Collaboration over consultation
Stroke survivors value relationships, capacity-oriented rehab research, UC study finds
New University of Cincinnati research found stroke survivors participating in rehabilitation research prefer an approach that prioritizes shared decision-making, peer relationships and a focus on what they can accomplish over one that emphasizes their deficits.
The research, led by corresponding author Sarah Schwab-Farrell, PhD, was recently published in the journal Health Expectations.
How did this research begin?
Sarah Schwab-Farrell, PhD. Photo/University of Cincinnati.
Schwab-Farrell specializes in physical therapy and experimental psychology. Her research has focused on carefully designed studies that collect data about how people with disability move, including capabilities of those who have had strokes.
While conducting studies over the past several years, she noticed participants seemed to not find the research as enjoyable or engaging.
“Participants found it interesting to be immersed in virtual reality or use motion capture, but they would leave not really feeling like they understood more about their disability or how the carefully controlled data we collected would practically help other people with disability,” said Schwab-Farrell, assistant professor in UC’s College of Allied Health Sciences.
Around the same time, Schwab-Farrell was engaging further in disability studies literature that seeks to prioritize the voices of people with disability.
“I gradually started to gain an understanding that if I really wanted to be an impactful disability researcher, I needed to not only study disability but also make sure that disabled voices were an active part of the research created,” she said. “The scientific impact and merit of a study matter in an academic context, but impactful research should also matter to the people whose lives are directly affected by the outcomes of research.”
Through this work, Schwab-Farrell identified that she had brought her research expertise to studies, but the pragmatic lived experience of people with disabilities had been missing.
I think it is important for researchers to...find ways that ‘success’ can occur in studies or ways that de-emphasize individual deficits.
Sarah Schwab-Farrell, PhD
What does the research look like?
To address this missing component, Schwab-Farrell and colleagues designed a two-year project focused on building a study from scratch with co-researchers who have had a stroke.
In the first-year discovery phase, the team conducted four iterative focus groups with five individuals who had participated in an average of eight prior stroke research studies at UC.
“We wanted to get a handle on what people with stroke value in research, their likes and dislikes,” Schwab-Farrell said. “It was really important that this group was able to draw on a wide variety of prior research experiences to share desired study features and so that a wide range of stroke-related disability was represented.”
What did the researchers find?
Schwab-Farrell said the most impactful finding from the focus groups for her was learning that participants value peer relationships and would like to see relationships more deeply integrated into study designs.
“After stroke, relationships change, and people with stroke build a new support network,” she said. “For those who are involved in research experiences, researchers become part of that support network.”
The participant experts also emphasized the value in being a fully informed participant, meaning they know potential study benefits, relevance and how this work could help other folks down the road.
“Further, individuals with stroke appreciated capacity-oriented studies, or studies that emphasize what people with stroke can do rather than focus exclusively on deficits,” Schwab-Farrell said. “I think it is important for researchers to address this and find ways that ‘success’ can occur in studies or ways that de-emphasize individual deficits.”
Collaboration should be more than consultative and checking a box, but genuinely involve people with disability in all aspects of the study design/production.
Sarah Schwab-Farrell, PhD
What are the next steps?
Schwab-Farrell and her team of academic and stroke community researchers are now using their first-year findings to design a physical or occupational therapy study that is meaningful and relevant to participants.
“We had our first co-design workshop last month, and our second workshop will occur later in October where we are going to determine our research question,” she said. “We already have some great ideas floating around, so I am excited to see what the group comes up with.”
On a larger scale, Schwab-Farrell said the findings can be applied to any stroke or disability researchers looking to make their studies more collaborative.
“Collaboration should be more than consultative and checking a box, but genuinely involve people with disability in all aspects of the study design/production, from the development of a research question all the way to dissemination/translation,” she said.
The next groundbreaking discovery
UC is a powerhouse of discovery and impact as a Carnegie 1 research institution. From pioneering medical research to transformative engineering and social innovation, our faculty and students drive progress that reaches across the world.
Featured illustration at top of therapists working with patients on various physical therapy exercises. Photo/Rudzhan Nagiev/iStock Photo.
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