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 project team will advance community-engaged research and advocacy projects for integrating systems of care for children with complex health needs in North Carolina. Stakeholders have highlighted transitions of care as an area in need of system-level improvements. To address these needs, the team will develop transitional care interventions designed to improve family-centered outcomes as CCHN transition from hospital to home.

A promising family-centered measure of health service use is the number of days spent at home outside of medical care settings. Team members will examine days at home (DAH) as an outcome measure for CCHN through systematic review of the literature on the days at home measure and mixed method analyses that integrate quantitative claims-based measurement of DAH with qualitative perspectives from parents of CCHN. 

Concurrent with the examination of DAH as an outcome measure, team members will research how to implement and evaluate hospital-to-home transitional care interventions for CCHN. They will help conduct a comparative effectiveness randomized trial of high- versus low-intensity hospital-to-home transitional care for hospitalized CCHN, including pilot data collection and analysis, survey design and testing, and collaboration with health system care management staff to optimize transitional care workflows and processes.

Team members will also conduct outreach and coordination central to sustaining a community-engaged coalition. They will assist with coordination of 4CNC advisory meetings, participate in research projects aligned with priorities of community partners and conduct outreach to expand representation of parents/families within 4CNC. 

Anticipated Outputs

Pilot mixed-methods data on days at home as an outcome measure of CCHN; systemic review; presentations; updated 4CNC website; optimized transitional care workflows using human-centered design methodologies

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 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. 

Team members will break into two subteams focused on priority topics, such as days at home (e.g., mixed methods analysis, systematic review) and hospital-to-home transitional care interventions (e.g., comparative effectiveness trial, optimizing health system workflows for different levels of transition care intensity). 

Students will gain valuable experience in the fundamentals of research, including formulating research questions, conducting literature reviews and contributing to writing conference abstracts and manuscripts. By being part of ongoing research focused on hospital-to-home transitional care and measurement of days at home, students will learn skills such as writing interview guides, conducting semi-structured interviews, conducting rapid qualitative analyses and integrating multiple data types. By collaborating with community partners on real-world challenges facing the vulnerable CCHN patient population and their families, students will gain experience in community-engaged research and how to advocate for the grassroots 4CNC coalition. 

Timing

Fall 2024 – Spring 2025

• Fall 2024: Complete Institutional Review Board (IRB) submission; complete research training modules; conduct data analysis and literature reviews; interview key partners and subjects; complete reflections on learning and progress
• Spring 2025: Code and analyze data; prepare conference submissions; draft manuscripts for publication; complete reflections on learning and progress

Crediting

Academic credit available for fall and spring semesters

See earlier related team, Children’s Complex Care Coalition of North Carolina (4CNC) (2023-2024).

Image: Baby boy grasping for a cherry in his fatter’s hand, by Ivan Radic, licensed under CC BY 2.0