Children's Complex Care Coalition of North Carolina (4CNC) (2025-2026)

Nearly one in five children in the United States (almost 14 million) have special healthcare needs that require frequent hospital care. After a hospital stay, the transition back to home can be difficult. Problems within service sectors (e.g., limited home health services) and between sectors (e.g., lack of data sharing between social service and health systems) fragment care and place the burden on families to successfully navigate a disjointed system to secure needed services.

This project focused on a trial that compared the effectiveness of high vs. low-intensity hospital-to-home transitional care for 480 hospitalized children with complex health needs in North Carolina. Team members divided into three subteams: 

1. The Community Engagement subteam worked with the study’s nine-member Community Advisory Board (CAB), composed of caregivers of children and youth with special healthcare needs. Team members developed a practical guide that features lessons learned from recruiting and forming the CAB and from more than one year of facilitating the meetings. 
2. The Caregiver Support and Engagement subteam reviewed existing tools measuring caregiver engagement with research initiatives to identify the best tool for use with the project’s CAB. Subteam members also surveyed and conducted qualitative interviews with caregivers who have been involved in research initiatives at Duke to explore their experiences. 
3. The Economic Security and Family Policies subteam reviewed federal and state policies that impact the economic security of families of children with complex care needs along multiple dimensions, including income, wealth, poverty, financial burden, and food and housing insecurity. The team paid special attention to whether the policies are effective, whether they are being used by families of children with disabilities (uptake), and what barriers exist to full uptake and effectiveness.

Timing

Fall 2025 – Spring 2026

Team Outputs

Children’s Complex Care Coalition of North Carolina: The Hospital to Home Transitional Care Study for Children and Youth with Special Health Care Needs (H2H-CYSHCN) (Poster presentation at the Fortin Foundation Bass Connections Showcase, April 15, 2026)

Supporting Children with Complex Health Needs and People who Care for Them (Team profile)

Facilitated community advisory board meetings

Created best practices guide for working with community advisory boards on community-engaged research

Surveys and qualitative interviews with caregivers

See related teams, Children’s Complex Care Coalition of North Carolina (4CNC) (2024-2025).