‘Navigating the Complexities of Home Health Care for My Child’: Insights from Parents of Children with Complex Medical Conditions (CMCs)

Background: CMCs represent a growing population of individuals living with complex medical conditions who require significant support in their medical care and activities of daily living. Pediatric home health care (PHHC) provides individualized care to CMCs within their own homes, helping them achieve a better quality of life. Existing care models include traditional home care, where agencies assign staff based on the families’ needs, and Family Managed Home Care, which empowers parents to arrange care themselves. Despite the availability of different home care options, current gaps in funding and services continue to raise concerns about the accessibility and adequacy of PHC support. Objectives: This descriptive qualitative study 1) explored parents' experiences accessing PHHC for their CMCs, 2) identified gaps in PHHC, and 3) examined the impact of navigating PHHC systems on parents’ quality of life. Methods: Semi-structured interviews were conducted with 15 parents of CMCs. The interviews were transcribed and analyzed using a thematic analysis approach. Findings: The interviews highlighted challenges parents face in accessing consistent, high-quality home care, often at the expense of the CMC’s health and family’s well-being. Four overarching themes were generated from the interviews: 1) adapting to the variations in the quality of care provided by home care providers, 2) navigating the complex PHC eligibility assessment process, 3) relying on respite and unpaid caregiving, and 4) experiencing reduced quality of life. Conclusion: The current gaps in PHHC revealed systemic challenges that leave parents feeling trapped and unsupported, underscoring the need for improved support and streamlined processes.