During this episode, Janet Patterson, Research Speech-Language Pathologist at the VA Northern California Healthcare System, speaks with Dr. Linda Worrall. Linda is Emeritus Professor at the University of Queensland, a fellow of Speech Pathology Australia, and founder of the Australian Aphasia Association. They will be discussing IARC; a bit of history, the influence it has had on aphasia research and practice, and what to look forward to in 2022.

In today’s episode you will:

Learn some history and exciting information about the 2022 International Aphasia Rehabilitation Conference
Find out the value of international collaboration to people with aphasia and to the aphasia research and clinical community
Hear about tiny habits, change, and a challenge to ask ourselves, “If I had aphasia, I would want…”.

Janet Patterson: Welcome to this edition of Aphasia Access podcast, a series of conversations about community aphasia programs that follow the LPAA model. My name is Janet Patterson, and I am a Research Speech-Language Pathologist at the VA Northern California Healthcare System in Martinez, California. Today I am delighted to be speaking with my esteemed colleague and friend, Dr. Linda Worrall. Dr. Worrall is an individual who, to most of us associated with Aphasia Access, needs little introduction. She is Emeritus Professor in the School of Health and Rehabilitation Sciences at the University of Queensland in Australia. She is a fellow of Speech Pathology Australia, and founder of the Australian Aphasia Association. This is only a small part of the tireless work she does to serve people with aphasia, their family members and care partners, and the clinicians who interact with them on their aphasia journey.

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

Today's episode with Dr. Worrall crosses all the gap areas as we talk about the upcoming International Aphasia Rehabilitation Conference. Aphasia Access is honored to host the 2022 International Aphasia Rehabilitation Conference, which will be held in June in Philadelphia, Pennsylvania. This event is based on a tradition of excellence and brings together 200 to 300 delegates, researchers and clinical specialists in speech- language pathology, linguistics, neuropsychology and rehabilitation medicine, all of whom are dedicated to aphasia rehabilitation.

Before moving on to our interview today, I want to take a moment to acknowledge our colleagues Tammy Howe, Eavan Sinden and Brent Paige, who chaired IARC 2020 in Vancouver. They collaborated to create a wonderful conference that unfortunately had to be cancelled in the middle of the pandemic. We appreciate their efforts and are glad we have been able to return to an in-person conference in 2022. I'm excited for the conference this year and in this discussion with Dr. Worrall, hope to spread that excitement to those of you who are listening.

I am honored to have Dr. Worrall as my guest today. We will be talking about IARC, a bit of history, the influence it has had on aphasia research and practice, and what to look forward to in 2022. Welcome, Linda. And thank you for joining me today.

Lina Worrall: Ah, thank you, Janet. I'm absolutely delighted to be talking about IARC.

Janet: Let's start our conversation today, Linda, with a bit of history about IARC. I know it's been around for quite a while, but I'm not sure exactly how long. How did the idea for IARC come into being, and when or where was the first meeting? Tell us about the sense of spirit and collegiality at those early meetings?

Linda: Sure. I joined the IARC conference in its second year, but I'm led to believe by Ilias Papathanasiou, who has recorded the history of this conference, that there were three people who said that we needed an international conference that focused on aphasia rehabilitation. And those three people were Maria Pachalska from Poland, Renata Whurr from London, and your very own Nancy Helm-Estabrooks. And so the first of these conferences happened in 1984, in Krakow, in Poland. I joined the next conference in Gothenburg in 1986, as a PhD student, and since then it's sort of gone mostly through Europe, but also to other parts of the world. So, Florence, Edinburgh, Zurich, Aalborg. And then I missed a few of those because I was in my childbearing years. But then I rejoined it in 1996, when it came to the US in Boston, and Carl Coelho and Robert Wertz convened the conference. Then it went to the very exciting one of Johannesburg in South Africa, Claire Penn organized that one; then Rotterdam, and then I hosted one in Brisbane in 2002. Then we went to a Greek island of Milos. We've also been then back to Sheffield, Slovenia, Montreal, came back to Australia and Melbourne, The Hague, London, Portugal and then the cancelled Vancouver one. But now it's back to the US and to Philly in June 2022. So that's very exciting.

So, these conferences, because they originated in Europe, the first few conferences, the sort of the spirit of the conferences was very much cross cultural, cross linguistic, because Europe has so many languages and so many cultures there. In the early meetings, there was a lot of that sort of sharing of information and how things were done in the different countries. But it's always been a very friendly and supportive conference. And you know, I just love the IARC.

Janet: From your perspective, Linda, what has been the guiding philosophy for IARC over the years of its existence?

Linda: Well, it's a very interesting conference, in that there is no organization that auspices the conference. It's an organic one. It is driven by the community, the aphasia community. So, I think the theme of the upcoming conference in June in Philadelphia is “the engaged community”. And that's what we've become. The conference, I think, has been pushed around the world, if you like, by this engaged community of aphasia researchers and clinicians. I think that's one of the key features of this particular conference, is that it has a very strong focus on clinical practice. It's research, but it's often research by clinicians, for clinicians. So, the guiding philosophy has been that each place that takes on the conference, molds it according to their context, so there's no financial sort of carryover, from one conference to the other. It's an entirely independent sort of conference, but it continues to grow. So, it's very interesting from that perspective.

Janet: That's really exciting to hear, because engagement is so very important. No matter what you're doing, whether you're working with a patient, whether you're engaging in research, and to see this community of researchers and clinicians engaging together to think about aphasia, I think is terrific.

Linda, IARC, as its name implies, is an international gathering with previous meetings in Portugal, Greece, although I wish I would have been at that Greek island, that must have been a fun conference, Australia, Britain and the United States. So, will you reminisce about the past meetings you attended? I'm thinking in particular about the synergy and the collaboration that evolved during the meetings, and after the meetings

Linda: Sure. The sort of collaboration that has occurred has become a very international, interwoven network. And so, what we seem to be doing is progressing the field as a whole, because we're collaborating together, we're always sharing sort of projects, we’re hopefully not reinventing the wheel. So, the conference is also a sort of a place where there's a lot of meetups. For example, the Collaboration of Aphasia Trialists will often have a meeting at the IARC. Aphasia United often has a summit, what we call a summit. For example, the last one we had was in Portugal. We discussed the issue of aphasia, which is one of the major recommendations of the White Paper. That led to a paper by researchers and clinicians at that summit, that set up a bit of a research agenda and brought the attention of, hopefully, the research community, to the fact that we're not making progress on aphasia awareness; that the numbers have stayed the same pretty much for a long time. So, then that attracted the interest of a Ph.D. student, Claire Bennington, and she is an experienced clinician, and also Deputy Chairperson of the Australian Aphasia Association. Her whole Ph.D. is all about aphasia awareness. So that I think is a good illustration of how the sort of collaborations across the world then can progress some work forward.

I like the single-track format of this conference in that everyone is in the same room together. So that means that everyone gets a greater understanding of other's work. The posters, there's a lot of time and attention given to posters as well. You get an opportunity to talk directly to the people at length; it's always the place where there's the new ideas are coming through. And so that's always exciting to see what new ideas, what new therapy ideas, are being brought through into developing some evidence, maybe, for those ideas. In Australia, we often have to travel long distances to the conference, we've been scheduling afterwards a writing retreat of international researchers. And so, for a week, we just talk aphasia, and that has also been very productive because it brings the researchers closer together as well. That's something that, I think, has emerged from this particular conference.

Janet: You've said some really exciting things and ideas, simple things from the notion of progressing the field together as a whole, and working together and collaborating, sharing, because don't we all get better when we share and work with each other rather than trying to be in our little silos. You also talked about the single-track format, allowing everybody to hear the same thing, the same message, the same paper, but yet they have individual perspectives. So afterwards, we can all talk about that paper and there can be different perspectives on it, that will lead to collaboration and synergy.

Linda: Yes, yes.

Janet: That's an exciting thing that's happening.

Linda: Yeah.

Janet: Well, as interest is mounting for IARC 2022 in Philadelphia, and as we emerge from the pandemic, I believe it will be heartening to us to see each other in person again. The program is stellar. It's well rounded, and it offers content for everyone. Linda, you are one of the keynote speakers for IARC 2022, and I wonder if you might give us a little bit of a teaser or trailer about your talk and any other interesting presentations on the program. Just enough to further pique our interest in attending IARC in June.

Linda: Yes, of course. I'm very honored to be asked to be a keynote. My topic this time is about mental health and integrating mental health into aphasia rehabilitation. And so, I framed it within something I talked previously about, the seven habits of highly effective aphasia therapists. This presentation will delve much deeper into one of those habits, which is about mental health. I do try to put a lot of thought and reading and preparation into my keynotes so that clinicians can go away with some things that they can implement on Monday morning when they return to work. So that's sort of my aim. My rationale is, I think, is that every therapist will encounter someone with low mood, depression, or anxiety, if they are in the field of aphasia rehabilitation. I'm hoping to present some compelling evidence about why therapists need to integrate psychological care into their aphasia rehabilitation. I want therapists to walk away knowing how to do it. And I'm going to continue the habits theme, by using the concept of tiny habits. So that's the teaser, I'm going to try to distill all of this evidence and complexity into three tiny habits that integrate psychological care into a failure rehabilitation. So that's my challenge.

Janet: Ooh, and a big challenge it is.

Linda: Yes. Maybe some people have already sort of listened to or heard the tiny habits book, but it just resonates with me when therapists are so time poor, that integrating a tiny habit that is prompted by some other sort of therapy, or behavior in the clinic room seems to make a lot of sense to me. I know that as a clinician, that you are going from one patient to the next, and you just need some little trigger, or a prompt sometimes, and a set of words, maybe, to remember to do something, to do a good behavior. So that's the tiny habits framework.

I'm also very keen to hear some of the other presenters. Marian Brady is going to be talking about the RELEASE study. If you haven't come across the RELEASE set of papers yet, it's a step up from Cochrane in terms of the trustworthiness of this evidence. They have used a secondary analysis on over 1,000 individual participant data points, so over 1000 people with aphasia. They're asking some of the really important questions in our field, like the effectiveness, not only on language outcomes, but functional outcomes; they're asking questions about prediction; and they're asking questions and providing answers to things like timing, intensity, frequency and dose of therapy as well. That is going to be a great presentation.

And Miranda, one of the great thinkers, I think in aphasiology, Miranda Rose is continuing the theme of dose intensity in the chronic phase. She is heading up the Aphasia CRE [Centre for Research Excellence in Aphasia Rehabilitation and Recovery] in Melbourne, Australia. There are some fantastic Ph.D. students in that center, I think there's something like 37 or something Ph.D. students. So, there's a lot of work going on. Jytte Isaksen is talking about training medical staff, and honestly, I have no idea how she's done that. I find medical staff one of the biggest challenges, trying to teach them about conversation partners and how they need to modify their language. Suzanne Beeke is also talking. She's talking about her amazing website, Better Conversations, and she's from London. It's all about the dyad, you know, treatment that addresses, both people in the interaction. From that perspective, it's a really great sort of site for therapists, and there's an online learning program. I know that they have recently trialed that with primary progressive aphasia, too. Yes. So, they're some of the sort of the invited presentations that I'm particularly looking forward to. There's a lot of papers that I'm also just looking forward to in terms of presentations, things like Madeline Cruice’s and Lucy Dipper’s, LUNA program. It's about sort of discourse intervention, which is just going to be great. And then Aura Kagan is going to be talking about conversation partner training in the acute setting. I mean, I have always found that a really challenging sort of setting. And then of course, there's Nina’s updated White Paper, Nina and Jamie Azios, and I'm really keen to hear the updated version of that White Paper as well. That's not even going along the posters, because the posters haven't been released yet. So there's, you know, lots of presentations, I think that people will just find really interesting.

Janet: It sounds like, and I tell you, you have piqued my interest far beyond what it was five minutes ago. So, I'm very excited to hear these papers. I read the RELEASE papers and I agree with your assessment, that they really are taking a look at important questions, clinical questions, that we need to be asking ourselves, how we can be more effective and more efficient in the work that we do. But I'm especially interested in hearing your talk, Linda, because I think the psychological aspect of what we do is very important. We talk to clinicians, saying, well, we should be counseling, or we should be talking to patients, and clinicians will say, “Well, no, wait a minute, I'm not a mental health professional, I can't do that.” And I would say, well, that's right, you cannot do the things that mental health professionals can do or should do. But you can have a listening ear, you can counsel people on better communication strategies. So, it's very definitely a part of our work, just having a conversation with the person with aphasia and their family member, having that conversation and being a person who shows care and concern for the person and the family, as well as for the aphasia and the change in the behavior.

We've done some work on motivation lately and depression with some research partners. One of the things that we did was review a lot of papers that reported on aphasia treatment. Many, many of them talked about motivation, but what they said is something like, well, the patient did not do well because they were not motivated, or the patient was discharged because they were not motivated. Fine. But there was no explanation of what made them not be motivated, or how did they figure out the patient was not motivated. And quite frankly, I think that motivating is part of what we need to be thinking about as clinicians because if a patient is not motivated, we need to figure it out - if it is just not the time for therapy yet? It might not be. Or is there something that we can do differently or better to engage the patient and the family member in this enterprise of aphasia therapy? I think the whole issue of mental health and emotional health, is just a critical part. It will help us be better, more efficient, more effective clinicians, I think.

Linda: Yes, I agree. I'll be talking about the stepped psychological care model. I think that provides some clarity around our role in mental health. It talks about preventing psychological health problems, and then it talks about interventions that we can do that are not, you know, like behavioral activation, doing things that are enjoyable, etc. We are part of the team for that. When people need, you know, psychological intervention, we still have a role in that psychologists need to be able to communicate with the person with aphasia. So, you know, that stepped psychological care model is, I think, very useful for understanding what our role is as the mood problems get more severe. But we've got a lot of roles even in the prevention stage, too.

Janet: Yes, we do.

Linda: My keynote will then sort of be preface to Brooke Ryan's reporting on the results of our large, cluster randomized controlled trial of an intervention aimed at preventing depression. She will be reporting on the results of that, too. That's the ASK trial.

Janet: Well, that will be exciting. I keep thinking back to this issue of the engagement that you talked about earlier, not only the community of aphasia clinical researchers, but also the engagement of the patient, the family and people in treatment. That is what makes aphasia therapy successful. We can have the best impairment-based or activity-based treatment, but if we're not engaged as a group, whatever the group means, then that reduces the likelihood for the optimal outcome, I think.

Linda: Yes, I agree totally.

Janet: So, I'm so excited about IARC. I want to tell our listeners that registration for IARC is easy. Just go to www.aphasiaaccess.org/IARC2022/. You can register there; you can also see the list of speakers and events. You can also just search on IARC aphasia and get the link as well.

Linda, you have talked about so many terrific aspects of IARC and now I would like to ask you for your personal opinion on a question, why attend IARC? By that what I mean is, what makes IARC different from other aphasia conferences? There are many aphasia-related conferences each year, we've been to many of them over the years, when our paths have crossed, and each of those has great programming. We also know though, that people have limitations, such as financial limitations, job related requirements, family responsibilities, or travel concerns. And we all have to carefully select what meetings we attend, because we can't attend all of them. So, what makes IARC stand out in your mind as a premier conference on aphasia?

Linda: I think it's in the name. International, it is truly international, and it has rehabilitation in the name. The focus is very much on rehabilitation, not so much about the nature of aphasia, it's about rehabilitation. The focus has been on translating the research to clinical practice and involving clinicians in that decision-making about what research needs to be done is very much part of that. Also, it's becoming more and more apparent that we need to involve our clients in deciding what research needs to be done too.

The Philadelphia conference is a hybrid conference, so you can attend in person or online. I think that overcomes some of the travel barriers. I think it will be a very well-presented conference from an online perspective, because I know that they're investing a lot of money into the platforms. It won't be just a Zoom-type thing; it is a bespoke platform that they're using.

I've been to most of the other aphasia conferences around the world and what I like about, and why I go to, this particular conference, is I think it's the diversity of the cultures. For example, we've got one of the presentations from Ghana this year. There's a developing speech-pathology field in Ghana, and that's just wonderful that's going to happen. From a research perspective I think all of the papers really have had a focus on optimizing outcomes for the person with aphasia and their family, so it tends to be a highly relevant, person-centered, clinician-centric conference. I think if you're a researcher, you will come away from this conference with so many fundable projects and international collaborators for that particular project. If you're a therapist, you will come away from the conference with plenty of ideas on how to improve your service, with the backing of evidence, and it may even be…fun. Not only the conference may be fun, but also that the therapy and the rehab that has the evidence can actually help clinicians, I think, remain engaged with their clients, too. So, yeah, I think whether you're a therapist or researcher, you will get a lot from this particular conference.

Janet: And you will have a lot of fun while you're doing it.

Linda: Yeah.

Janet: And that's important.

Linda, you are a role model. You truly are, for all of us whose lives are touched by aphasia, or who work to improve the lives of people with aphasia and their family members. So, as we bring this interview to a close, are there any pearls of wisdom or lessons learned, that you'd like to share with our audience?

Linda: Well, I think I've probably learned a lot of lessons from my career.

Janet: Haven't we all? Haven't we all?

Linda: Yes, absolutely. One trend that I am noticing at the moment is that as our profession ages, maybe, that there are more speech pathologists, and even professors of Speech Pathology, who either develop aphasia, or have family members who have aphasia, and that inside perspective, allows them to tell us what we're doing well, and what we're not doing so well. I've had some opportunities to talk to some of those speech pathologists and get their perspective on aphasia rehabilitation. Certainly, the three things that they keep coming back to is therapist listening, so that they can individualize their therapy to the person's day to day life and their goals; that the therapy needs to be functional, that it needs to be geared towards what the person wants to achieve; and the final thing that they keep saying is that family members need to be involved as well. That not only includes just the spouse, but in younger stroke patients particularly, Brooke Ryan's doing some work in this area, of working with children, of people who've had a stroke and who have aphasia who sometimes have been quite traumatized by finding their mother or father having a stroke. Or from the other side, the parenting with aphasia - having to parent young children when you have aphasia. Families do want to be involved.

So, I always try to think, and to bring it back to that personal thing of, “If I had aphasia, I would want…” If everyone could just reflect on what they would want if they had aphasia, then I think we would be moving more towards a person-centered approach. For example, I think any clinician who gets me as an aphasic client is going to struggle with my husband. Well, in terms of communication partner training, you know, he's just not going to be able to do it, I don't think. I really do not want to tell you the Cinderella story, nor do I want to be describing the Western Aphasia Battery picture description. I sometimes feel as if I'd like to do an advanced health directive – do you do those sort of things where you write down what you want to happen more towards the end of your life?

Janet: We do. And that's a great idea, do not give me the Western Aphasia Battery picture, do not tell me Cinderella.

Linda: That's right. Absolutely. You know, really thinking about, okay, well, if I had aphasia, what services would I want? For therapists to reflect on that and to build their services around that, as well as listening to what their clients want.

Janet: You mentioned the three things that patients with aphasia have said that they'd like the clinicians to do; listen, make the treatment functional, and involve the family. Those are so very, very important. I want to make sure I say that the sentence that you said, or the really the call to action, or the challenge that you're giving all of us, is to ask, “If I had aphasia, I would want…” That's a profound question. Because I suspect most of us go through our lives, thinking that it won't happen to us. But it might. And if it did, what would I want?

Linda: Yeah, yeah. The number of speech pathologists who have a parent with aphasia, sometimes this is the reason why they've come into the profession, and why they’ve come into this interest area. And so, you know, it will happen to our family members, or even to us. So, it helps us to think, rather than thinking of the client as being some other person, it's about making it more person-centered.

Janet: I think about years ago, I don't even recall the situation, but in a graduate class, I was talking about this issue, in not quite as enlightened a way as you are doing now, but I remember telling the students, if I ever have aphasia and you are my clinician, please don't ever make me name pictures. And that's exactly what you're saying here for us to be cognizant of what the treatment envelope is like, not just the specific treatment technique, but the desires, the reality of what the level of recovery could be, and the family members’ desires and needs.

Linda: Yes, absolutely. Yeah, our patients, our clients have a lot to tell us, we really do need to listen to what they're saying.

Janet: I hope we do. I hope that we all learn to listen much better as the days and weeks and years go on in front of us.

This is Janet Patterson, and I'm speaking to you from the VA in Northern California, and along with Aphasia Access, I would like to thank my guest, Linda Worrall, for sharing her knowledge and experiences about IARC with us. I'm especially thankful to Linda, for talking about person-centered aphasia, for having this discussion about things that we can do to make the therapy session more engaging and more relevant for our patients and for their family members. I'm hopeful that each of you will join Linda and many others at IARC 2022. Remember that you can register at www.aphasiaaccess.org.

You can find references and links in the Show Notes from today's podcast interview with Linda Worrall at Aphasia Access under the Resource tab on the homepage. On behalf of Aphasia Access, we thank you for listening to this episode of the Aphasia Access Conversations Podcast Project. For more information on Aphasia Access, and to access our growing library of materials, and to register for IARC 2022 Please go to www.aphasiaaccess.org. If you have an idea for a future podcast topic, please email us at info@aphasiaaccess.org, and thank you again for your ongoing support of Aphasia Access.

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