Health study involves adults with Down syndrome ‘every step of the way’

The transition to adulthood can be a challenging phase for people with Down syndrome, as resources built to support them in their youth and in school begin to dry up.

Marie Moore Channell, associate professor of Speech and Hearing Science at the University of Illinois Urbana-Champaign, is the lead investigator on a new study funded by the National Institutes of Health, which will collect the direct perspectives of young adults with Down syndrome and develop community resources to support their social, mental and physical well-being.

Unlike any previous study on the topic, this one has a steering committee of adults with Down syndrome who’ve helped develop the direction of the study “every step of the way.”

“We realized that the research as a whole is missing that perspective from individuals with Down syndrome themselves,” Channell said. “It’s really a humbling experience as a researcher to take a step back and not say, ‘these are the topics missing in the literature.’ This time, we said, ‘you tell us.’”

Channell and her co-investigators, University of Nebraska-Lincoln’s Susan Loveall and Vanderbilt University’s Meghan Burke, have obtained a two-year, $446,096 grant from the National Institute of Child Health and Human Development for their study, titled “Developing and implementing community based participatory health research with young adults with Down syndrome.”

The research team will cast a wide net, conducting one-to-one Zoom interviews with adults with Down syndrome across the U.S. to better understand their health concerns, and how to best support them.

The study emerged from a separate survey the professors had sent out to caregivers of individuals with Down syndrome, which sought to identify the gaps in support that occur once they reached young adulthood. Adults with Down syndrome tend to live with a caregiver until age 50.

“Families tell us some version of the same thing, over and over: that the supports they were receiving when they were younger and in the schools, are taken away when they’re older,” Channell said.

They decided the topic warranted further investigation. But first, Channell and her team used their networks to form a steering committee with 12 young adults, all of whom have Down syndrome.

One of those steering committee members is Joey Kane, a 30-year-old from Seattle who met Channell at the National Down Syndrome Society Adult Summit a couple years ago. Channell described some of the participatory research she was interested in doing, and Joey was all ears.

“I like to help make a difference,” Kane said. “It’s giving my voice to be heard, and advocating not just for me, but for everyone else who has a disability.”

While the lead researchers have put the study in motion, the steering committee has met with them at least once a week over video calls, sometimes twice to accommodate members living in different time zones.

The health topics they’ve focused on, Channell said, have ranged from securing employment and community living, to improving physical health and self-advocacy skills.

All those priorities resonate with Kane. He lives in an apartment about a mile away from his parents’ house and has two jobs: he serves dinner at the cafeteria in a local nursing home and works the front desk at the Down Syndrome Center of Puget Sound, where he also helps teach in the center’s adult program.

Kane has enjoyed meeting the rest of the committee and learning about their perspectives on health topics. He credited Channell and the other study organizers for making sure everyone is represented.

“What’s really good about Marie and the people doing the study, is they can tell who hasn’t talked yet,” he said. “It makes me happy that everyone’s participating. If everyone participates, we’re going to have a good study.”

Input from the steering committee has shaped the study in critical ways. For one, at the suggestion of the committee, the community resources will likely be geared for professionals who support individuals with Down syndrome, such as healthcare providers, case managers and job coaches.

The virtual interviews will be one-one-one video calls, rather than online surveys. Participants will be able to see questions ahead of time and bring pictures to illustrate their ideas.

“It is a technique we learned about in looking at the research, and that’s one the [steering committee] gravitated toward. It’s called ‘photovoice,’ and it’s been used in similar kinds of community participatory research methods,” Channell said.

The resources could take several forms, but what Channell knows for sure is she’ll be “working with this group every step of the way.” 

“I’ve never done this kind of work before, and it’s been a big learning curve, but really refreshing. Because it feels like we can make an impact a lot faster,” Channell said. “I still highly value the other kinds of research I’ve done, but this is something where it’s built into the project to implement into the community by the end.” 

The investigators will put together a “researcher’s toolkit,” compiling the successful practices and challenges of this participatory research. The team is currently hiring some of the steering committee members as co-researchers, who will be trained to help conduct the one-on-one interviews and take part in day-to-day research tasks.

“I’ve learned so much, and I see the value of connecting with the community, building a relationship and working with them before their research study is designed—not imposing your research questions on the community, we’re so used to doing that,” she said.

“It’s really challenging to change that, but I think it’s what we all should be doing more and more of as researchers.”

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