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Building a partnership between research and parents of children with congenital heart disease

An important part of the Delaware Clinical and Translational Research ACCEL Program is bridging the gap between what researchers do and how community members are involved.

This video features researcher and child psychologist, Erica Sood, PhD, and parents of children with Congenital Heart Disease (CHD) discussing the impact of involving parents in the research to improve parent and family wellbeing following a CHD diagnosis. This partnership has produced a parent support group program, which has made a difference for many families, but it also has improved research outcomes.

“By working with parents and families, I learned the research questions that are most meaningful to them and to the community. I learned how best to engage parents as both participants and partners in my work. And I learned how to best disseminate my results to the community.”

Dr. Erica Sood, pediatric psychologist in the Cardiac Center and Center for Healthcare Delivery Science at Nemours Children’s Health

Community-engaged research requires a relationship between community partners and researchers that addresses local health issues through shared power, negotiation, and commitment to finding a solution. By engaging the communities most affected by the research, we will make the research more locally meaningful and impactful.