Background: With improving technology, children are surviving with increasingly complex medical conditions, and most are living at home. Given the shortage of home-based clinicians for children with medical complexity (CMC), parents often provide nearly 24/7 support with few if any breaks, resulting in poor long-term mental and physical health outcomes. Studies have found that respite – supports and resources that provide direct care so parents can rest – can foster greater resilience and longevity for those parents. This qualitative study aimed to identify how parents of CMC find respite and recharge. We anticipated that key themes would include a lack of opportunities for rest and recharge, including inadequate home care.

Methods: This multi-site, cross-sectional qualitative study included semi-structured interviews with parents of CMC receiving care from the pediatric palliative care team or the pediatric complex care team at two academic children’s hospitals in Boston, Massachusetts and with home-based clinicians (HBC) working in those children’s households. Interviews explored 4 domains: work of care, rest and sleep, recharge, and engagement with the existing respite care system, including home care. Qualitative data was analyzed using rapid qualitative analysis and mixed inductive-deductive thematic analysis. Data were analyzed by an interprofessional research team with expertise in pediatric palliative care, pediatric complex care, and qualitative methods.

Results: Twenty parents of 19 children and 8 HBC participated. Parents confirmed the incessant work of care and the lack of respite, with three themes related to barriers to home care: (1) overall inaccessibility of HBC, (2) mismatch between families’ needs (e.g., number of hours’ coverage, time of day, intensity of care tasks) and clinician availability, and (3) burden on parents to train home-based clinicians on the unique needs of their child. HBC reported overwhelming case-loads and inadequate incentivization for HBC. Both parents and HBC advocated for improved resource navigation to match children and their parents with appropriate home care providers.

Conclusion: Parents of CMC lack opportunities for rest and recharge. In concept, home health care can be a key tool for providing effective respite services, yet parents and home-based clinicians report barriers to clinicians providing effective respite in the home. The findings from this qualitative study should inform improved resource development as well as reform of pediatric home care policy, including Medicaid and CHIP.