Family experiences of paediatric palliative care during hospital-at-home: a systematic review

PURPOSE: This systematic review explores the family experiences of hospital-at-home (HaH) care for children in paediatric palliative care (PPC). While the HaH model is increasingly promoted as a safe and cost-effective alternative to hospital-based care, particularly in paediatrics, little is known about how families and children in PPC actually experience this form of care. METHODS: We conducted a comprehensive search across five databases: PsycArticles, PsycInfo, PubMed, ScienceDirect, and Scopus. The search was limited to articles published between 2010 and 2023, in English or French, involving children in PPC aged 0-18 receiving HaH care. RESULTS: Twenty studies were included. Most of them focus on the parents' perspective, describing both the benefits and the emotional challenges of caring for a dying child at home. At home, children receiving PPC, find comfort in their daily routine, the closeness of their loved ones and reassuring familiar surroundings. Parents experience ambivalence between the relief of being together and the burden of care, fatigue and isolation, with mothers often taking on the bulk of the responsibility. Siblings, who are more present than in hospital, oscillate between participation, withdrawal and anxiety about death. Home hospitalisation strengthens family cohesion while accentuating tensions and emotional strain at home. CONCLUSION: Overall, the review highlights the value of HaH care while underscoring the need for more inclusive, child-centred and family-oriented research.