Parenting Process in Paediatric Palliative Care for Children With Cancer During Hospitalisation at Home: A Qualitative Study of the Maternal Experience

BACKGROUND: Paediatric palliative care (PPC) addresses the unmet needs of children with life-limiting conditions and their families. In France, PPC for children with cancer is regularly offered in hospital or the home setting, with families often stating a preference for home care. However, hospitalisation at home (HaH) poses significant parenting challenges for mothers, particularly in terms of emotional support, decision-making, and day-to-day care management. AIM: To describe maternal perceptions and experiences regarding parenting styles during the home hospitalisation of a child with cancer in PPC. DESIGN AND METHODS: The study employed a qualitative research approach based on reflexive thematic analysis. RESULTS: Three mothers (n = 3) were included in the study. The central theme and sub-themes, which are rooted in a causal and hierarchical logic, were identified through reflexive thematic analysis. The main theme-the process of parenting in PPC-has three distinct stages. The first encompasses the different forms of parenting, which vary according to circumstances. The second is the foundation or cornerstone of parenting, namely the continuous presence that remains stable over time. The third stage-and the driving force behind parenting-is the guilt that fuels the process. CONCLUSION: This study highlights the complex nature of parenting in PPC, which is characterised by constant adjustments in response to the child's suffering. PPC should be flexible, responsive, and tailored to the needs of children and their families.