Advisory Board for Tech to Support Medically Complex Kids and their Families in Virginia

Sharing this research study advisory board solicitation — we are looking for disabled adults in addition to caregivers and providers to solicit feedback on what board members would like to see in the way of technology and policy to better support families with ‘medically complex’ kids. We have multiple disabled researchers on the team!

Seeking Community Members to Support a Research Study in Virginia

What is the study about?

Researchers from the University of Virginia and Virginia Tech are organizing a study to understand the needs of parents caring for children with complex medical conditions. Our goal is to learn about the challenges these parents face in finding and receiving help from community services in Virginia. We will use this information to create new technologies, policies, and/or resources to support caregivers from underserved communities.

How can I help?

We are forming a board of community members to assist with the study. This board will meet every other week for 1 hour on Zoom and will be compensated for their time. Board members will help find participants for the study and will provide feedback on the design of the study. You will assist in sharing our findings and designing potential solutions. In the future, we hope to do more research to test the usefulness of these solutions. 

Who can serve on the board? 

• Parents of children with complex medical conditions
• Disabled adults (who had one or more complex medical condition as a child)
• Community resource providers (such as case workers, social workers, and virtual support group administrators) 

Why is this study important? 

Parents of CMC must work with a large number of support services to ensure the safe delivery of care within the home. As a result, parents of CMC report high levels of stress. Research shows that caregivers belonging to one or more minority groups face challenges in receiving help from services in their communities. For this reason, it is important to understand how we can help different caregivers of CMC receive the support they need. We will use this understanding to design effective solutions.

Who do I contact to get involved?

Please email Nora Scheer (wfr4da@virginia.edu). In this email, please include your name and whether you are a caregiver of a child with complex medical needs, an adult who had complex medical needs as a child, or a community resource provider.