What do Krakow, Florence, Edinburgh, Zurich, Aalborg, Sheffield, Slovenia, Montreal, and Boston all have in common? They’ve all hosted the biennial International Aphasia Rehabilitation Conference (IARC) at some point in its esteemed 38-year history. Philadelphia now joins this storied group of locations. It may never be the same given the #RockingAphasia campaign, but more on that later.
I was thrilled to attend not only my first in-person conference since COVID-19 but my first IARC. I’ll offer a quick bit of IARC history as told by Linda Worrall in episode 82 of the Aphasia Access Aphasia Conversations Podcast (https://aphasiaaccess.libsyn.com/about-the-international-aphasia-rehabilitation-conference-a-conversation-with-linda-worrall ), so you're ready to score big the next time they play IARC trivia—something that helped us pass the time while resetting the video stream for the online participants.
IARC is a non-auspiced conference that started when three distinguished aphasia researchers from varying continents, Maria Pachalska from Poland, Renata Whurr from London, and Nancy Helm-Estabrooks from Boston, decided in the early 1980s that there was much to be gained by gathering for an international exchange about aphasia rehabilitation and research. Without having a sponsoring organization, Worrall emphasized that the conference is very organic, very much “driven by the aphasia community”. In fact, she said that this year’s theme, “The Engaged Community” was a reflection of what this conference has become, a conference that has “been pushed around the world, if you like, by this engaged community of aphasia researchers and clinicians.” This year’s host was Aphasia Access, with its President, Tom Sather serving as Program Chair.
I knew the programming was impressive, and I knew that it would be inspiring, but this was unlike any other conference I’ve attended. First, the conference started by offering two aptly named Spotify playlists compiled by the attendees. With Tom Sather’s permission, I can share them with you, and perhaps you’ll find yourself energized as you get through your work day. After reading Dan Levitan’s "This is Your Brain on Music" with Michelle Gravier’s Cal State East Bay’s NRRL Lab this summer, I now understand just how therapeutic these playlists might be:
Secondly, I didn’t expect to have a scientific equation leading off some of the most inspiring opening comments that I have ever heard in my many years of attending meetings. Here you go:
Tom Sather introduced the work of sociologist Èmile Durkheim by describing his theory of “collective effervescence” which refers to the benefit you might feel from a collective way of thinking, feeling, or acting—or “the energy that occurs from coming together as an engaged community”. It’s certainly a quality I have seen occur with aphasia groups, but Tom’s explanation of the equation was that we were about to embark on “three days of a collective hybrid plus a global community of 22 plus countries AND the collective wisdom of 264 plus attendees in person and online here. That gives us an infinite amount of Aphasia Knowledge and Aphasia Opportunity”.
Another unique aspect of the conference was the support of the #RockingAphasia campaign headed by Abi Roper of City, University of London.
There was lots of group effervescing over the painting of rocks with the Twitter handle #RockingAphasia and then leaving them in historic and picturesque spots across Philadelphia. It might be the first time that the famous Rocky statue at the foot of the iconic steps leading to the Philadelphia Art Museum proudly displayed the word aphasia, but it seemed so appropriate—a rock on Rocky saying Rocking Aphasia.
Then there was the programming. I was asked to comment on my “favorite presenters” and I’ll just have to say an emphatic “yes” to that. How do you select a “favorite” among the keynote speakers of Linda Worrall, John Whyte, or Charles Ellis—or among the invited speakers: Suzane Beeke (Better Conversations), Marian Brady (Release study), Katarina Hilari (Superb trial), Jyvette Isaksen (Implementing system-wide change of medical systems via CPT), Keren Kankam (State of aphasia rehabilitation in Ghana), Loraine Obler (Current issues in multilingual aphasia), and Miranda Rose (Impact of dose and intensity on aphasia rehabilitation outcomes). In addition, Nina Simmons-Mackie and Jamie Azios gave an update on the new and expanded edition of the Aphasia Access State of Aphasia foundational paper that will be released later this year. Aura Kagan provided the final oral presentation about their implementation journey on improving communicative access and patient experience in acute stroke care. And that doesn’t even touch on the other remarkable oral presentations or the vast set of posters.
While I’ll stand my ground about saying they were all my favorites, I was deeply moved by the commitment made at this conference to include people with aphasia in the conversation about their priorities for research and to make the content readily accessible to the engaged stakeholders. Another first for me was the request by the IARC conference committee to create an aphasia-friendly flier that summarized the goals and outcomes of the work I presented. They will be compiling this set of accessible research summaries and making them publicly available so individuals with aphasia and their care partners can learn about the research that is being done to address the challenges of living with aphasia. I can see the opportunity to review and discuss these research projects as an empowering aphasia group theme.
But the part of the program that left the deepest impression was the presentation by Jackie Hinckley of Nova Southeastern University, representing Project BRIDGE, a research incubator that promotes participant-engaged aphasia research. Project BRIDGE collaborated with the Philadelphia Aphasia Community (PACT) directed by Gayle DeDe of Temple University to identify the 5 most important research questions that people with aphasia want to hear about. This project worked to gather responses from over 200 PwA, asking them to rank research questions identified in the literature as important to those living with aphasia. Not only did they rank the original set of evidence-based research topics, but 42 more questions were added by the stakeholder group. Next, representatives from 5 different aphasia advocacy groups worked together to sort through the rankings and additional topics in this data set.
Jackie Hinckley reported that the five top most important research questions identified by this review process included:
- How is mental health impacted by aphasia?
- How can stress, anxiety, or frustration affect your ability to speak? What can you do about it?
- What is the best way to train caregivers and others to communicate with people with aphasia?
- What specific speech/language treatments work the best? Or don’t work?
- What difference does social communication group make?
Members of PACT were in attendance for this presentation. They reviewed the IARC program and invited 5 aphasia researchers to respond to these research priorities. Using aphasia-friendly guidelines and a template offered by Project Bridge and PACT, Linda Worrall, Jamie Azios, Marian Brady, Suzanne Beeke, and Jacqueline Laures-Gore each took one question and presented their response based on what we know from the current research. Watching these individuals with aphasia engage so actively in the presentation was a powerful reminder of how vital it is to include PwA in these conversations.
I have two last takeaways. One, Aphasia Access announced a new learning opportunity. They are launching their 8-module, interactive, self-paced course creating a pathway for earning a Person-Centered Care: The Life Participation Approach to Aphasia Knowledge Certification. Find more information here.
Finally, a most memorable moment. Thanks to the gathering of international attendees, a graduate student in Michelle Gravier’s NRRL lab, Haley Hayashi, got to meet UK researcher, Sarah Northcott, and discuss her project, a U.S. replica of Northcott’s survey of the confidence and knowledge of SLPs in the UK for addressing the psychosocial issues facing their clients with aphasia. Sarah was incredibly gracious and joined us, as did another highly esteemed Sarah, Sarah Wallace, on a walk through Love Park and on to the Liberty Bell NPS site. It was Wedding Wednesday and brides and grooms, dressed to the nines, were getting married in the park. Between the discussion of their aphasia research and the admiring of the local color, there was no doubt that we were all experiencing a fair amount of effervescing* on that walk.
So, my recommendation? Start saving for Brisbane, Australia, the location of IARC 2024.
