Realities of Home Care System for Children with Medical Complexity (CMC): A Qualitative Study of Parent Experiences, Barriers, and Alternative Models

Background: Children with medical complexity (CMC) need coordinated home care beyond traditional healthcare, and how parents interact with these systems is central to shaping their children’s care pathways. While family-centered care emphasizes collaboration between providers and families, this study examined how parents engage with home care systems and the impact of these interactions on their children’s care pathways. Methods: A descriptive qualitative design was used, with reflexive thematic analysis. Fifteen parents (13 mothers, 2 fathers) were recruited through pediatric community organizations across Ontario, Canada. Virtual interviews, 45 to 90 minutes in length, explored experiences with care coordination, system interactions, and service navigation. Data were analyzed inductively using NVivo software. Results: Three overarching themes were generated: (1) systemic barriers in pediatric home care, (2) service delivery and information gaps in home care, and (3) Family-Managed Home Care (FMHC) alternative pathways and trade-offs. Limited funding led to inadequate staffing and poor care quality, resulting in some children losing developmental progress. Parents feared that speaking up about care issues could result in losing services. Information gaps and geographic disparities created systematic inequities. FMHC offered enhanced control but transferred substantial administrative burdens to families, creating new forms of stratification based on administrative capacity. Conclusion: Current home care systems for CMC in Ontario create structural barriers that limit family engagement and shift responsibilities onto families, potentially deepening inequities. Meaningful reform requires engaging families as partners in system design and policy development rather than relying on individual-level solutions.