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. 

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 team seeks to help the Children’s Complex Care Coalition of North Carolina (4CNC) improve systems of care for CCHN through two main objectives: advance community-engaged research and advocacy projects responsive to the needs of CCHN and their caregivers for integrating systems of care in North Carolina; and help develop and sustain a community-engaged coalition to advocate for the health of CCHN.

Examples of community-engaged research projects that will be available for team members include efforts to quantitatively measure the frequency of positive family-centered outcomes (days spent at home outside of medical settings) experienced by CCHN using health care claims data, and qualitatively explore the perspectives of parents of CCHN to better understand what contributes to having good days at home. Additional research opportunities aligned with the goals of 4CNC will be offered as they arise and based on student interest and availability.

The team will also conduct outreach and coordination for 4CNC and participate in research projects aligned with the needs and priorities of its community partners. Team members will assist with project management and outreach to expand representation of parents, caregivers and families within the 4CNC coalition and help develop a process for linking current and future students involved with 4CNC to other community partners with similar goals.

Anticipated Outputs

Data on family-centered outcomes; interviews on family perspectives; presentation for research conferences; updated 4CNC website; project directory; role creation for future students at 4CNC

Student Opportunities

Ideally, this project team will include 1 graduate student and 6 undergraduate students from diverse backgrounds who share a common desire to improve health for vulnerable patient populations. 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. 

Undergraduates from all majors and disciplines are welcome, and no prior healthcare or medical experience is necessary. A graduate student with experience in the health sector would preferred (e.g., health policy, nursing, medical).

Students will gain experience working with community partners to address the real-world challenges facing a vulnerable patient population and their families. Specifically, students will gain experience working with community members on research and advocacy projects; apply multiple research methods toward community-engaged initiatives (e.g., qualitative, quantitative, mixed methods and community-engaged research); and acquire skills for sustaining a diverse grassroots community coalition with a shared purpose among participants. 

Students will also have opportunities to contribute to dissemination of learning (e.g., publications, posters). Students from the health sciences may also be able to contribute to pilot testing patient/family-level care interventions and reviewing health records for analyses.

Nikhita Nanduri and Rose Lee will serve as project managers. However, one additional graduate student will be selected as the third project manager.

Timing

Fall 2023 – Spring 2024

• Fall 2023: Conduct interviews with parents; code interviews; analyze healthcare insurance claim data
• Spring 2024: Continue coding and analysis; draw conclusions on collected data; draft manuscripts for publication

Crediting

Academic credit available for fall and spring semesters