95-year-old woman with advanced Alzheimer’s getting a feeding tube put in and I, who did not know where she was in the hospital. She was terrified. She didn't know what was happening. It was a horrible situation, and I thought, well, probably the best thing we need to do is put a lot of food in her that sounds like the best ending for this and it just the whole thing sums up our inability to understand that if we talked about it more we might have a better reaction to it when it was time because when I've been around hundreds of people who were actively dying. They're very comfortable talking about it and they're very. They're anxious to talk about what they want and what's meant things to them and what they want to hear, and I would have family. Say, mama, don't talk like that. I don't need to hear that. I can't hear you talk about you dying right now. Don't talk to me about things like that. We're going to go make dinner, and we're just going to have a great dinner together, and push back on the dying person's desire to speak their truth and their what they wanted to talk about at the end of their life. And that doesn't. That didn't work either.
Tania Riske: I agree with that, Nancy, that we are really a society, that life at all costs prolong life at all costs, and I hadn't thought about that before in light of the fact that maybe that is tied into sort of our belief system in our conversations or the conversations and the beliefs that we don't have about death dying and grief. That because we don't talk about it, it's not Ok to talk about it that facilitates that we must prolong life no matter the costs. Not thinking about quality of life but instead, thinking about prolongation of life, and those are 2 very different things.
Nancy Petersen: And I see it all the time I was with the family, Father had a massive stroke. Daughters adored him, wanted him at no matter what Dad needed to get better. And so, they were pushing it better, and the dad looked at me with aphasia after a massive stroke. And I'm doing all this talking about our program, and they're so excited. And he looked at me and said, Why. yeah.
Tania Riske: There it is!
Nancy Petersen: Wasn't long before they let him die. They stopped coming and pushing for all of this, because he knew that the kind of stroke he had had was not going to work well with Rehab, that he had had a massive stroke and did not want to live like that, but his family was absolutely unable to manage that until he finally, after months of coming here and pretending to get better and stronger for them. And that's the other thing is, you're trying not to be mean to the family that loves you so much. They don't want you to die. But you know, let's not even get into the amount of money we're spending in Medicare, keeping people alive who have no, who, if given the choice, would never choose to live like they were living. I guarantee you they would not. And we can get into the ethics of that. When I was in Hospice we had a 36 year old man who had a ventilator and we had a 92 year old woman who was unable to explain on a ventilator who didn't, couldn't talk. The 36-year-old, said, I want to die. I am of... I have no psychiatric illness. I am not. I cannot live on a ventilator. The rest of my life. I do not want this. I've done it for 2 years. I am not living this way. and people were horrified, would have nothing to do with taking this man off of ventilator, but had no issues, taking a woman who couldn't speak off of ventilator because of her age. Now she couldn't tell you if she wanted to die or not. But that was comfortable. But taking a 36-year-old, who could talk and make a conscious choice, was horrifying and I think that for me just summed up the way that we go, that we look at death and handle death, and think we somehow have some obligation to keep people alive or never, or the pain of discussing it needs to be prolonged. I don't know if it's life that needs to be prolonged. I don't. I don't know what that is, but it may be death in this culture is a failure. And it's framed that way in some of the words like lost the battle. Yep, yep, for sure. So, it's we do it like it's war.
Jerry Hoepner: How do we open that dialogue, Tania? I know you and I talked about the PLISIT model, and that as an opening for conversations. But what do you think all of you, in terms of how do we open that dialogue?
Nancy Petersen: I always. I'll open it with funerals. I don't know why it works sometimes, but funerals are a practical money situation. So, if you talk about funerals in a joking way, or in a kind of a, you know. By the way, we're all here at Thanksgiving. We've never talked about this. What do you want or not want? And if you can start a conversation with something that is less than so, you're going to die sometime. Why don't we talk about that instead, it's when you die. What do you want it to look like? And it feels less threatening. I think in many cases and it can start a conversation in a non, and I know it sounds weird to say funnels are non-threatening, but sort of a practical situation that people are always told to take care of their business before they need it. So, I don't know. I think sometimes jokes or humor, or practicality sometimes are less off putting.
Tania Riske: Well, and for me as a clinician. I have to be in a certain place of having built a certain amount of report before we can jump into that, you know. I don't have the sort of built in, automatic family dynamics that you might when you sit down at that Thanksgiving dinner. So, having some rapport, and really knowing a little bit more about the patient or and or their family and the relationships. But for me, I it really requires me to consciously be bold and not use the euphemisms, not just avoid and skirt around, but to really be bold and open. That conversation of first of all, acknowledging that in the case of a degenerative condition, that that is where we are heading, we are ultimately heading toward death and opening that door for conversation, about losses that are anticipated. And whether it's changes in what a person can and can't do physically, cognition, health, opening the door to those conversations and re, and making sure that I revisit that and going back to that PLISIT model where really sort of the first step in that is granting that permission to have the conversations. Maybe it's not today. Maybe it's not in a month. And frankly, with some families and patients, maybe it's never but always being intentional about opening the door and keeping the door open. How does that resonate, CeCelia? When you hear these sides of the conversations where we're thinking about it from that provider standpoint. And you are. You've had the lived experience. How does what we're saying resonate with you.
CeCelia: Right. I wonder if the idea of loss isn't just dying in death. In my experience, it was a lot of different loss for 9 years. So maybe framing the conversation around loss for Wayne's loss of speech and loss of cognition and loss of toiling abilities and loss of hygiene skills and how that evolved it's not just dying as loss, but it's a loss of everything over 10 years, and maybe I don't know. Maybe reframing that loss and not in not in terms of denial or avoidance. I still have issue with labeling people in that way. I don't think that fosters an acceptance. So, in addition to that, maybe reframing loss might be I think, was important to me.
Nancy Petersen: And I absolutely please don't think that I was speaking to you. I was speaking in general about the denial I, or avoidance of death, as a rule, to someone who is not in a situation of actively managing that or even thinking about it. I was talking in general to people that are out getting freebies off my table at an exhibit hall who don't even wanna start the conversation because it's something that isn't happening to them. The other thing I want to say to you is, there are other losses that you're experiencing, that I talk. I've always talked about the loss of the husband that you had until he got sick, the loss of the ability to travel with him, the loss of conversations that you would have. So it's not just the losses of him, which, of course, you worried for him and those losses, but also to understand what you were losing, what everyone was losing. And I say this to people sometimes when I say grief can happen any time and grief is something that we should look at. We're going through all the time. If you lose a job if you lose, you know your home, you know. I just moved from my big house to this small house that my son could navigate, and there was loss involved in that. Not being a choice I wanted to make, and that being forced upon us, and that being the house, we hope to be in forever. So, people experience losses constantly and I don't think we give that enough thought. We're in America. We just seem to go and go and go. We're on the move forward wherever that is, and we don't. Maybe part of this is that we don't. We're not introspective all the time about loss and about, you know, when I talk to family sometimes, it's they haven't even sort of. They haven't put towards the losses that they've experienced. And those are losses, you know. That's not. Did you lose him when they died? But those are true losses. I once had to do a thing. I was gonna volunteer with Aids patients, and they gave us all these slips of paper with, we had to write down the 5 most important, you know who's the most important person in your life. What's your favorite hobby? And then they would make us take these pieces of paper and choose which piece of paper to remove from our pile, and that was gut wrenching, and all I was doing was wading up a piece of paper, so that just that activity was very hard, and made it so clear what losing parts of your life to a disease or to a situation could cause so please don't believe that I believe people that are in that situation are in denial in that respect, or that we should use that as a negative talk just that I think we live in death denial as a culture with the way we kind of act like. It's not a part of you know. We can show all kinds of medicine on TV. But if you put anything on there about a funeral or someone dying, people push back hard. We just have a problem with it.
Jerry Hoepner: Yeah, so kind of related to your example of people walking around your booth to not get to not catch Hospice. Yeah. But the other thing I'm thinking about. Nancy, as you were describing. Some of those losses. I don't think people always recognize them as losses. Just to have a conversation about changes. That you've experienced like. For example, when you said the loss of you know your larger home for a smaller home that your son could navigate. I think some people would recognize that as a change until they really think about. I loved that old house I mean, I loved it, and just opening up that dialogue might be an important piece of that conversation, too.
Tania Riske: A conversation that I'm having more often is conversations with patients and families, too, about loss of identity. And I think that ties into the same idea where, if your identity was, you know, I'm gonna I'm gonna live in this house with my healthy family. And you know, we're gonna do these activities. And we're gonna take these trips and and we're going to. And this is who I am and the vision that I have when that vision changes. I think there's a real loss of who am I? What does my future look like? What does this mean? And that I think that loss of identity is a really big, a really big deal, too, that we really need to support.
Nancy Petersen: And we see a lot of men. And it's not only men, but we see a lot of men who, if they can't go back to their job. They've identified themselves as the breadwinner, or the a lawyer, or whatever it might be, and just that loss is almost. I mean, they think about it as a kind of death that they suddenly, you know nobody wants to be a burden, so everyone thinks of themselves as that. But when they lose their ability to do the thing that that made them who they were in their mind. We don't talk a lot about that we talk about. Well wouldn't get you. So, security disability. And, you know, like, money's gonna solve that problem. And now you can stay at home and watch TV. You don't like and not go golf anymore with your friends, and probably not be a part of those conversations that all your guys are having at poker, because you're not going anymore. Because you have. You know, you have aphasia. So you are absolutely right. And that's why I think that and why I was big about everybody who has a part of their life, who has a piece of that person, whether it's in rehab. And they're doing speech, pathology, or PT, and they're talking about it should be comfortable with having those harder discussions than you know. How about them chiefs, or whatever it is that you can have. Once well, here, you can have it a lot we win, but you know. But you know what I mean. Like you can. You need to have a conversation that gets a little deeper. Maybe you should feel comfortable having that come. Maybe you could do somebody more good if you were comfortable with that.
Jerry Hoepner: Yeah. And I'm still glad you broaden the conversation to thinking about loss, not just as death and bereavement, but thinking about the application to everyone that we're working with in terms of, you know, people living with aphasia regardless of whether that's a degenerative aphasia or whether that is a stroke-based aphasia. There's a tremendous amount of loss and change, and even being able to have a conversation about that change, to be able to say those changes sound a lot like loss. I think that's an important piece of this conversation, too.
Tania Riske: Over the years that I knew Wayne and CeCelia. I really had this, I think it was a very unique and awesome experience of seeing a partnership that works so well together to support identity. Even as Wayne went through changes with his primary, progressive aphasia. How they worked together and brought me into those conversations about, how do we continue to support Wayne, but also to support CeCelia as a partner and caregiver? And I think that's a part of a conversation that very often is overlooked by providers kind of circling back to when we first started this conversation. But about how do we support people as they're going through losses that affect their identity, that affect their physical health, their emotional health, their cognitive health? How do we support families, patients, loved ones. And I had the pleasure of just really seeing a phenomenal example of that. And that's not a support system that everyone has. How do we facilitate that.
Jerry Hoepner: To me it feels like. It's not a support system until you open that door. Go ahead, CeCelia.
CeCelia: I was just listening. Thank you, Tania.
Jerry Hoepner: Gotcha, I mean, I feel like in this situation. Tania. You made it possible for some of those conversations to be initiated. I'd be interested in CeCelia's perspective about what it took, what kinds of doors were open for that conversation? Was that something that was initiated from only Tania? Or was it initiated in both directions? What are your thoughts on that.
CeCelia: It certainly was Tania and per the other speech therapy colleagues, and the aphasia community and some friends and some family. I think one question that I heard that was or comment, and I heard it several times over the course of the years was being asked like, what are you experiencing, or what are you hearing other people say? That's painful for you and sort of letting that guide the conversation when people said such and such that was really painful. But when people said other things that you might think would be horrible, it wasn't horrible at all. So maybe kind of looking at, or listening, or asking for, What are people telling you? That's painful? I don't know if that sort of addresses your question, Jerry.
Jerry Hoepner: Yeah, I think so in terms of initiating those conversations about. you know what's happening in your world. And how are you responding to that it actually made me wonder to what extent was Wayne a part of those conversations. To what extent was he involved in that process, especially early on.
CeCelia: Well, Wayne wasn't a real chatty guy, but of course, in my heart of hearts I I you know, being married, and so on for decades. I knew what was painful for him, even though he wasn't able to say it, and I knew what was supportive to him. So, from Wayne's perspective, he would never have. It just wasn't part of him to say, well, this is really a crack of crap sort of a thing, you know. He just wouldn't say that so it hang out.
Jerry Hoepner: Was it helpful for him to be there when you were having these conversations with Tania.
CeCelia: Oh, absolutely just because of the inclusion of the 3 of us you know, and Tania was so skilled in in pulling out a picture off his iPad or whatever, and it wasn't just a picture of him golfing, but it was digging deeper around his golfing, for example. So, it was a springboard for conversation. That Tania would just do over and over and over again, and of course Wayne saw it as golfing, and the fact that oh, he wasn't really golfing 18 holes anymore. And he wasn't, you know, golfing a 92 or an 88, or whatever. And Tania's questions about so what's a birdie, and what's a bogey? And you know Wayne wanted to be helpful at all that. But of course it opened up a whole door of conversation from Tania's professional position in what was happening with his identity. It ends, it.
Jerry Hoepner: Go ahead, Tania.
Tania Riske: I was gonna say, thank you for really highlighting that, CeCelia, because that was. I guess how I learned so much about Wayne. So, I felt like I could help to better support his identity. So when I, when we were talking about pictures, that was my favorite, because I could see such a peek into what? Who he was? Which was so much better than if I would have brought in, you know, some pre created or commercial therapy products that told me really nothing about Wayne. So that was really something that was just such a great tool. But tool is such an inadequate word for that. It was just. It worked so well for me to learn about Wayne and for Wayne to be able to school me a little bit, too. Sometimes.
CeCelia: And it's just an example, I think, of starting where the person in the family are at in in the pictures. Of course, that was, as you said, tool, or whatever it's called. It was like this is who Wayne is, and this is his life. It's like what's painful for him and for me and for us together. So, it was. It was the foundation that guided the discussion, and not something you know, sort of external, that that was sort of put upon us. If you will.
Jerry Hoepner: Maybe this is a good time. I jotted a question down as we were talking from a life participation approach to aphasia. Why is it so important that people have this conversation, or that this is a part of our conversations about loss and grief and death and dying? Why is that such an important piece of the life participation approach.
CeCelia: I don't know 1 one aspect that I thought about when you asked that, Jerry. It's of course going through the process, and the process never ends of dying and death. It never ends but it's so. It's sort of the day to day, but it's also sort of the memory of that. Now, when I look back 8 months later, I I those are the good things that I have. Those are the times in the bottle that I will keep forever and ever and ever. So, it's not just. Oh! Wayne was discharged. Wayne died on August 20, fifth, etc., etc. It's like, Oh, that that's been my life. So, it's that time in a bottle idea of, you know, one can go with Jim Croce idea.
Jerry Hoepner: Yeah. And I think that alone is powerful, that I think some clinicians might feel like, Oh, don't even touch that time in a bottle, because that's sad when you really frame that time in a bottle as something really positive and meaningful for you. And I think that's a really good reframe on the entire lens, of talking about loss and death, and dying.
Tania Riske: I feel like so much of that life participation model is also about honoring identity, honoring wishes. Honoring people as individuals, not as impaired patients who we must fix. But instead, as people with lives and dreams, and some of those dreams have just been shattered or maybe they were shattered years ago. But yet they are. These are people with identities who matter as individuals and really honoring that. And I think that's another reason these conversations are important to honor the fact that yes, there will be death, and we want to do kind of right by you and by your family and loved ones with how we approach that and also recognizing these losses that we've been talking about, now honoring those and not just throwing them away, but doing our best to continue to really celebrate honor, embrace individuals and grief anticipating grief. Bosses is all part of that.
Nancy Petersen: So, I just have a question because you're typically talking about people who have a progressive situation so that it.
Tania Riske: That's true. That's where my lens is a little bit focused right now. But yeah.
Nancy Petersen: And so that would be an I don't want to say obvious, but a wise choice to add to those conversations. I wonder if it, I think it needs to be a conversation that's in any in any sort of situation where there has been loss. Even if it's someone who's trying to rehabilitate from a stroke like we talked about, or someone who doesn't have the path of degenerative situations. But maybe that whole thing about how we have a difficult time with loss or recognizing loss would be beneficial, because we would be in a better position when other losses occurred. In other words, that it would make believing, understanding, discussing, recognizing loss in many situations would help us. What happened with what happens when those final losses start to occur. Because I just don't think we look at Change. We try to put a positive spin on change, and there's nothing wrong with coming up with the good reasons for that change, but that we don't recognize the loss that comes with those changes, you know. Yay, Daddy got a new job in a new city, and we're leaving. And then you hear we're having trouble with the teenager, because you know, I know it's hard for her, and we're changing schools and all of this. But if you don't then recognize per loss, even if to you it seems like a lesser concern than the other things that are going on that you're telling people that those losses don't count, or that that emotion isn't important and I'm just thinking about our speech pathologists and the opportunities that they have, or that opportunities any speech pathologist would have after an event or a health event to make to make it more than just, you know. Let's talk about Bill, and how you know our story today, or whatever it is that they're doing. That's sort of the more traditional speech pathology like you mentioned Tania, the typical structured speech pathology session that they would have.
Tania Riske: Nancy, that makes me so happy that you kind of bring that up, because that's something. CeCelia and I have had extensive conversations about and that I get really all worked up and excited about is really the role of speech pathologists in counseling in general, you know. Yeah, maybe it is more at times focused on grief. Maybe it's identity other times. But just that whole idea of there is lots and I think speech pathologists have a huge role in acknowledging that supporting that you know, there's lots of conversation going on right now about what kind of education do we need to provide for a speech pathologist to better enable them to counsel and counsel well, and still staying within our scope of practice. Of course, our very respectful boundaries.
Nancy Petersen: Absolutely. I can tell you, I can tell you there's very little even in doctor schooling. Oh, I believe they don't get any. They just nobody gets this. So, I love Jerry's been doing and what you're doing. It's just if you have an hour with a person who's coming out of some sort of crisis or medical situation. Why not use it in a way that's beneficial in a larger scope than just working on your t's, or whatever it might be.
Jerry Hoepner: Yeah. And this has just been such a fantastic conversation. And I think you've done a really nice job of tying things together in terms of the life participation approach. I mean, if I just take a step back and kind of summarize our conversation, part of what makes an effective interaction is not avoiding those difficult conversations, but leaning into them, asking the questions, creating that safe space, as Tania said, for the conversation, giving permission to discuss those tricky topics. And then just actively listening, beginning where the family and that that individual are at. So, I hopefully, I've some summarized those things. Well, any missing elements that we should discuss before we bring this great conversation to a close.
Nancy Petersen: I just appreciate you guys, I don't know the 3 of you that well, and I'm trying not to. I get very excited. And on my soapbox about things that I've witnessed, and things I think we could do better. So, I just want to apologize if I don't know the kind of the framework. But I certainly learned a lot and appreciate very much what you all shared today. So, thank you for that.
Tania Riske: I really enjoyed having conversation about things that are so often really kind of dismissed, or nobody wants to talk about that, Nancy. I really appreciated your frankness. I you know your honesty, and just putting out there the things that we tend to be so uncomfortable about. And I think you're so right that these conversations need to happen. And they need to happen outside of the traditional of this context that we're talking about where people are looking down the barrel at loss but also they need to happen at the Thanksgiving table. And now those they just those conversations are so valuable. But yet we do such a stellar job at not having them. So. Thanks for talking about that.
Nancy Petersen: No problem. Thank you.
Tania Riske: And, CeCelia, I'm always so appreciative and grateful for your willingness to be so vulnerable and to really put so much out there about your lived experience.
CeCelia: Thank you.
Jerry Hoepner: Well, I want to thank you all for having this conversation. It feels like we could talk for another day, but we'll bring it to a close, for now. Thank you all, and I look forward to more conversations in the future.
Tania Riske: Thanks. Jerry.
Nancy Petersen: Bye, Jerry.
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.
Dr. Janet Patterson: Welcome to this Aphasia Access Aphasia Conversations Podcast, a series of conversations about aphasia, the LPAA model, and aphasia programs that follow this model. My name is Janet Patterson. I am a Research Speech-Language Pathologist at the VA Northern California Healthcare System in Martinez, California, and a member of the Aphasia Access Conversations Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their efforts in engaging with persons with aphasia and their families through a variety of educational materials and resources. I am the host for our episode that will feature Robin Pollens, in which you will hear about the transformative power of mentoring. These Show Notes accompany the conversation with Robin but are not a verbatim transcript.
In this episode you will hear about:
1. the presentation of the Aphasia Access, Sandra O. Glista Excellence in Mentoring award to Robin Pollens,
2. stories about mentoring from Robin’s career as a speech-language pathologist, and
3. the power of a mentoring relationship to affect the relationship with people whom you mentor, from whom you receive mentoring, and with whom you share mentoring opportunities.
I am delighted to be speaking with my dear friend and longtime LPAA colleague, Robin Pollens. Robin is an ASHA certified speech language pathologist and held the positions of adjunct assistant professor in the Department of Speech, Language and Hearing Sciences at Western Michigan University, and clinical supervisor and coordinator in the Aphasia Communication Enhancement program. She also provided clinical speech-language pathology services through home health, and skilled nursing outpatient clinics.
In addition to her focus on LPAA, Robin is passionate about graduate education in speech-language pathology, palliative care, interprofessional collaboration and ethics, and has written and lectured nationally and internationally on these topics.
In 2023 Robin was awarded the Sandra O. Glista Excellence in Mentoring award from Aphasia Access. 2023 marks the inaugural award given to both Robin and Leora Cherney from the Shirley Ryan Ability Lab in Chicago. The “Sandy” is awarded by Aphasia Access and recognizes an exceptional mentor who has demonstrated unwavering commitment, unparalleled guidance, and profound impact on the professional and personal development of others working in the aphasia community. The award is named in honor of Sandy Glista, one of the founders of Aphasia Access, and is a testament to her enduring legacy, and a reminder of the transformative power of mentorship.
Welcome Robin, to this edition of Aphasia Access conversations.
Ms. Robin Pollens: Janet, thank you. Thank you so much for all that intro, and it's nice to be here to talk with you today. I want to also right now, thank Aphasia Access for this honor. It was especially meaningful, towards the end of my career, to receive a mentorship award and to hope there's something that I did, or I said, or I wrote over the years that was meaningful to somebody else. I also appreciate that I'm sharing this inaugural award with a wonderful friend, Leora Cherney, and that this award is named for my close friend and collaborative partner, Sandra Glista. It's a real honor to have received it and an honor to talk with you today, Janet.
Janet: The feeling is mutual about talking with you, Robin, and the honor is certainly well deserved. Robin, as I mentioned earlier, you were honored with the Sandra O. Glista Excellence in Mentoring award. This award recognizes your commitment to mentoring individuals who are part of the aphasia community, including clinicians, researchers, persons with aphasia, and their care partners, students and others. Through Sandy Glista and this award, we are reminded of the transformative power of mentoring.
Robin, how do you envision the value of mentoring to individuals and to the Aphasia community?
Robin: When I received this award, it set me on the road to reminiscence. I remember being in, I think, undergrad, studying Speech and Hearing Sciences and I had not yet done any clinical work. I had the opportunity to sit and observe a grad student doing an aphasia assessment with a patient. I was sitting behind this two-way mirror and I'm watching, and my mind is going, “okay, she holds up this card; and then she writes something down; and then she has someone point.” That's what my mind was doing. Sitting behind the two-way mirror with me happened to be a visiting professor from Australia named Anne. She turned to me and said, “Look at all of that empathy”. And I went, in my mind, “Empathy, what does that have to do with it?” Then I looked through the mirror, and I saw that this grad student was talking softly and looking kindly in her eyes, and kind of patting the client when she got frustrated. I thought, “Oh, I guess that's part of this.” So I'm thankful for her (Anne) and I feel like she was my first mentor. She only said one sentence to me, but it set me on a path for what it means to be an SLP. I know that recently, like in the last five years, there's been more discussion in our field about the importance of counseling, and mental health and people with aphasia. When I would be watching a grad student doing therapy, and I'm supervising, sometimes I would see them having what I would call a counseling moment. I would make sure to let them know later, saying perhaps, “I saw when the patient was frustrated, you stopped the task and you talked with them kindly. They told you about some things that were happening, and you gave an empathic comment.” This is the way that I think about mentoring, that it's a pathway to learning or growth that comes out of your own experience, and then it goes on to others and recreates. I can go on and on with stories.
Janet: Please do tell stories, Robin, because I'm fascinated by stories. I have another question though, Robin, as you continue to tell me your stories, you've led right into the question that's on my mind. People may think of mentoring as one way, such as the experience that you had sitting behind the mirror and watching the graduate student. I see mentoring as an interactive relationship that goes multiple ways. I would love to hear more of your stories and learn about your thoughts about interactive mentorship. Does that make sense to you?
Robin: Yes, I do like that framework that you just said, Janet. And when I knew I was going to be doing this discussion with you today, of course, I went online, and I looked up mentoring to see what kind of definitions I might find. I actually found a website that I liked; it was Art of Mentoring. The definition for mentor they used was a coach, a connector, or even a challenger to help their mentees reach their full potential. The mentee will lead the relationship, inviting the mentor into their own inner dialogue to assist in working through, and I really liked that. I think that's ideally how the relationship can work. So, for example, when I was supervising the students in the ACE program, when it got to be in the middle of the semester, we would have a midterm conference and I would always say, “Tell me about your goals for yourself for the rest of this semester, how would you like me to help you?” The answers were so varied, there were some people that were very focused on the clinical learning tasks, they might say something like, I'm having trouble being in the conversation and keeping track of data, or this patient's talking so much, I don't know how to navigate the session to get everyone involved. So, there were clinical skills. Whereas there were other people that would say something like, I get so anxious before the session, I'm so nervous, it takes me a while after I met it to really be able to focus on what's happening. Those are two very different kinds of goals, and I wouldn't have known as their supervisor and mentor for that situation if I hadn't asked, and if they hadn't, let me know. So, I do think that that's important. I also think sometimes we have to seek out our own mentors; that's part of the relationship. In the beginning of my career when I was in my clinical fellowship year, I didn't have one of these strong clinical fellowship, amazing experiences that some people did, I was in a public school, and I had someone who was my supervisor. During that time, I was able to get a position in a different city, working in the hospitals, and another supervisor agreed to keep following me as the supervisor. In the hospital, I had some new patients that had had injuries, and I wasn't sure what to do. My supervisor didn't know anything about that, and I ended up going to a conference in Braintree, Massachusetts, and they were talking about this new thing called Rancho Los Amigos Scale, and I learned about it and brought it back. Sometimes throughout our careers, I think you need to actively seek out a mentor. I think I remember that Aphasia Access started a program where if you wanted to be a mentor, or you have a mentor, you can let them know; I think that's great, because there's always things that go on as your career continues that you may want to get some guidance for.
Janet: What I'm hearing you say, Robin, if I can paraphrase your words, is as an individual, a good thing is for one to be open to mentoring opportunities, whether you provide them or acknowledge them, when you see a student or a colleague performing in an empathetic manner, or for your own self seeking out someone to give you assistance. The mentoring could be a large role, such as in a CFY, or a lengthy one such as a two- or three-year relationship, or it could be a very short-term kind of mentorship. This seems to me to be what you're saying, make yourself open to learning and interacting with all sorts of people, because they can have an influence on your life, and presumably, you on theirs as well.
Robin: You summarized that great Janet. Yes, and I know that when I was working in home care quite a long time ago, I remember feeling in awe of the family members, the amount of care and the total concern, and they modified their life to care for their loved one. All of a sudden, I remember that feeling, and then fast forward two decades later, when some of my family members had illness, and I was in that role. I was drawing upon what I learned from them, which in turn, I share with our families of the people with aphasia when they're having medical situations. So hopefully, we're just all doing this for each other, throughout our lives.
Janet: What's the phrase “together, we're more powerful”, that's not it exactly, but our thinking together and the little pieces of information about mentorship or actions about mentorship, that you can recall from 15 or 20 years ago, that can help you today, are just as important as the word someone says to you this afternoon, about how you can be a better clinician, or you can give guidance to someone who is seeking it from you. Exactly.
Robin, in your position at Western Michigan University, I know you have mentored numerous students, and we could probably talk for months or years about wonderful stories. Some of them, most of them, I'm sure are successful, but there probably were a few that were less successful mentorship relationships. I know that you've mentored students, what I'm interested in learning from you is have you also mentored persons with aphasia or their care partners?
Robin: Yes, and I think there are different ways to mentor somebody with aphasia. I think the piece of it I'm going to pick up on has to do with helping them express their identity, helping them to reach their level. And again, I think for me, the roots of it came actually long before I knew about Life Participation Approach to Aphasia, it wasn't really articulated yet. I remember working in home care with a woman in her 40s. She had her stroke, and she had severe aphasia. But also, all of a sudden, she could no longer work as a crossing guard. That was her work, as a crossing guard for the elementary school. She also was no longer part of her caring circle at church, she was the one that greeted people, and sent get-well cards. I think that one really struck me because I was also on the caring circle at my temple. So, we ended up in therapy focusing on reading and writing, but in the context of being able to write sympathy or get-well cards. She made a dictionary of phrases you could write and things like that. So, fast forward to being in the ACE program, which was created by myself and Sandra Glista, to be a place where goals were addressed, not only the impairment level, but also the participation level, and there's certainly countless examples there I can think of, even from way back in the beginning, because it's in the article that we wrote. There was an organization in our city called Senior Corps, and it's actually in many states still. We trained some of the volunteers to communicate with people with aphasia, and then matched them with some of our people with something they wanted to do. So, one of the people ended up being, with his conversation partner, part of a bowling league, an accessible bowling league. He was young, he'd always been in sports, and he was just sitting home so that was his identity. Another person was matched with a woman who ended up going into a first-grade art class in elementary school once a week and helping out in that art program with her conversation partner. So, these were things that we started saying, we're working on communication, but we're also in some way guiding them towards a meaningful and participatory life. So that's one way, I hope that I've been a mentor for some people with aphasia.
Janet: I bet you have been a mentor for a lot of people with aphasia, because I can just visualize you thinking, and tapping into all the information from your former mentors, as you try to find ways to help an individual with aphasia, and his or her care partner or friend, take that step to being able to do whatever it is that they'd like to do, as well as they can possibly do it. I'm glad that you've had all these mentoring opportunities, and I think you're a leader in this field.
Robin: Thank you, Janet. I'd also say I think a way to be a mentor with someone with aphasia is also just having an authentic relationship with them, when their communication changes so much and people don't know how to communicate with them, and they don't know how to communicate with others. Being someone that they know they can talk with, they can relate with and laugh with, I think that in and of itself is a valuable way for interacting with somebody who has a sudden change in their communication.
Janet: You're talking about accepting someone for who they are, meeting them where they are, and together, you have a relationship that is built on trust, so that that individual would be more willing to accept from you, ideas that you suggest. They may be wacky ideas at the moment, but they certainly work in the long run. That relationship helps you both accept information from each other. I'm really curious, you've told us several stories about mentoring, and we'd love to hear many, many more. Can you think of a favorite mentoring experience you've had in some part of your career? Tell us one about one of those.
Robin: Sure, I'll name the one that I just got to go through. That was mentoring the next coordinator of the Aphasia communication Enhancement Program, which is Alison Mezcal. I had the great pleasure to stay for a semester while she was there, and we were able to do all of the coordinating. I already knew that she was a great clinician, she already knew the ACE program, she had been our student 10 years before. But the coordination piece, which is scheduling, and contacting people and planning, and all that would be new. So, we got to do it together over the semester and that was so satisfying to be able to do that. I also literally cleaned out the office and all the files and all the things so that it was ready for the next person. I know many people don't get to leave their position with the opportunity to do that, to directly mentor the next person, and it was a great pleasure.
Janet, on the mentoring website, they talked about their logo, and it was two geese flying in, here's what they said, “The geese at the front of the flock improve the aerodynamics to make it easier for the followers to fly; the geese at the back honk to encourage the front geese to keep pushing forward.” And they are constantly shifting position, meaning the mentor could be leading from behind or in front, and sometimes just flying alongside. And that's what I had the opportunity to do with Allison. So that was a great pleasure.
Janet: That was a great story, Robin. I just imagine the warmth it brought to your heart as you watch this living thing that you and Sandy created many years ago, move on to the next generation. But you know, I thought about something else, too, that this is part of, I think, what might be thoughts that a mentor has to consider. So, you've invested a lot in your ACE program, quite a bit over the years, and your heart and soul are in that, and you have mentored the next generation beautifully. But now you have to step aside. The next generation may have different ideas or may take it in a slightly different way, or may do things that you never even thought about. So, part of what a mentor has to do I would imagine, is also take a deep breath and know that you've done the best job you can. But then step aside and maybe your job now is to be at the back of that flock of geese and keep honking as the program moves forward under a new leader and a new director.
Robin: Excellent. Yes, and that's very fun. I have great confidence and hope, and in a couple of weeks Alison and I are meeting for coffee, and I want to sit back and just hear all about the things that she's creating.
Janet: That's wonderful. You are indeed a wonderful mentor, Robin, you've been a great mentor to me over the years, sometimes you knew it, sometimes you didn't, as a result of the conversations we've had, and through the different projects that we've done over the years.
Let me turn to a slightly different topic now. We've mentioned this a couple of times already, that for many years you worked with Sandy Glista, who is a dear friend to both of us. I believe that being honored through this award, receiving the “Sandy”, it must bring warm thoughts of your days working together. Please tell our listeners about how Sandy's friendship and collegiality have influenced you during your career.
Robin: I would say in the beginning, which would be the late 1990s, I'd say Sandy initially was a mentor, the kind of mentor that many people spoke about. In this regard, she was a connector, she connected people together. Well, she connected me to you, Janet, when you and myself and Ellen and Glenn did a project years ago on Cybersafety for people with aphasia.
I was doing homecare and Sandy was working on a project with keeping elders communicating. She invited me to be involved in this project and start having some Western students intern with me. Then she invited me to do a presentation on a topic she was starting out investigating, interprofessional education, which was a new thing. We were in a college, and we had OT and social work and all the different disciplines together. They did a presentation, I brought in my team, my home care, OT PT, social work team, and we proudly presented a case. It was after that, that she was going to be going on sabbatical and she asked me if I would take her place in working with people with aphasia at Western, and that's when I began actually working at Western, in 2002. Once she came back, we started talking, and creating and planning this new version of an aphasia program and for a couple of decades, we were collaborative partners. We would add to each other, fit to each other, enjoy being together, and have a wonderful creative experience, creating these ideas that we had and seeing them happen. If we did anything such as write something or present something, it was always Sandy Glista and Robin Pollens, or Robin Pollens and Sandy Glista, whether they were even present or not, because the ideas germinated from both of us. So, if you ever have the opportunity to have a work relationship like that, it's a real gift.
Janet: Our listeners can hear, I hope, the joy in your voice, as you're talking about that relationship you had with Sandy. I know that was a very special relationship for the two of you. I can see because I'm looking at your face right now, I can see the joy in your face. Recalling the close times and close work that you and Sandy had together, I'm sure that there were some disagreements or seeing things from different perspectives, but your last statement saying that it was a wonderful working relationship and you you'd like to see everyone have that kind of close, creative relationship, is admirable. So, thank you for that insight. Robin.
I'm also wondering who were some of the mentors that you and Sandy drew upon?
Robin: When Sandy went on sabbatical, she visited national and international aphasia centers, and she brought back the inspiration and the sense of community that she experienced there. I was reading the World Health Organization ICF with its impairment, activity, and participation parameters, and I could envision how we could use this concept to create goals for clients, and to create participation groups where clients could work on their impairment-based goals in the context of an activity of choice. Sandy and I studied relationship centered care, which came out of the Fetzer Institute here in Kalamazoo, and we envisioned a program where family members or care partners were part of the mission of a program. Finally, in our collaboration, we created a sequential way to educate the students through the semester to be able to provide this type of SLP treatment. On the first page of the article we published in 2007, you'll see a long list of people who inspired us. Those were ACE program mentors and as ACE continued, Elizabeth Nadler, Marie Koss-Ryan and Suma Devanga added their creativity supervisors. And I would add that once Aphasia Access was formed, there were many people in Aphasia Access, who became our collaborative mentors. So, thank you to everyone.
Janet: Robin, you said something about interprofessional education and interprofessional practice, and it kind of got lost in a sentence, and I'd like to circle back to that and acknowledge that you and Sandy were visionaries in this area. Nobody else was talking about interprofessional practice, or publishing about it, or making it happen. You and Sandy were at the forefront of that. I remember those papers that you wrote, talking about the value that each one of the rehab professionals could bring to the treatment of the patient and how they we can all reinforce the goals for the patient, the various goals. So, we all owe you a debt of thanks for that, as well.
Robin: I didn't realize that was that different. I just realized that we had the opportunity since we were at Western and there were the other professionals there, that each semester, we ended up creatively finding ways to coordinate with OT, or bring in a social worker or whatever it was. I have enjoyed watching the growth of this area of interprofessional over the last years and seeing how it's appreciated.
Janet: I think it's very important. A previous Aphasia Access Podcast, #84, was with Mary Purdy, who talked about interprofessional collaboration and related a specific story where she and a physical therapist work together to achieve the particular goal of one of their clients. Another podcast, #78, with Michelle Gravier, Albert Mendoza, and Jennifer Sherwood described an interprofessional exercise program. I'm so glad that there is a greater appreciation for interprofessional education and interprofessional practice these days.
So, Robin, as we bring this conversation to a close with thoughts, or as I like to call them Monday Morning Practices, do you have ideas that you could share with our listeners, things that they might either think about in the long term, or that they might do on Monday morning when they see their clients?
Robin: Well, I almost feel teary as I'm answering this, but I'm going to work through this teariness. I'm thinking about beginnings. And I'm thinking about endings. And so, I'm thinking about making sure that in the beginning, if someone's in the hospital and has new stroke or new aphasia, whatever it is, that you are giving them hope, as described as important in the article way back by Avent, Glista and others, and I can't talk without giving a story, Janet.
I’m remembering in homecare, seeing a new patient with severe aphasia, not much talking. The wife left the room while I was in the session, and I noticed a deer’s head on the wall. So, I took out a piece of paper and I wrote down some written word choices, you know, baking, gardening, hunting, whatever. I said, “Tell me, I want to learn about you.” And he pointed to hunting, so we ended up having the whole conversation using supportive communication strategies and written words. At the end of the almost hour, his wife came in the room, and I said to her, “Oh, I just was hearing about the time that he and his brothers went up hunting up by Lake Michigan, and they had that rainstorm, and then the roof was leaking.” She looked at me and said, “How did he tell you that?” So, I took out the piece of paper, and I showed her our conversation, basically, with words and drawings. He had already gone through acute care, and inpatient rehab so I said to her, “Didn't anybody show you this along the way?” And she said, “No.” So that's one of the messages that I often like to express - the importance in the beginning of giving the family a method to be able to communicate because that's a way of giving hope. I can also quote another colleague of mine, Marie Koss-Ryan, who did some acute care pretty recently: same thing - she went in the room, new stroke, new severe aphasia. He was trying to read his menu to order breakfast and couldn't do it. So, she took out her iPad, pulled up a page of juices, and said,” What kind of juice do you like?” and he pointed to tomato juice. A little while later the tray came and then his wife came for the day visit and she saw the tomato juice, and she burst into tears? Marie asked what was wrong, and she said, “How did somebody know he drinks tomato juice every morning for breakfast.” She took out her iPad and showed her how you can pull up pictures. To me that's giving hope through a way to communicate. So that's the piece from the beginning. And I can't help but mention just briefly, to also remember if you are working in palliative care and end of life care, to also show up as a speech-language pathologist that can help people to be able to communicate as best as they can, even if it is at the end of their life.
Janet: Those are, are very important points, I think, to start us off to remember the power of communication. And then also to know that there are lots of messages people wish to convey towards the end of their lives. How can we help them convey those messages?
Robin, this has been an amazing conversation. And I know that you and I will have many more opportunities to talk to each other. I just wish we had many more days right now to listen to the stories and share the thinking and the insights and the bits of mentorship we have received from each other and from people in our clinical worlds. So, thank you so much for speaking with me today. I am proud to call you my friend and my colleague, and again, congratulations on receiving the Sandra O. Glista Excellence in Mentoring award. I know Robin, that when I asked you to be interviewed for this podcast, you were initially reluctant, as is your style. I'm so glad that you finally agreed because the messages that I'm hearing in our chat today, they're far beyond you and me. They're about the power, the transformative power, of mentoring, no matter who you are, or who you mentor. So, I thank you, and on behalf of Aphasia Access, I want you to know how humbled I am by your long-standing commitment to mentoring. I believe that even though you are retired from Western Michigan University, you have many future mentees that will also be humbled by your long-standing commitment to aphasia, to people with aphasia, to their care partners, and to mentoring.
Robin: Thank you, Janet. Thank you very much. And I guess I will say this ended up being a gift that you gave me to be able to do this. I mean, we should all do it for each other to give them a chance to reminisce and tell their story and get perspective and life. So, thank you.
Janet: You are more than welcome, Robin. I would also like to thank our listeners for supporting Aphasia Access Conversations by listening to our podcasts. For references and resources mentioned in today's show please see our Show Notes. They are available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, please email us at [email protected]. For Aphasia Access Conversations, and again thanking you Robin Pollens, I am Janet Patterson and I thank you all for your ongoing support of Aphasia Access.
To engage in further conversation about mentoring, Robin can be reached at [email protected]
Reference List
APPENDIX B: Rancho Los Amigos Scale-Revised. (2011). Continuum (Minneapolis, Minn.), 17(3 Neurorehabilitation), 646–648. https://doi.org/10.1212/01.CON.0000399079.30556.03
Avent, J., Glista, S., Wallace, S., Jackson, J., Nishioka, J., & Yip, W. (2005). Family information needs about aphasia. Aphasiology, 19(3–5), 365–375. https://doi.org/10.1080/02687030444000813
Glista, S.O. & Pollens, R.D. (2007). Educating clinicians for meaningful, relevant, and purposeful aphasia group therapy. Topics in Language Disorders 27(4), 351-371. https://doi.org/10.1097/01.TLD.0000299889.62358.6f
Pollens R. (2003). Home care. Hom Healthcare Nurse, 21(5), 348. https://doi.org/10.1097/00004045-200305000-00015
Pollens, R.D. (2020). Facilitating client ability to communicate in palliative end-of-life care: Impact of speech–language pathologists. Topics in Language Disorders 40(3), 264-277. https://doi.org/10.1097/TLD.0000000000000220
URL
The Art of Mentoring
https://artofmentoring.net/what-is-mentoring/
Aphasia Communication Enhancement Program, Western Michigan University https://wmich.edu/unifiedclinics/vanriper/aphasia
Fetzer Institute
https://fetzer.org/
Aphasia Access Podcast Conversation #84 Interprofessional Practice and Interprofessional Education: In Conversation with Mary Purdy
https://aphasiaaccess.libsyn.com/interprofessional-practice-and-interprofessional-education-in-conversation-with-mary-purdy
Aphasia Access Podcast Conversation #78 A Llama, a Resistance Band, and Neil Diamond Walk Into a Bar - An Interprofessional Exercise Program for Individuals with Aphasia: A Conversation with Michelle Gravier, Albert Mendoza, and Jennifer Sherwood
https://aphasiaaccess.libsyn.com/a-llama-a-resistance-band-and-neil-diamond-walk-into-a-bar-an-interprofessional-exercise-program-for-individuals-with-aphasia-a-conversation-with-michelle-gravier-albert-mendoza-and-jennifer-sherwood
Interviewer info
Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia and other neurogenic communication impairments. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer.
In this episode, Lyssa Rome interviews Dr. Janet Patterson about evaluating and treating auditory comprehension deficits for people with aphasia.
Guest info
Janet Patterson, Ph.D., CCC-SLP, is a Research Speech-Language Pathologist at the VA Northern California Health Care System in Martinez California, where she was formerly the Chief of the Audiology and Speech-Language Pathology Service. Janet has also held leadership positions in the Academy of Neurologic Communication Disorders and Sciences, and ASHA Special Interest Group 2, Neurogenic Communication Disorders. She is an ASHA Fellow.
Show Notes - Episode
Next STEPS: In conversation with Professor Ian Kneebone
Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, and Thursday Night Poets.
I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.
I'm today's host for an episode that will feature Professor Ian Kneebone from the University of Sydney Technology.
Biosketch:
Ian Kneebone Professor and Head of Discipline (Clinical Psychology) at the Graduate School of Health at the University of Technology Sydney. He is a chief investigator at the Aphasia CRE and has led and co-facilitated much of the work on optimizing mental health and wellbeing for individuals with aphasia. His work on illuminating the stepped care model as a guide for clinicians working with individuals with stroke has helped speech-language therapists and other rehabilitation disciplines to better understand their roles in psychological care after stroke and specifically aphasia. He previously joined the Aphasia Access Conversations Podcast with me for Episode #34. We’re excited to have Ian joining us again, as so much work has taken place in the area of psychological and psychosocial interventions for individuals with aphasia in the past five years since that previous podcast conversation. Professor Kneebone and his colleagues have been at the center of that work, including developing and evaluating the ASK trial, the Kalmer relaxation program, collaborative goal setting, Reducing Emotional Distress in Stroke (REDS)and low intensity psychotherapeutic interventions, among others. In addition to Professor Kneebone’s large-scale investigations about psychological interventions, Ian is a clinician at heart, also very engaged in hands-on clinical work, where he directly collaborates with speech-language pathologists and other disciplines. I’m privileged to discuss these topics with Ian today.
Take aways:
Interview Transcript:
Jerry Hoepner:
Today, it's my pleasure to introduce Professor Ian Kneebone. In Kneebone, is professor and head of discipline in clinical psychology at the Graduate School of Health at the University of Technology Sydney. He is a chief investigator at the Aphasia care and has led and co-facilitated much of the work on optimizing mental health and wellbeing for individuals with aphasia. His work on eliminating the step care model as a guide for clinicians working with individuals with stroke has helped speech language pathologist and speech language therapist and other rehabilitation disciplines to better understand their roles in psychological care after stroke, and specifically aphasia. He previously joined the Aphasia access conversations podcast with me for episode 34. We're excited to have Ian joining us again. As so much work has been done and taken place in the area of psychological and psychosocial interventions for individuals with aphasia. In the past five years since that previous podcast conversation, Professor Kneebone and his colleagues have been at the center of that work, including developing and evaluating the Ask trial, the calmer relaxation program, the collaborative goal setting, project and low intensity psychotherapeutic interventions among others. In addition to Professor knee bones, large scale in investigations about psychological interventions, Ian is a clinician at heart, also very engaged in hands on clinical work, where he directly collaborates with speech language pathologist and other disciplines.
I'm privileged to discuss these topics with Ian today. I'm excited to dig into this conversation. And I'm really interested in talking a little bit about your perspectives about kind of the intersection of speech language pathology, and psycho psychotherapeutic interventions, psychological care, those big topics in general. And I know that in our past conversations, we've discussed a little bit about just the profound need for psychosocial psychological interventions for individuals with aphasia and the kind of the lack of access to care for mental health providers, to individuals with aphasia. So maybe we can start out a little bit by just sharing your thoughts on the role of speech language pathologists in addressing communication-based psychological supports for individuals with aphasia and their families.
Ian Kneebone:
Well I think the first thing is to say that the whole stroke team should take responsibility for psychosocial issues and challenges, both from a prevention point of view, but also an intervention point of view. Where there's the potential to do so. Particularly with people with aphasia, the speech pathologist, or speech language therapist’s role is a real standout one. And we know frequently that this work, because of the communication problems, often falls to Speech, Language Therapists to, you know, by their own admission, feeling unprepared to do it. So, I think there's certainly the will there from speech language therapists to be involved in this work, we just need to provide the right training the right scope of practice, and to get things going. So, this this gap in services is filled. You know, you were talking about the rates of psychosocial issues, but we do know that if you've got a stroke, and you've got a phase, you're afterwards, you're twice as likely as someone with without aphasia after a stroke to be anxious or depressed and have very, very high rates. Even clinical levels of depression are common. I guess it's not surprising anyone who works in the area will know that, but it's still very sobering to restate that statistic.
Jerry Hoepner:
Yeah, it sure is. Just speaks to the tremendous amount of need and, and obviously, we know the tremendous amount of unmet needs for people with aphasia and their family members as well. Just because of how we're barely scraping the surface of this issue, I think, but making some good progress in those directions, you've done some really foundational work on the Stepped Care Model for stroke and even other populations as well. How can SLPs draw upon that model as a way to help them to understand scope of practice issues, to understand where they fit and kind of guide their interventions?
Ian Kneebone:
Well, I think Stepped Care has been really useful. And I've gotten great feedback on this not that I invented step care by any means. But certainly, the improving access to psychological therapies model from the UK started this off in mental health. But the opportunity is to convey and allow people to know where they can work and what's appropriate, and when they might need to refer on or co-work with, with another profession. And the Stepped Care Model really does that. So, people are able to say, Well, I'm involved in this group, it's designed to prevent things like depression and anxiety, which are very common, as we just said, and I'm able to learn these skills or apply these practices to improve outcomes and prevent this. But you know, at some point, when these levels of symptoms of such and particularly questions of risk, risk of self-harm, risk of suicide, those sorts of things, when commonly people would refer on to mental health professionals. And I think the unique ability of speech language therapists to provide supportive communication training for mental health practitioners and so on, means that the role goes beyond just prevention, and to actually intervention. But also, to say that the model where people stepped and matched to the level of care they need, means that, you know, there is a scope of practice beyond prevention for speech language therapists, and that's those therapists who choose to train in psychological practices and psychotherapies. So, we do know, for instance, there's some strong work going on at the City University in London, where they're looking at training Speech, Language Therapists in a particular sort of Solution Focused therapy, which is very well regarded as an evidence base. And that's provided by speech language therapists, with the right training and the right background, to develop the competencies and know how to manage risks, and so on. So, the Step Care Model allows people to see where they're at in terms of their scope of practice, when they're on or when, if they want to, what skills they might need to practice at a at a high level.
Jerry Hoepner:
Yeah, that's really well, well explained. And that's actually a really nice segue into my next question, because I know, the Step Care Model that you presented back in 2016 identifies some specific psychological interventions. So, you talk about motivational interviewing, cognitive behavioral therapy and a number of other approaches. I'm just interested is their kind of a plan in mind or a process in mind that will help to identify other interventions and kind of where they fall to give mental health professionals, speech language pathologists, and other disciplines, kind of a sense of where those other interventions fall. So, things like dialectical therapy and so forth?
Ian Kneebone:
Well, there's a range of therapies that we've found useful for people with, with mental health problems, and obviously, it's the application of those to people with aphasia that's the point of interest. And we do now have very promising work going on cognitive behavior therapy for people with aphasia, we've just completed a case series, which is just been accepted by Neuropsychological Rehabilitation, looking at modified CBT for people with aphasia, which is really exciting. We're doing stuff on behavioral activation, which is very promising for people with aphasia and relaxation therapy, we've just completed some case series work, looking at that. And that's really exciting because that was co-designed by people with aphasia, and then then then launched based on that very solid foundation. The more interesting or the very interesting work is being done on some of these, what we call third wave Cognitive Behavior therapies, which are things like Dialectical Behavior Therapy and Acceptance and Commitment Therapy, for instance. And a lot of that's been leveraged off the brain, the general brain injury literature now where people like Dana Wong, who's from LaTrobe University here has done some seminal work looking at modifying for people with cognitive and communication problems, Acceptance and Commitment Therapy. Reg Morris from Plymouth University in the UK has done some great founding to work with some of his PhD students and looking at Acceptance and Commitment Therapy for both carers and people with aphasia after stroke, you did mention before, it's easy to focus on, of course, the client or the patient with aphasia, but you know, the need goes beyond that, because the ripple effect of the, of the impact of the communication and, you know, the disabilities that commonly come with stroke as well goes to a person's social circle and familial circle, and including those people in therapy is, is an important part of the investigation as well. Absolutely.
Jerry Hoepner:
It's so common, we have partners who are socially isolated as well, just because they're the primary communication partner for that individual with aphasia, and whatever restrictions to participation, they feel, right, it's just all connected.
Ian Kneebone:
When I teach my clinical students, I often say like, you no, you've got an identified person who's been referred to you, but you've got to realize that nearby, there's going to be someone who's just as anxious and depressed, if not more so. But at that point, and that we do know, there's a reciprocity between anxiety and depression, that person with aphasia, and, and a significant care person. So, it's really important to include those people in therapy if you can, but being mindful of not including it in a way that adds to the significant burden and challenges. So it's got to be done in a really appropriate way without asking people for things that they're not able to provide, because they're just coping with things like role changes, financial issues, and you know, the loss of the person as the relationship they had with them on account of communication.
Jerry Hoepner:
Absolutely. And, as you were talking about that, it makes me think about how that changes over time as well. So those initial kind of burdens, that might be a tough time for them to engage in those kinds of conversations, because like you said, they're just trying to keep their head above water and trying to make it through everything else, all those other role changes and additional roles they've taken on. But I wonder about your thoughts in the chronic phase as, as both the individual with aphasia and their partners start to make those adjustments, if maybe that's an opportunity for some of those interventions.
Ian Kneebone:
Those often talk about that that phase is life after stroke. And that's usually about 12 months later, when we know pretty much how people's rehabilitation has proceeded. And people are pretty much aware of how they will be functioning on into the future. And as you say, I think there's a there's a sort of a crisis point when someone's having their stroke. And there's that kind of acute phase where people are adjusting, but the important thing at that time, people think well, my personal, my personal looking after, or I'm going to get better and so on. But it's when that realization happens. So, we find these sorts of emotional difficulties can occur early or later after, after a stroke, with or without aphasia, of course, and that, you know, it's important that people's needs be met, on into the future, the recovery phase in life after stroke. Because many people when we've done this in our qualitative interviewing and surveys by places like the Stroke Association, UK, that people often the 12 months, a lot of the care, a lot of the treatment or drops away. And then as we were talking about the feeling isolated, and well, this is all I'm going to get, and so on, people are really challenged at that time, and we need to be able to provide, you know, supports and therapies on into the future for those individuals. You know, depression, anxiety content, you know, is pretty consistent at any time after a stroke. And when we're really bad at predicting, I think, you know, who's going to be affected at what state so we're going to be going to be vigilant, and we have to be, you know, particularly vigilant, I guess, I'm probably preaching to the converted with your audience here, but that we know that people are anxious and depressed out of stroke effects, their functional outcomes, and including the communication outcomes and so on, you know, if somewhere, you know, I remember seeing someone with a with a swallowing problem and the Speech Language Service was very concerned about this. And they had a day of good mood, and they came to a day hospital party, and now reading these party pies like there was no tomorrow's person's actual ability to swallow. Now I'm not saying it wasn't about risk was altered by their mood state and that that goes across the continuum of the areas which speech language therapists are involved with. So really important for outcomes and not just mood outcomes. You know, being depressed or anxious is distressing in itself. But you know, the ability to make a difference to people's physical and communicaiton outcomes of addressing psychological issues is considerable.
Jerry Hoepner:
Yeah, I like the way that you describe that as being so intertwined and interconnected. So, you can't just separate those pieces out and say, I'm dealing with the physiological issues right now. Now I'm dealing with the psychological or the psychosocial and emotional issues, because there's so interconnected and, and I want to go back to a point you made earlier, which is, so often people early on have that sense of I'm going to be this, it's, I'm not going down the road a year, I'm not going to be one of those people who needs this. So, I'm just going to, you know, nose to the grindstone kind of work through this right now. But it can pop its head up anywhere in that recovery. And, and I think there's some reality that sets in once some of those initial supports are taken away.
Ian Kneebone:
I mean, one of the biggest challenges I've faced when I've been in in stroke rehabilitation, and working with Speech, Language Therapists is around when people are using compensation, being asked to use compensation, as a strategy for communication and kind of dealing with all that mean, I'm not going to get any better with my speech. And, and, and, you know, people get really angry, and it's their frustration, and so on, and there's, you know, therapists going to be blamed for it. So, there's a real, real strategy there for dealing with that, and, you know, working with people to retain, retain hope. But you know, being pragmatic with well, you're leaving the hospital, now, you're going to have to communicate there in the community, you want to get out and do some of the things or at least some of the things you used to then how are we going to do this? And how are we going to approach it? But yeah, it can be quite a crisis point.
Jerry Hoepner:
And I Yeah, and I think part of our role as a speech language therapist in that context, is to communicate that really well in a way that doesn't set them up for oh, you're switching over to compensatory approaches that you that means you think that I can no longer improve, in terms of my abilities, but rather to convey this is one of several things that we want you to do to be more successful, and to continue to engage. That's, I mean, that's kind of for speech language pathologists who are supposed to be good at communicating those things. We don't always do a very good job of communicating those things. I was thinking a little bit about Deborah Hersch's work on transitions and discharges and how poorly we do and saying, This is what's going to happen. We've got these limitations of the system. But this is the plan, this is not something that you did wrong, this is something that we just need to work through. And when we, I think when we feel discomfort about conveying things like it's time to transition home, or it's time to transition out of therapy, that we don't do a very good job of explaining those things.
Ian Kneebone:
Well, I've certainly worked with a lot of members of stroke teams, allied health and speech pathologists, but one of the one of the difficulties, of course, is when we feel uncomfortable about doing it, and it's not the news, people want to hear we kind of beat around the bush. And then when people aren't clear, and you've got people with cognitive and communication problems, it's kind of a perfect storm for it to go amiss. Yeah. So, I think one of the messages I give out is people think if they just communicate it really well, it'll all be fine, and it'll go work fantastically, and people will transition really smoothly. But it's a bit of a wakeup call to realize, however well you put it, this is sometimes news people don't want to hear, and that there's going to be a reaction to that. And just to appreciate that it's not necessarily your fault. But there's the reaction that is it is people becoming aware of limitations going into the future, not the not the recovery they wanted, but the recovery they've got and supporting someone through that is a challenge when sometimes, you know, you're the target of dissatisfaction.
Jerry Hoepner:
Right? No, that's such an important point. Just being cautious of that as well. Because certainly, certainly that's an important thing to consider. I'm interested in the process of interprofessional collaboration with mental health professionals with psychotherapists. What are your thoughts on the best way to approach a collaboration or setting up a collaboration with a mental health provider rather than an “oh, this person's got needs beyond what I can provide? Take them off my hands.”
Ian Kneebone:
It’s just so essential. One of the struggles we've had is that you know many people in my own profession, which is clinical psychology will say, well that this person can't communicate, I can't provide them with therapy. And that's so disappointing because we know if we modify them, we can do that. But certainly, my clinical experience in collaboration is that, you know, working closely with a speech language therapist about the best ways to communicate with someone they've, you know, very thoroughly assessed, is really useful in allowing me to learn and, you know, I work in session with, with therapists, as well as you know, gaining assessments and information and talking to them about that before it. And really importantly, there's a lot of in the research we're doing about collaborating, particularly with collaborating, particularly with speech language therapists, to be able to do those sorts of prevention work and, and therapies we've, we've discussed. And that's been such a joy working with Amanda Lakute, and some other people on that work, and Miranda Rose's team in looking at optimizing mental health and wellbeing in designing, for instance, Jas Sekhon’s work, we know, on teaching Speech, Language Therapists, you know, counseling skills, so that they feel competent to support people that first step on the ladder, but also dealing with how speech language therapists can obtain the skills. And also really importantly, this is bringing onboard people with aphasia, to the co-design work, to design things that we know will be effective with them rather. So, we're not doing things to people, we're doing things with people and looking at the best way of designing our interventions. And not just our research, but our clinical interventions, so that they translate well into the different environments, healthcare environments that we work in.
Jerry Hoepner:
Absolutely, and kind of three really important points for a speech language pathologist, one, having that training to feel more confident and comfortable with actually carrying out those level one, psychological interventions, but also having training on how to teach mental health professionals how to interact. So, training those communication support strategies is a big part of our role. And if there should be something that we're comfortable with, we should be comfortable as speech language pathologist with training others on how to use those communication supports and
Ian Kneebone:
Jas of course is a speech language therapist, Jas and she has got such a great course and such a nice way of delivering that in the speech, language therapy world that it's, it's so nice, and then people say, well, Ian, can't you go and teach us in counseling and like, you know, I'm happy to provide counseling training and different psychotherapies. But, you know, the role model that people like Jas provides in saying, well, this leads, not only can Speech Language Therapists use these therapies I can try and others in them because, but you also know, it's a competency within, within the scope of, of every practitioner really. Yeah,
Jerry Hoepner:
absolutely. And, and I think sometimes we forget about that piece, kind of think it's a given that we're going to be able to train other professionals, but I think, also, there's a little bit of that uncertainty, when you're working with someone else about expertise and roles and territory and all of those things you might kind of back off in terms of providing the thing that you are the very, you know, what is your kind of bread and butter, your biggest strength in terms of teaching those things. So, I agree, Jas is fantastic, and the work that she's done in that area has been just so helpful and moving us forward from an educational standpoint.
Ian Kneebone:
I guess as a psychologist, I kind of assumed a lot of that work would be the net training was available in courses but as we know, from the surveys and so on, but it has been a bit hit and miss despite the demands and like guidelines, like the Royal College in, in the UK, for people to have those roles, and then it's kind of I know, it's hard to fit everything into the into courses, because there's so much new material on different ways of intervening and assessing, but it's such a core skill that it's good to see that those who may have missed it on the way through that they're released post, you know, these master courses that provide people with to fill in that gap.
Jerry Hoepner:
Agreed. And again, there's a lot of a lot of training that still needs to happen yet and a lot more changes to happen in the graduate student training programs for speech language pathologists as well.
Ian Kneebone:
When I'm talking to you from Australia, of course, and we're no exception here despite you know the leading lights that we have in this country for speech pathology and trading and communication and counseling skills for people with aphasia we’re still working on it here and I know from your surveys, that's still a challenge in the US as well. So, it's a piece of work in progress.
Jerry Hoepner:
Yeah, it definitely is. At least there's some awareness of it. And we're starting to make a little bit of ground, I think in terms of awareness. And definitely when we have international programs for training, speech language pathologists and speech language therapists from a counseling standpoint, but also for working together collaborating on research internationally, I think that bodes well, for our future, I think we're moving in the right direction. I want to return.. Oh, go ahead.
Ian Kneebone:
No, no, I'm just agreeing with you. So Oh,
Jerry Hoepner:
Oh gotcha. I want to return to the other point that you made about codesign, with individuals with aphasia, involved in that process. And I might have you talk a little bit about the relaxation program that you co designed the calmer program and kind of how that was set up. And what you've learned from that?
Ian Kneebone:
Well, we pretty much it's run by Rebecca El-Helou, who's a PhD about the completed a PhD with me, and she's done a range of work, including the Kalmer project, which is part of what we call REDS, which was Reducing Emotional Distress in Stroke program. And we just thought, like, you know, relaxation, it's, it's one of these things that we know works with the general population really well. And, but it's not offered to people after stroke generally, or wouldn't necessarily people with aphasia after stroke. And so one of the things we wanted to do by that is, you know, start developing the evidence base, and we thought, you know, really, there are all these great relaxation programs out there, but will they work with people with aphasia, I mean, the advantages, of course, they can be very communication life, because of the nature of the interventions, you know, which is about, you know, focusing attention, reducing autonomic arousal, using breathing and so forth. So, they can be very nonverbal. So, with you, this is eminently suited, and it's also something that could be online, it can be on your phone, right. And it's such a great thing in terms of accessibility. So we work with people with aphasia, because we thought like a lot of, despite the low level of communication required, that it may not suit everybody, we weren't going to assume that people with aphasia would, would take to it necessarily, and we're so pleased that we got a group I think about 10 or 11, people who were involved with us in looking and going through the, the sort of standardized programs, and then looking at how we could reduce down the communication, and how we could also, you know, just make it user friendly, and whether people needed to care or not to support them in, in getting them online to do it. And just really tightening up something and tailoring it to people with aphasia. So, we've got about two levels of communication, for instance, which people can dial up depending on their needs. And, you know, and while I say we will talk with people with aphasia, we also of course, include speech language therapists and uh Brooke Ryan, you may have heard her doing her work, she's out in western Australia at Curtin University now doing a great job in, in looking at psychosocial work with people with Aphasia out there. And, you know, certainly it was gone, guided by all the current guidelines on supporting people with aphasia, not only to do the relaxation training, but to communicate their views on the relaxation training and how we might modify it to be more appropriate. So that was great. And we also have recently done behavioral activation study, there’s just been a publication in Aphasiology about behavioral activation, which is an intervention, which, at its simplest, is a getting people re engaged with their environment, doing things that they enjoy that they've got mastery over, and they value. And also looking at how it can produce an online program that would support people once again, with or without a carer, to undertake that in a really accessible way assessing accessible communicatively but also because it's online, it's available at the time of your own choosing. And we're really lucky we may not be known as well internationally is in Australia, but we had a lot of work from the Black Dog Institute here, which is developed a lot of online programs. So, we also benefited from their huge expertise in this area, in, in developing something that we hope is going to be really great for people with aphasia and, you know, just get the resource out there. I mean, some of the work we've done is trying to get, you know, health services to be out able to offer treatments but you know, getting clinicians with the time. And you know, getting resources to do that is a real challenge. So, you know, we've got to go with where people may be able to access things themselves through Stroke Association, stroke, foundations, those sorts of things, where possible, so that we can get things out there and kind of like, circumvent all the problems of resourcing in the health community, which, you know, we've got a very different approaches to healthcare in the US and Australia, but the same, the same struggle in trying to get resources to people. And so, we're just looking across the board and how we can do that in this online stuff, particularly with the assistance of real experts, like Black Dog has been a great opportunity here. And we're just like, inevitably looking for funding for the next stage where we can roll it out and provide an evidence base to how useful this might be to people with aphasia after stroke.
Jerry Hoepner:
I think that's so useful. And I want to kind of make the connection between behavioral activation and the Life Participation Approach to Aphasia interventions that Aphasia Access stands for. And that's just such an important part of everything that we do from a life participation approach is increasing that participation, finding ways to get people reengaged in authentic, meaningful things that they care about. So, I want to make that connection. And the way that that might look for individuals could be part of a community group, it could be an aphasia camp like we offer, and I know that Linda Worrall’s group started at a camp in Australia a couple of years ago as well. So they've got a couple under their belt, or, and I think I like this extension into the accessible online format that can reach as many people as possible, even if that's like the way that gets them into the loop, because I think it's hard initially to, to invest in going someplace or becoming a part of a group, things like that. But certainly, there's something to be said about once you're in and once you have that success that comes with having the right supports and having peers who understand you, then it's a little bit easier to take that next step, I think,
Ian Kneebone:
Oh, absolutely. And like the across this kind of leisure rehabilitation is something our occupational therapies, therapists colleagues talk about, and the behaviors talk about environment enrichment and so on. And, you know, battle activations, all in that ballpark, and really important for people, as you say, it's certainly part of, you know, Miranda Rose and her team are doing work on community aphasia groups, which are kind of exciting, because they're led by people with aphasia, once again, because of the resources, issues that happens with, you know, trying to fund these sorts of activities. And, you know, there's, that's certainly an important part, and also meeting in the group, as you know, is a valuable, enjoyable experience, both in terms of the support from right from people, you know, looking at what other people are doing, and getting engaged with that, but also, you know, being on a similar journey, and the support that that can give to other people's is, is really valuable, I think, is as part of the process that leads to the positive experiences from those groups.
Jerry Hoepner:
Absolutely. And I, and I hope our listeners I got pretty savvy listeners, I hope they pick up on that connection as an important way to return to those meaningful activities and to have a positive effect on mood and other psychological domains.
Ian Knebone:
Well, watch this space because the works, you know, the initial works being done, but they're rolling it out in Australia, where they've just got some, some country-type areas involved in offering this training to people. So they've developed some really comprehensive training things for the materials for the people, the professionals that support this program, but also for the people with aphasia who lead the groups. There's a PhD should Kathryn Pettigrove, who, who you should get a podcast on, she's just amazing and excited about this work, and you may have seen her in the US recently, but such talks with such enthusiasm about it. So, I would recommend that to you and your listeners. And as the evidence comes out, and it's going to be a great model, I think for helping people to help themselves. Really.
Jerry Hoepner:
Absolutely. And you're right, we definitely need to get her on this podcast. I’ll write that down as soon as we're done, make sure that we follow up with that terrific point. (See episode 86)
Episode #86: Making Aphasia Groups Work
Ian Kneebone:
And she's just so enthusiastic, new energy coming into the, into this area, not that there's a lack of energy, but it's just nice to see that, you know, a few people hanging on the baton.
Jerry Hoepner:
Absolutely. Yeah. It's great to great to spread that out. Because there's so much to do. There's no no lack of things to do in this area, for sure. I'm interested in your thoughts. You talked a little bit about Jas Sekhon, but your perspectives on training, both future speech language pathologists who are in their training programs and existing speech language therapists pathologist who are already working clinically in seeking continuing education. Can you talk about some of the keys from your perspective to making that education successful?
Ian Kneebone:
The first step is, you know, there's still a little bit of work in saying this, you know, convincing people this is part of their role, because some people will, will think, Well, no, I just hand this over to the psychologists that I you know, I don't think we can, we can accept that but, but moving forward. With that, it's really integrating, you know, the right, you know, say step one type interventions like problem solving, behavioral activation, relaxation therapies, and so on, right in into training courses, because these, these are things that, you know, people say, what's a psychological therapy? How am I going to do that? Well, it because it's psychological therapy, it doesn't have to be done by a psychologist is the first point. And a lot of it's kind of manualized and fairly intuitive to professionals. And many people come and say, you know, problem solving, and I've been dealing with all these challenges in my life already. And this just makes such sense. I wish I'd kind of it just, I should have known this already. Because, you know, I'm a slight person, I've got a master's degree in speech, and language therapy. But you know, it's so useful to me as well, and handing over to my clients is just really great. I mean, we do know, there's some work that's been done in the UK looking about Peter Knapp and his colleagues at looking at problem solving as a prevention and, you know, really good RCT results on how that prevents, you know, psychiatric psychological symptoms after stroke.
Jerry Hoepner:
Absolutely.
Ian Kneebone:
So, I think it's just rolling out and getting people to be to get over their concerns about and Jazz Jazz program. If you would, then that's, you know, specific counseling skills, but also then add some of these other strategies in. And we've got some experience in doing that recently. It's with step care, Carolyn Baker, who's at Monash University here in Melbourne, has been doing some work with with both online and offline online because of COVID in rolling out these therapies with allied health practitioners, including psychologists, but also Speech, Language Therapists, and being able to do that, and the main thing is just the kind of the structural issues in, you know, adding to people's workload, and allowing the system to support the investment that will, you know, lead, as we say, not just to people coping better with things but also improve, you know, the functional outcomes after stroke. So, while that's been a bit of a mixed feast, in terms of, you know, outcomes, because it's just been so hard to get these systems to take on board the training and get, get the people through these very straightforward psychological interventions that we know will almost certainly benefit people. But we're doing that, as I say, a two-pronged approach, we're looking at the self-help co-design work that can go online and so on and be accessible that way. And also trying to, you know, train every day, healthcare workers in being able to provide these to people with aphasia.
Jerry Hoepner:
Absolutely, and when you say, fitting in to people's schedule, or their workload, I mean, I just think that goes both ways, because not addressing these things really limit your outcomes in terms of, kind of, like you said, the communication outcomes are going to improve as those psychosocial outcomes begin to improve.
Ian Kneebone:
You know, it's short sighted not to make this investment. But you know, doesn't mean it'll net. And so, you know, the logic doesn't necessarily follow, right. In terms of what happens with healthcare resources. And the other thing is, I guess, we're talking about all what suspects with therapists, fleet Language Therapists role is really important that not to throw the baby out with the bathwater is that, you know, like, if someone's communication can improve their depression and anxiety will improve as well. So, you know, as I often say, when I'm talking to training other allied health people, you know, we've all you know, you've all abandoned the session because someone said or stressed or upset and so on. But if you keep on doing that, something's got to change. You can either refer them on or do some collaborative work with somebody, but not, you know, not stopped doing the OT or the physio or speech language therapy, because you know, those things have to come along with as you were saying earlier, they're all joined up.
Jerry Hoepner:
Absolutely, no, that's a, that's a really great point. And they all have to happen simultaneously to be effective, for sure. Ian earlier, you were talking about Carolyn Baker's work, her recent work, and I'm really interested in the low intensity psychotherapeutic interventions from the eDelphi study. Just wondering about kind of your thoughts on what the place is for those you mentioned occupational therapist, physiotherapist, speech language therapist.
Ian Kneebone:
This is Carolyn's most recent work, which is the last data we kept it in the middle of this year has been rolling out training to people, you know medical nursing, speech language therapists and also psychologists in kind of first level step care for people with stroke. So, people were enrolled in the program, and some was telehealth some was not. And they would then choose one of three therapies that they thought might suit them best. And that would be problem solving behavioral activation or relaxation therapy, and then they'd have seven sessions of therapy with that. So these were people who weren't necessarily psychological therapists, although some were providing, providing these sessions within a current health system that's operating day to day with the practitioners from the current health system, rather than you know, someone coming in and doing a great RCT. But then the resources disappear, and you go away, no matter what you prove, one way or the other. And that's been a real eye opener, I mean, that there were major challenges when we started that because of COVID, because so many healthcare workers, as I'm sure there were in the, in the US were, were redirected to other tasks to do with the epidemic. But we've soldiered on, and got that it's a really great learning experience to see. See how that went, how it was rolled out. And we've got one at a time and qualitative evidence that we're going through, it's starting to sift through at the moment to look at what we can really learn from that project about how we do this going forward. I mean, I do not at the moment, it's just that that redirection of resources, particularly under COVID, was so difficult. And that was perhaps a unique time. But the resources, as I was saying earlier, are always under scrutiny and precious. So, right. It's about I think, partly getting the evidence base and so on. So we were talking about relaxation therapy recently. And I've got the irony of people saying, well, you know, you put it in a grant application to do to demonstrate the treatment efficacy, and people said, well, it's relaxation therapy, why wouldn't work? Of course it will work. And then, and then the people say, well, we can't put it in policy, because there's no evidence base. So you kind of you know, it even the same, the in the same grant round. Yeah. And so we're just doing it anyway, we're doing it with PhD students, we're doing it with, you know, startup resources that Miranda Rose in the Center of Research Excellence in Aphasia Rehabilitation in Melbourne have got hold of for us. And we're going to demonstrate the usefulness. So, people will put it in their guidelines and so on. And then the UK National Stroke guidelines, say all this great stuff about some relaxation training, we do the same, but there isn't sufficient, not sufficient numbers, significantly power to demonstrate efficacy and so on. I'm just really grateful they mentioned some of Vaour work. But then I kind of have well, yes, but and, you know, that means it's not rolled out. I used to work in a stroke rehabilitation word in Vatum, in the UK, and we had a number of Allied Health assistants, you know, physiotherapy assistants who've gone off and done all this training in how to do relaxation with people that didn't get any time to provide. So it's kind of like, oh, gosh, you know, it is hard to, sometimes to, to get this happening. But you know, I think there is saying that, but there is kind of a, it's a right time. And you were talking to me before about, you know, five, you know, psychosocial guidelines for people with aphasia, and so on that were being developed. And I think the more that we do that, the more the ability will be there to leverage those resources to people who need them.
Jerry Hoepner:
Agreed. I think that is a really good place to start to wind down our conversation because I think we're moving in the right direction. Still, still plenty of work to do, but I'm wondering, kind of as a as a summary are there are two or three things that you think speech language therapist, working with people with aphasia should keep in mind from a psychological intervention standpoint, and what's a good starting point?
Ian Kneebone:
Well, I think it's probably the three things I do is like, you know, take it on as part of your work to be aware of these, these these issues and try not to shy away from As tempting as that may be. So, the first thing is, you know, there are good instruments for now that we have screening for anxiety and depression so you can pick those up and they're well within your skill base to use. And then getting the skills and training and things like counseling if you don't have them already, or you don't feel confident in using them, and then getting access to some of these other things. So like Caroline's work, you know, we're hopefully the publish the manual shortly that can guide people, speech language therapists in using those treatments. So that will be something that's out there and a resource that people can use. And once again with it well within the competence of, you know, speech language therapists. And I think finally, you know, just using the great communication skills you've got, even when you're sort of giving people difficult news to receive that. And just being as clear as you can be, you know, how to do the communication. And, you know, kind of accepting people are going to be frustrated. But, but giving it the clarity and the justification in a way that retains people's hope for further recovery but it's pragmatic, to get them functioning as well as they can in the community, because that's so much of the key to people going forward.
Jerry Hoepner:
Absolutely. And that's, that's our whole goal to get them reintegrated as much as possible.
Ian Kneebone:
So, awareness, skills, communicating effectively regarding the difficulties and the challenges.
Jerry Hoepner:
Excellent summary. Well, Ian, it's been fantastic having this conversation. Great to have it again, I don't remember exactly how many years ago we talked. But it's great to have that follow up conversation. And I know our listeners will really enjoy this conversation. So, thank you for being here today.
Ian Kneebone:
I’m more than happy to help out and thanks for all the speech language therapists who have contributed to my work. I wouldn't be here without them. And it's great to see this interprofessional learning moving forward. If I hadn't missed out any of the great people I've worked with, I do apologize. But there's just too many of you now, which is part of the success story.
Jerry Hoepner:
Yeah, that's a good problem to have. Well, thank you again. Goodbye.
Ian Kneebone:
Thanks, Jerry.
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.
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Interviewer info
Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic conditions. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer.
In this episode, Lyssa Rome interviews Teresa Gray about creating equitable services for people with aphasia who are bilingual, non-English speaking, and historically marginalized groups.
Guest info
Dr. Teresa Gray is an Associate Professor in the Department of Speech, Language, and Hearing Sciences at San Francisco State University, where she directors the Gray Matter Lab. Teresa’s research aims to improve aphasia health care outcomes for historically marginalized populations. Her research interests include bilingual aphasia, the mechanisms of language control in aphasia, and the role of language rehabilitation and its short-term and long-term effects on functional communication. Her team is working to develop evidence-based treatment methods for non-English speaking persons with aphasia, as well as bilingual persons with aphasia. In addition, the Gray Matter Lab hosts identity-based conversation clubs. The goal of these groups is to increase quality of life for the participants, and the lab is starting to examine why these groups are so meaningful to the participants.
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Edited transcript
Lyssa Rome
Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California, and I see clients with aphasia and other neurogenic communication conditions in my LPAA-focused private practice. I'm also a member of the Aphasia Access Podcast Working Group.
Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Dr. Teresa Gray, who was selected as a 2023 Tavistock trust for aphasia Distinguished Scholar, USA and Canada. In this episode, we'll be discussing Dr. Gray's research on aphasia treatment for bilingual and non-English speakers with aphasia, as well as identity-based aphasia conversation groups.
Dr. Teresa Gray is an associate professor in the Department of Speech, Language, and Hearing Sciences at San Francisco State University, where she directs the Gray Matter Lab. Teresa's research aims to improve aphasia health care outcomes for historically marginalized populations. Her research interests include bilingual aphasia, the mechanisms of language control and aphasia, and the role of language rehabilitation and its short-term and long-term effects on functional communication. Her team is working to develop evidence-based treatment methods for non-English-speaking persons with aphasia, as well as bilingual persons with aphasia. In addition, the Gray Matter lab hosts identity-based conversation clubs. The goal of these groups is to increase quality of life for the participants. The lab is starting to examine why these groups are so meaningful to the participants. Theresa Gray, welcome to the Aphasia Access Conversations Podcast. I'm really glad to be talking with you.
Teresa Gray
Thanks so much, Lyssa. It's great to be here today.
Lyssa Rome
So I wanted to start by asking you what led you to study bilingualism and aphasia?
Teresa Gray
Sure, that's a great question. So, you know, really it was about curiosity. And so when, when I finished my master's in speech language pathology, I was working in Los Angeles at Rancho Los Amigos National Rehabilitation Center. And I was working alongside a phenomenal group of speech language pathologists and a rehabilitation team, and it was just a wonderful experience. And a lot of our patients were bilingual. Some people were monolingual, non-English speakers. And it was just a situation where I was learning more and more about how to treat this population that may not speak English, even though a lot of our aphasia materials are based on English speakers. And in addition to that, I was curious to know more how does language present after stroke? If someone is a simultaneous bilingual versus a sequential bilingual, does that affect life after stroke? What about proficiency? What about language dominance? What about age of acquisition, all of these issues that go into language presentation—I was very curious about, and there wasn't a lot of research out there. And so, of course, as SLPs, we read the literature, and we really want to know, what is best practice.
So when I decided to go back for my PhD, I decided I wanted to go study with Swathi Kiran, who is a leader in the field working with bilingual adults with aphasia. And so I had that opportunity. And I moved from Los Angeles to Boston to go study with Swathi. That's when I really dove into learning more about cognitive control and what that looks like as far as like language control, and how that interacts with cognitive control and how that's represented in the brain, and what that means for our patients.
Lyssa Rome
And since then, I know you've moved into treatment. Can you say a little bit more about that?
Teresa Gray
Yeah, absolutely. So after it, yeah. So after Boston, I accepted a faculty position at San Francisco State University. And I continued with the cognitive control work. But that's when I realized, yeah, that's fascinating work. Because it's really better. It's getting to know it's learning more about the brain. And I think that's so important. It's so fascinating.
But I think what's also important with our patients is how does the rubber hit the road? How are these people, our patients and their families and caregivers, and the stakeholders, how are they affected by the aphasia? And what does that look like? And so that's when I started, I expanded my research agenda and the program, and I teamed up with Chaleece Sandberg. She was already working on ABSANT, which is abstract semantic associative network training. And that's a treatment that if you train concrete words, they get better. But if you train abstract words, they get better, they improve, but we also see generalization to the untrained concrete words.
So when she and I started talking about it, and you know, I bring the bilingual piece. And so we really wanted to develop a bilingual version of ABSANT. And the idea here is that when you treat the dominant language, it improves. But if you treat the non-dominant language, it improves, but you also see cross-language generalization to the untrained dominant language. And as we progressed through these this work, we really we started to realize that it's not just spreading activation that supports the cross-language generalization. There's this level of cognitive control.
So to achieve the cross language generalization, we're seeing that not only do you treat the non-dominant language, but patients also need to have intact cognitive control mechanisms at play. So the direction we're moving in is that if we have patients that come to the lab for bilingual ABSANT, we also make sure that we administer some of the nonverbal cognitive control tasks to get a sense of how they're processing that information, because that informs how we interpret the ABSANT performance.
Lyssa Rome
It sounds like really interesting and important work. And we we've interviewed Chaleece Sandberg on this podcast. I'll put that link in the show notes. Can you can you say more about bilingual ABSANT and what you've learned?
Teresa Gray
Yeah, sure. So what we've learned, like one aspect that we've come across is that just like, one size doesn't fit all is the same with therapy. And it wasn't before too long that we realized that this bilingual therapy isn't a great fit for all patients. And I'll tell you what I mean, like most bilingual therapies, we're treating patients within monolingual contexts. So you'll treat English and then you treat Spanish.
In my lab, one of our goals is we're really trying to be as inclusive as we can. And if a patient comes to us and speaks a language combination, let's say Russian and English, we think about do we have resources? I mean, do I have students available to administer the intervention? Can we norm the stimuli and I've been fortunate enough to have many bilingual students who speak a variety of language combinations. And being in California, most of my students speak English and Spanish, but I've also had Polish-English combinations Chinese-English, Russian-English and a few others.
What I'm getting to is that a few years back we had a Tagalog-English English speaking patient, and a very motivated student who wanted to administer bilingual ABSANT. And what we found was that during the English phase, it went as usual but during the Tagalog phase, both patient and clinician reported that it was just, you know, quite frankly, it was weird not to code switch, and it felt constrained and unnatural. And so really the logical next step was to think about, well, really to question, why are we delivering a bilingual therapy in a monolingual context, we shouldn't be doing something where it's more of a code switching based therapy that really fosters the communication that the patient needs.
So this was a few years ago, and at the time, we didn't have the bandwidth or resources to address this. And unfortunately, that's how research functions—it’s really about capacity and resources. But now here we are, and last summer in 2023, we did start norming our Tagalog data set, and to really move forward with this, a truly code switching, or as some folks are calling it translanguaging, like this new, another phase. So we can actually look at what is most beneficial for these patients who are code switching in their natural environments. And so thus far, we have run one patient who has who has gone through this translanguaging experience. And we're quite fortunate to have two more patients on deck. And so we're pretty excited about this.
Lyssa Rome
Yeah, that's really exciting. And I think on this podcast, we talk a lot about life participation, the life participation approach is about making therapy as real to life as possible, and I think what you're describing is targeting therapy to the way that people actually use language. Whether you call it code switching, or translanguaging, the way we deliver therapy to people who are bilingual or multilingual should mirror in some way, their experience of speaking more than one language. Am I getting that right?
Teresa Gray
Yeah, absolutely. And I think it also touches on you know, I think it's important that we listen to our patients, other clinicians, family members, and if you're working with students, listen to your students. For quite some time, my students have been asking about non-English interventions for aphasia. And we all know that the majority of aphasia interventions are based on English speakers. But the thing is, if we're simply adapting English aphasia interventions for non-English languages, does that create treatment resources that are culturally and linguistically appropriate?
Now, regarding the cultural piece, oftentimes you can choose stimuli to be culturally appropriate. But what about the linguistic aspects when you take a treatment and simply adapt it to another language? And I think it's important that we stop and think about this issue. And I'm in a situation where my students are thinking about social justice issues within the field of speech pathology, and we're thinking about patient access to services, and what those services are, and are they equitable across diverse linguistic populations?
Lyssa Rome
It seems like you're talking about really listening to and understanding and asking the right questions of all of the stakeholders—the students, the clinicians, and, of course, the people with aphasia. And, as we were preparing for this podcast, you talked with me a little bit, and I was really interested in what you had to say about, the importance of understanding client's language history and how they use language. And you had some ideas for how to elicit more information about that. Would you mind sharing that for a moment?
Teresa Gray
Well, one thing I've learned to ask, and I learned this from Maria Muñoz, who's down in Los Angeles. One thing I think it's really important is how we ask questions to our patients and their families. And so rather than asking someone if they're bilingual, which can be a loaded question, and people interpret it in different ways, because some folks think, well, to be bilingual, you need to be highly proficient in both languages. But really, that's not the case, right? Like, we want to know if people have exposure or if they use a language other than English. And so rather than asking you, if someone's bilingual, you can say, “Do you speak another language other than English?” Or “Do you understand another language?” And then people really start to open up.
Another important way to ask questions is, you know, who are you directing your question to? Are you asking the person with aphasia about their needs and what they want to do, versus the families? Sometimes families will say, “Our 24/7, caregiver is speaking Tagalog.” Let's say you're Spanish, so they really need to speak Spanish, but maybe the patient wants to get back to their, you know, a club or something, you know, some social group that they're a part of, and they want to practice a different language.
So again, you know, the language history, the way we ask questions, I think it's quite important when we're gathering information so that we can develop, you know, these rehabilitation programs for patients.
One way that we're addressing equitable services in my lab is that we've thought with my students and I we've thought about going back to the original ABSANT. So original ABSANT was developed for English monolinguals. And we decided to push ahead with a Spanish monolingual version. And this is quite important in the United States. This population, Spanish speakers, are growing, especially in certain areas, of course, in California. We really wanted to see we're assuming that ABSANT can be adapted to various languages. And theoretically, it should make sense. But I think it's important that we have the data that shows it. And so we've in this past year, we've started collecting data to actually show that yes, it is effective, because I think as conscientious clinicians, and in our profession, we talk about best practice. It's important that we show it. And so, moving forward, this is what we're doing and we're quite thrilled that we have the resources and the opportunity to move forward with this type of a project.
Lyssa Rome
It sounds like you're describing how equitable services starts with research that's more inclusive and is itself more equitable.
Teresa Gray
Absolutely. And I think it also it reminds me of how do we capture improvement? How do you measure success? Because right now, when we're doing research, or right now, when we're doing research, and also clinicians out there in the field, we talk about data collection, right? How are you measuring improvement? And for us in the lab, we're looking at effect sizes, but sometimes these effects sizes aren't significant. However, the patient reports that they feel more comfortable, and they're more confident at family gatherings, or out in the community, and that maybe they won't ask for help at the grocery store, but if they need to, they're not scared. And I think that is so I mean, that's invaluable. But how do you measure that? And how do we incorporate that into our data collection? And how we report improvement to the funding sources? Right? Because all of us I, you know, you can't get very far when without talking about insurance dollars and how we measure improvement to get more services for our patients.
Lyssa Rome
I think that that's, that's absolutely true. And I think we have to measure what's important to the person that we're that we're working with. I, I also wanted to talk with you about the identity-based conversation clubs that you have been working on at San Francisco State. Can you say a little bit more about those?
Dr. Teresa Gray
Yeah, sure. So we do have a few different groups, conversation groups, through my lab. And one group, it started out as just a service to the community. And so we started an English-speaking group. And at first a few years back, we were in person, but we transitioned to Zoom once COVID hit, I was very impressed with my team, because here in California, when things shut down in mid-March, within three weeks, the group was online.
Around that time, maybe a few years ago, we started talking about a Spanish-speaking group, we do have many bilingual patients who are Spanish-English bilinguals, a few of these folks are more comfortable speaking in English. That's their emotional language, and it's their human right to use that language to communicate. So my lab put together a team to start hosting a Spanish-speaking group. And what we've seen is that there's just a different dynamic, when you're speaking in the language that you're most comfortable using. Jokes are different. Chit-chat is different. And we found that patients report a great appreciation for the Spanish-speaking group. In addition to the Spanish conversation group, we also have a Black conversation group that's facilitated by Black student clinicians. This group was started back in January of 2022.
Lyssa Rome
And we spoke with some of the members of that group on this podcast and I'll again, I'll put the link to that in our show notes. And they were the people who participate in that group. Some of the members of that group had a lot of really positive things to say about how meaningful is had been to them to be amongst other Black people who share their experience. So maybe you can say a little bit more about that group?
Teresa Gray
Yes. So this group, it was started based on public interest. So one day in 2021, I received a phone call from a woman whose father had suffered a stroke. And she said to me, my dad is Black. He frequently attends aphasia groups. But the majority of people are white, where's the diversity? She was essentially asking, Where's the diversity? We know Black people are having strokes. But where are they? And what resources are there for people of color who have strokes? And of course these are important points that she's raising. And, in fact, leading up to this woman's call, my students and I were, we had been talking about starting this type of a group, but I wasn't sure if there was interest.
But that being said, we know when we look at health disparities, and we look at the data, we know that Black people have as much as a fourfold higher incidence of stroke than their white counterparts. But Black people are less likely to receive rehabilitation services. And that's just not right.
I have, you know, in this group, like you were saying, lists of people are so appreciative, and they're so interested, and they just really value this group. And I've had some of these patients who have said to me, Look, it was the summer of Black Lives Matter, people were getting murdered in the streets, people were rioting, and there was this national discourse going on about it. And they wanted to talk about it. But their aphasia conversation groups, were talking about the weather, or sports or the things that just seemed inconsequential at that time in their lives.
And I think this just gets back to the importance when we think about identity groups—what they are for these people with aphasia, and how do we facilitate and coordinate them? And especially, you know, when the majority of SLPs are white and monolingual? How do we step into this arena? And how do we support and how do we, how do we move forward with these, you know, with these groups that are so valuable and meaningful for people with aphasia? Yeah.
Lyssa Rome
I mean, I think it's incredibly important work. What have you learned about some of the best practices?
Teresa Gray
Sure, yeah. So I think it's all about, you know, being open and listening, but also learning how are you an ally? How do you ask questions? How do you make yourself vulnerable? Because if you're not sure about something, you want to ask. And, you know, sometimes with these groups, we've all left groups or situations where we reflect upon like, “Oh, I said, I said something—was that appropriate? I don't know.” But again, it's making ourselves vulnerable, and asking you to going back to the group next week and say, “Hey, I heard this, or I said, this, was that appropriate?” I think it's just being comfortable with this kind of discourse. To get there, it just takes practice, which just is, you know, going through the motions and doing the work and going through it and experiencing it.
Lyssa Rome
It seems like that's something that you've really prioritized within your lab and with your students and in your work.
Teresa Gray
Yeah, and you know, and we make a point to talk about it, we talk about what it looks like, how it feels, and sometimes those are hard conversations to have. There's literature out there. There's different resources to lean on. But it's definitely I mean, we're all learning as we going as well as we're going and I think it's about having just being reflective, which which can be challenging. But I think that I think as we come through to the other side, we're growing and it's this bi-directional growth, whether it's me and my students, us and the patients, the caregivers, just having these honest conversations because I think our goals are the same, right? Our priorities are to improve quality of life. And and that's essentially what we're doing.
Lyssa Rome
Coming back to bilingualism, I'm wondering if you have any additional thoughts or advice about use of interpreters, or thoughts for bilingual clinicians? How can they best work with and support people with aphasia? Who are also bilingual? Or who are non-English speaking?
Teresa Gray
That's a great question Lyssa, because many of us, many of SLPs are not bilingual. And quite frankly, even if you are bilingual, you may not speak the language of that population where you are working.
So it's so important that we partner with our interpreters. And know knowing who they are at your site. And this is tricky, because when we talk about this, one recipe isn't for everyone, because all sites are different. The way interpreters are set up in one hospital differs from the next hospital. So you need to know your system and then figure it out. Because if you want to start a conversation group, and you don't speak that language, you're gonna have to team up with the interpreter. And, and I think my advice now is, you know, it's not just about asking the interpreter about that culture or language, it's about doing your homework.
So for instance, if you have Spanish-speaking groups, it's important to know what countries your patients come from. And this is valuable because holidays vary across countries, and even within countries holidays and traditions will vary. So you know, when these and these variations can feed into your group discussions. So for instance, around the holidays, people can share what they do with their families, what foods do they eat, how do they celebrate? Last year, we had a Spanish-speaking group, and it was around the Fourth of July. And so rather than talking about the US Independence Day, each participant shared what their country's independence day looked like, and growing up what their traditions were. And people really enjoyed that type of activities.
As clinicians, learning about cultures, is so important. I know SLPs, you know, your time is so valuable, right? Like, our caseloads are high, but we can learn bits of information, talk to interpreters, explore topics, and then have activities. And if we go into it with open, you know, just creating a safe space where we're all learning, I think it creates this environment where people feel welcome, and they're comfortable. It's a positive environment when you have an SLP, who may not speak the language, but you have an interpreter who does. And then the participants, of course, they speak that language as well.
Lyssa Rome
It reminds me of what you were saying earlier about the importance of careful listening to the people that we're working with, including interpreters, right, but also particularly the people with aphasia, who we’re serving. Are there any other best practices that you want to share for SLPs who are working with historically marginalized populations of people with aphasia?
Teresa Gray
Well, I think at the end of the day, it's important that when we go into these environments, thinking about what materials are we using? How are people responding? And creating a space that if we have open eyes, we're open to suggestions. It creates an environment where people are comfortable to share, and, and then even when people give feedback, we can also improve our practice.
Lyssa Rome
I think that that's at the heart of what we aim to do as, as people who believe in the life participation approach. So thank you for that. I'm wondering as you look ahead, what's on the horizon for you in terms of your research in terms of your work in your lab? Can you tell us a little bit about, about what you're working on now, or what you're looking forward to working on?
Teresa Gray
Well, one thing on the horizon that we're quite excited about is with our Black conversation club, it has had such a great reception, and the participants are so thrilled to be there, that we really want to dive deeper, and take a look at what makes this group so special. And so we're ramping up now, hopefully we'll be starting soon. I'm partnering with Jamie Azios, who's in Louisiana, and her expertise is in conversation analysis. And so we're teaming up to start looking at the Black conversation club, to look at the discourse and try to figure out well, what are the themes? What is the secret sauce? What is the special sauce that makes this group so powerful?
Because I think, you know, when when we have the when you know, when you have data that shows that, and we can write about it and share it with our colleagues, I'm hoping this will inspire and give more of a foundation platform for our colleagues to start groups like this. Because if you have a research paper out there, it's something to hold on to. And it's something to really say like, look, this is effective. And it's worth it's, you know, it's so meaningful and valuable that we should be starting groups like this and other places as well.
Lyssa Rome
Absolutely. I agree. And I really look forward to that research. I think it's so important. So thank you for doing that work. Dr. Teresa Gray Thank you so much for your work, and for coming on the podcast to talk to us about it. I really appreciate it. It's been great talking with you.
Teresa Gray
Great, thanks so much.
Lyssa Rome
And thanks also to our listeners. For the references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at [email protected] Thanks again for your ongoing support of Aphasia Access. For Aphasia Access Conversations, I’m Lyssa Rome.
Links
Gray Matter Lab at San Francisco State University
Jamie Azios — Aphasia Access Conversations Podcast episode (Second episode)
NAA Black Americans with Aphasia Conversation Group — Aphasia Access Conversations Podcast episode
Chaleece Sandberg — Aphasia Access Conversations Podcast episode
Article: Beveridge, M. E., & Bak, T. H. (2011). The languages of aphasia research: Bias and diversity. Aphasiology, 25(12), 1451-1468.
Article: Gray, T., Palevich, J., & Sandberg, C. (2023). Bilingual Abstract Semantic Associative Network Training (BAbSANT): A Russian–English case study. Bilingualism: Language and Cognition, 1-17.
Open access: https://www.cambridge.org/core/journals/bilingualism-language-and-cognition/article/bilingual-abstract-semantic-associative-network-training-babsant-a-russianenglish-case-study/9B7FD1EDBDAB6FD042CD4714E1548005
Article: Sandberg, C. W., Zacharewicz, M., & Gray, T. (2021). Bilingual Abstract Semantic Associative Network Training (BAbSANT): A Polish-English case study. Journal of Communication Disorders, 93, 106143.
Article: Gray, T., Doyle, K., & Rowell, A. (2022). Creating a Safe Space for Black Adults With Aphasia. Leader Live.
Open Access: https://leader.pubs.asha.org/do/10.1044/2022-0614-black-aphasia-group/full/
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