Children’s Complex Care Coalition of North Carolina (4CNC) (2026-2027)

Background

Children with complex health needs (CCHN) have both medical and social challenges that require intensive, coordinated support across healthcare, education, family services and community systems. These children rely on a variety of services, and fragmentation across systems of care places heavy burdens on families, who must navigate challenges such as insurance barriers, service silos and inconsistent provider communication.

More than 340,000 Medicaid-insured children in North Carolina are estimated to have complex health needs. Stakeholder convenings in 2021, which involved 90 organizations across the state, highlighted systemic gaps and the need for a more family-centered, integrated approach to care. To advance such a system, meaningful engagement of caregivers and community partners is essential. Measuring that engagement is equally important, as it helps determine whether research and health system initiatives are authentically serving the needs of CCHN families.

Project Description

Previous Bass Connections teams have evaluated methods of transitional care from hospital to home, assessed “healthy days spent at home” as an outcome measure and built a statewide community advisory board (CAB). The next step is to strengthen and formalize tools for measuring caregiver engagement and to continue supporting a major clinical trial focused on hospital-to-home transitions.

The 2026–2027 project team will pursue two core aims:

Advance the science of stakeholder engagement measurement
Working in partnership with Family Voices, a national family advocacy organization, the team will pilot test the Family Engagement in Systems Assessment Tool (FESAT) among 20–30 caregivers of CCHN receiving care at Duke Health. This psychometric study will evaluate the reliability and validity of the FESAT instrument and contribute to developing evidence-based resources for measuring engagement in research and systems-level initiatives. The team will also conduct a scoping review of existing measurement tools to situate the FESAT within the broader literature.

Strengthen community-engaged research and support a major clinical trial
The team will continue supporting a randomized controlled trial comparing high- vs low-intensity hospital-to-home transitional care for 480 CCHN at Duke and University of North Carolina health systems. Team members will:

Collect structured field notes from monthly CAB meetings
Participate in qualitative data collection and analysis
Engage caregivers serving on the CAB and help manage meeting logistics
Collaborate with care management teams to refine clinical workflows

Anticipated Outputs

Pilot study results assessing the psychometric properties of the FESAT instrument
Scoping review of published stakeholder engagement measurement tools
Rapid qualitative analyses of CAB meeting field notes to support mixed-methods evaluation of the hospital-to-home trial
Contributions to conference abstracts and manuscripts
Strengthened community partnerships and engagement structures

Student Opportunities

Ideally, this team will include 2 graduate students and 6 undergraduate students. All majors are welcome — no prior experience in health sciences is required. Students with interests in health policy and advocacy, community-engaged research, pediatrics, disability studies, or qualitative or mixed-methods research or are encouraged to apply.

Students will benefit from collaboration with caregivers, clinicians, state agencies and advocacy groups. They will learn to conduct literature reviews, recruit and engage study participants, analyze qualitative and mixed-methods data, perform psychometric evaluation and communicate findings through abstracts, manuscripts and policy documents. Graduate students will gain experience in project management, team leadership and research dissemination.

Timing

Fall 2026 – Spring 2027

Fall 2026:

Complete IRB modules
Review study protocols
Begin FESAT data collection
Conduct literature review and qualitative methods training
Take structured field notes for CAB meetings

Spring 2027:

Analyze FESAT data
Conduct rapid qualitative analyses of CAB notes
Integrate qualitative findings into the hospital-to-home trial’s mixed-methods evaluation
Contribute to abstracts and manuscripts

Crediting

Academic credit available for fall and spring semesters