Pediatric palliative care seeks to promote the well-being of children living with life-limiting or life-threatening illnesses and to support their families. Providing this care in the home is increasingly recognized as the preferred approach. To deliver effective home-based services, it is crucial to understand families’ specific experiences and needs. This study investigated how parents perceive their care and communication needs when receiving pediatric palliative care at home. Using a qualitative exploratory design, five focus group discussions were conducted with 18 parents of children affected by severe or life-limiting conditions. The collected narratives were examined through thematic analysis. The analysis generated four overarching themes: (1) Insufficient awareness within the healthcare system regarding families’ everyday needs; (2) The potential of a designated care coordinator to reduce parents’ workload and stress; (3) The importance of accessible, continuous communication with healthcare professionals who know the child; and (4) The benefits of a unified health record system that promotes information sharing and gives parents greater confidence and oversight. Parents caring for seriously ill children face demanding responsibilities while managing fragmented healthcare structures and seeking reliable information. The findings emphasize the necessity of coordinated communication between healthcare providers and families. A dedicated care coordinator and improved systems for information exchange can enhance continuity, accessibility, and parental empowerment in home-based pediatric palliative care.
