Tag: disability research

Shriver Center Research Promotes Healthy Children and Youth

Shriver Staff member high fives Health U participant

 Last week I mentioned that the timing, topic, and desire to “give back” all contributed to our reasons for enrolling in Shriver Center research. This week we learn why families are excited about participating in the health promotion studies at the Shriver Center with their children. As a parent, I was personally thrilled to see exercise and healthy eating becoming a priority for our children and youth through these creative studies.

Learning about healthy nutrition and physical activity

Studies like Health U. have offered youth with intellectual disabilities a curriculum, materials and regular meetings at the Shriver Center to learn about healthy lifestyles through proper nutrition and physical activity. Participants and parents try out positive food choices, portion control, meal preparation and exercise delivered in an accessible, club-like setting. Parents of participants praised Health U. for creating positive changes in their children.

“My daughter Sara looks at physical activity and eating in a whole new way. She has a foundation to build on now, everything from portion sizes and understanding healthy foods better to taking part in track and field,” said one parent named Robin.

Making friends

Physical activity intervention studies like TUFF have been offered to teens at neighborhood YMCA’s. Kids get to work out and make friends locally, while researchers learn what it takes to keep them active and engaged in a community setting.

Helping researchers learn something new

From the TRAC study, teens and their parents describe how they spend their time and wear accelerometers to track their movement for a week. This helps researchers develop a baseline for physical activity so they can set and measure physical activity gains in future studies.

Acting as community advisors

The SPARC study invited parents and physical education professionals to work as advisors to our research team to name, study, and support the design of a physical activity study for teens with ASD. The result was a social YMCA-based walking club using a curriculum, social stories, pedometers, accelerometers and other tools to engage teens and measure their activity in a fun intervention in the community.

Parent advisor Susan Sutherland explains why she became involved. “I definitely used my son as motivation,” she said. “I wanted to make sure he saw that opportunities would be open to him similar to others.” (SPARC will be profiled in the next Shriver Center Spotlight newsletter coming in March).

About the author

Elaine GabovitchElaine is the Director of Family & Community Partnerships at the E.K. Shriver Center and an instructor in the Department of Family Medicine & Community Health of UMass Medical School and Family Faculty for the Leadership Education in Neurodevelopmental Disabilities (LEND) Program at the Shriver Center.

Getting Involved in Shriver Center Research: What’s In It for Me?

Young boy involved in table top activity with researcher

This month we are  pleased to welcome our guest blogger, Elaine Gabovitch, who will share her personal experience as a parent participating in research at the Shriver Center.

The First Time

I remember the first time I signed up my then-10-year-old son for a research study. Combing through local disability listservs to find tips and resources to help him, I came upon a study posting from the Shriver Center about eating and obesity in children with Autism Spectrum Disorders (ASDs). Something about it caught my eye and caused me to call and find out more. What was it about this particular posting that made me act?

The Timing

Maybe it was because my son was 10 and the timing seemed right. At this age, we had gotten through the earliest, most urgent days of learning about and responding to his disability. We had some things in place that were starting to work. It seemed that we may finally have the time.

The Topic

Maybe it was because the study was eating habits, something that resonated for us. We had struggled through my son eating little more than chicken nuggets and pizza for many years, suffering through gag reflexes from the smells of certain foods. I worried about how to help him eat better. Answering questions might give me a way to make sense of it all, or at least help research learn enough to help kids like mine in the future.

Giving Back

Maybe it was because I wanted to give back to “the village” of people who had helped us. The researchers at the Shriver Center were not the same professionals who assisted our family in the early days, but there was something about helping them understand this thorny problem that felt right.
Whatever the reason was, something tipped my decision scale and we signed up. And it was interesting, fun, and most importantly, easy to do. But the timing had to be right, and we all had to be ready. Once we were, it was a wonderful experience that I encourage families to try.

Years later, I now work at the Shriver Center and think about research a lot. I see many families getting involved in research as I once did. It is gratifying to see them helping to expand Shriver’s knowledge base through taking part in our studies.

There are many reasons to get involved in Shriver Center research that answer the question, “What’s in it for me?” We’ll start to answer that question next week by looking at the Shriver Center’s health promotion studies, such as the one we participated in all those years ago.

About the author

Elaine is the Director of Family & Community Partnerships at the E.K. Shriver Center and an instructor in the Department of Family Medicine & Community Health of UMass Medical School and Family Faculty for the Leadership Education in Neurodevelopmental Disabilities (LEND) Program at the Shriver Center.

Elaine Gabovitch
Elaine Gabovitch