Help us make a better flow in everyday life - family needs in home-based pediatric palliative care: a qualitative study

Pediatric palliative care focuses on optimizing the quality of life for children with life-limiting or life-threatening conditions and their families. Home-based pediatric palliative care is often recommended as the preferred model of care. To ensure effective home-based care, it is essential to deepen our understanding of the specific needs of families in this context. This study aimed to explore family care and communication needs in home-based pediatric palliative care from the perspective of the parents. This qualitative exploratory study was conducted with five focus groups with a total of 18 parents of children with life-threatening or life-limiting conditions. Data were analyzed using narrative thematic analysis. Four main themes were developed: (1) The healthcare system lacks a comprehensive understanding of family needs; (2) A dedicated coordinator can alleviate the caregiving burden on parents; (3) A hotline to healthcare professionals familiar with the child is essential; and (4) A shared health record system can enhance information sharing and provide parents with a sense of control and oversight. Parents of children with life-limiting or life-threatening conditions face complex caregiving responsibilities while simultaneously navigating the healthcare system, seeking information, and coordinating care. These findings highlight the importance of a dedicated care coordinator in communicating with the various healthcare services involved. Also, parents emphasized the need for streamlined information sharing and easier access to critical health information regarding their child’s condition.