Children's Complex Care Coalition of North Carolina (4CNC) (2025-2026)
Background
Children with complex health needs (CCHN) have medical and social conditions – such as chronic conditions like lung disease and social challenges such as food or housing insecurity – that require medical and nonmedical services. However, 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 burden families to navigate a disjointed system to secure needed services. With an estimated >340,000 Medicaid-insured CCHN in North Carolina, it is essential to accelerate efforts to improve systems of care for these patients.
Cross-sector care integration – provision of coordinated care between medical and nonmedical services across the care continuum, continuously over time, tailored to patient/family preferences – is central to mitigating care fragmentation. One organization dedicated to this approach is the Children’s Complex Care Coalition of North Carolina. This statewide, interdisciplinary coalition is working toward a vision for a family-centered system of care that is integrated across health and nonhealth service sectors and enables all CCHN to thrive.
Project Description
This project team will continue to advance community-engaged research and advocacy projects responsive to the recommendations of key stakeholders for integrating systems of care for children with complex health needs in North Carolina. Members will gain real-world experience in the development and sustainment of a community-engaged coalition through community partnerships and research that advocate for the health of CCHN.
Team members will conduct a comparative effectiveness randomized trial of high vs. low-intensity hospital-to-home transitional care for 480 hospitalized CCHN. Building on previous teams’ pretrial research, students will engage with this trial by producing detailed field notes from Community Advisory Board (CAB) meetings and analyzing the data they collect.
In addition, the team will continue to evaluate number of days at home (DAH) outside of health care settings as a measure of service use for the CCHN population. DAH has shown promise as a meaningful indicator of the success of healthcare interventions for these children. Team members will further explore family perspectives on DAH by developing and deploying a revised parent survey, then linking survey data to actual child health service use.
Concurrently, the team will explore sleep research for parents of CCHN, who are themselves often at risk of chronic health issues due to the heavy workload of managing their children’s care. Research approaches include secondary analysis of sleep data gathered from remote monitoring or wearable devices.
In addition to this research work, team members will participate in community-engaged initiatives and assist with coordination of 4CNC advisory meetings.
Anticipated Outputs
Qualitative analysis of field notes taken during CAB meetings; development and deployment of a revised parent rating survey; survey data linked to child health service use; presentation at research conferences; contributions to manuscript
Student Opportunities
Ideally, this project team will include 2 graduate students and 6 undergraduate students from diverse backgrounds who share a common desire to improve health for vulnerable patient populations. Students from all majors and disciplines are welcome. No prior healthcare or medical experience is necessary, but students with prior experience advocating or caring for patients with complex health needs or past experience in community-engaged research would be assets to the team. Graduate students with experience in the health sector are preferred.
Team members will gain valuable experience in multiple research methods. Students will learn foundational skills including formulating research questions, conducting literature reviews and contributing to conference abstracts and manuscripts. Additionally, students will learn skills such as collecting and organizing field notes, conducting rapid qualitative analyses, working with community research partners and developing research aims. Graduate students will gain experience in leadership and achieving project timelines and deliverables.
Team members will break into 2-3 subteams, each led by an experienced undergraduate or a graduate student. These subteams will be focused on priority topics, such as hospital-to-home transitional care interventions (e.g., comparative effectiveness trial; optimizing health system workflows for different levels of transition care intensity) and days at home (e.g., mixed methods analysis, systematic review).
A graduate student will be selected to serve as project manager.
Selected students will have the opportunity to travel.
Timing
Fall 2025 – Spring 2026
- Fall 2025: Complete Institutional Review Board (IRB) submission; complete research training modules; conduct data analysis and literature reviews; complete qualitative methods training; participate in field notetaking for community advisory board meetings; produce a parent-reported survey on the impact of health visits on days at home
- Spring 2026: Conduct rapid qualitative analyses of community advisory board meeting field notes; assist with the integration of field notes with other data sources; assist with survey data collection; contribute to drafting abstracts and/or manuscripts; write reflections on learning and share works-in-progress
Crediting
Academic credit available for fall and spring semesters
See earlier related team, Children’s Complex Care Coalition of North Carolina (4CNC) (2024-2025).