Parent-to-parent peer navigation to improve respite access for children with medical complexity and their parent caregivers

/ABSTRACT The rapidly growing population of >1 million children with medical complexity (CMC) confers 40% of pediatric healthcare costs, yet this calculation does not account for most of their intensive care. Parents and other family caregivers provide 24/7 care with minimal assistance and no breaks. As medical innovation enables CMC to live longer, parents’ constant work of care over decades jeopardizes their physical and mental health, their capacity to safely care for their children, and thus, the parent workforce on which the U.S. healthcare system depends. CMC parents report that respite – short-term direct care allowing caregivers a break – is critical to their well- being and to sustaining caregiving over time. Despite this, most CMC parents lack access to respite. To date, predictors and patterns of respite access nationally remain unknown, and there have been no rigorous intervention studies targeting improved access. Augmenting respite access for this stigmatized, understudied population is an urgent child health research priority. In my two-center, qualitative study of CMC parent respite experiences, parents reported no bandwidth to pursue respite care and trust only other parents to navigate resources. In response, I co-designed the first parent-to-parent peer navigation intervention to improve respite access. RECHArge (Navigating REspite REsources for parents of CHildren with medical complexity to improve Access) trains and employs CMC parent navigators to empower and guide CMC parents in accessing respite services. The proposed five-year research plan aligns with key NICHD research priorities to pursue three Specific Aims: (1) co-design and iteratively refine the RECHArge navigator training curriculum and corresponding intervention manual, (2) pilot test RECHArge to evaluate feasibility/acceptability and explore preliminary effects on respite access and parent/family well-being at two Massachusetts-based sites, and (3) identify predictors and patterns of respite access among CMC parents nationally with a focus on social determinants of health (SDOH). As an M.D.-Ph.D. investigator with training in pediatric palliative care, complex care, and anthropology, I am uniquely positioned to conduct the proposed study. Nonetheless, I need new skills for a career in intervention science. My four Training Aims fill important gaps in my knowledge and experience to prepare me to transition to career independence: (1) user-centered curriculum design, (2) RCT design and conduct, (3) social determinants of health measurement and analysis, and (4) pediatric palliative care leadership. I aspire to become an independent physician-investigator at the intersection of pediatric palliative care and pediatric complex care. Successful completion of the proposed research and training aims will prepare me to develop a multi-site, R01-funded efficacy trial. Accordingly, this project is the essential next step toward my long-term career goal of building an independent research program to improve well-being and quality of life for CMC parents and thus quality of care for the children to whom they dedicate their lives. Project Number: 1K23HD119368-01 | Fiscal Year: 2025 | NIH Institute/Center: Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) | Principal Investigator: Amy Porter | Institution: MASSACHUSETTS GENERAL HOSPITAL, BOSTON, MA | Award Amount: $170,640 | Activity Code: K23 | Study Section: Health, Behavior, and Context Study Section[CHHD-M] View on NIH RePORTER: https://reporter.nih.gov/project-details/1K23HD11936801