Research Team Studying Down Syndrome and Intellectual Disabilities Includes People Living With These Conditions .
BU researchers Ashley Scott (center) and Eric Rubenstein (right) partner with co-researchers like Daniel O’Donnell (left) to include the perspectives of people with intellectual disabilities and Down syndrome in their work. Photo by Jackie Ricciardi.
Research Team Studying Down Syndrome and Intellectual Disabilities Includes People Living With These Conditions
Eric Rubenstein’s lab focuses on issues affecting people with intellectual and developmental disabilities (IDD) across the lifespan, and intentionally includes a co-research team of people with IDD to ensure that this work is grounded in lived experience.
This story originally published on The Brink’s website.
Born with an intellectual disability, Daniel O’Donnell has a job, competes as an athlete, and has so many friends that some call him the “mayor” of the Boston Special Olympics. But even with that independence, medical appointments can be frustrating.
“Sometimes when a doctor asks questions, they ask my mom—and not me,” says O’Donnell, a 25-year-old from Boston’s Hyde Park neighborhood. “But I’m the sick one. Talk to me!”
O’Donnell recently shared that experience with researchers at the Boston University School of Public Health, where he serves not as a study subject, but as part of a research team examining communication and inclusion in healthcare for people with intellectual disabilities and Down syndrome.
The study is being done in the lab of Eric Rubenstein, an SPH associate professor of epidemiology, whose work focuses on improving the lives of people with intellectual and developmental disabilities (IDD), including Down syndrome and autism spectrum disorder.
Rubenstein’s lab studies issues affecting people with IDD across the lifespan—pregnancy (he is currently the principal investigator of a National Institute of Child Health and Human Development study of pregnancy in women with IDD), stress and anxiety, aging, and Alzheimer’s disease, among them. But he believes the research works only if it is grounded in lived experience.
His team uses a model known as co-research, which involves people with intellectual disabilities at every stage of the study, from brainstorming interview questions to drafting easy-to-read summaries of the finished paper. One of O’Donnell’s partners on the healthcare inclusion project is Jennifer Guan, a Greater Boston resident who loves movies, crafting, and traveling; she also has Down syndrome.
While the co-research idea may seem straightforward, Rubenstein says many researchers don’t do it enough.
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