“We’re teetering on unsteady ground” parents’ experiences of accessing 24/7 paediatric end-of-life care:a qualitative study

Background: Providing high quality around-the-clock care, is key to supporting families in their preferred place of care. Changing symptoms and parents’ distress cannot wait for ‘opening hours’. Yet in the UK, 24/7 children’s end-of-life care remains a significant postcode lottery. To inform equitable service development this study explored parents’ experiences accessing 24/7 paediatric palliative care, their expectations and needs. Methods: Qualitative study using in-depth interviews, analysed using thematic analysis. Parents in one region of England, were eligible if their child had a life-limiting condition and end-of-life care was planned, or if they were bereaved parents whose child had died within the previous 3–36 months. Results: Twenty-six parents were interviewed, 13 currently caring for their child and 13 bereaved parents. Two themes were developed: “Scaffolded for uncertainty and crisis” and “Falling through the service gaps”. Most parents want seamless 24/7 end-of-life care for their child at home and to avoid hospital admissions. Despite being desperate to be home and feeling unsafe in hospital, service gaps mean, for some families, there is no option other than their child dying as an inpatient. Conclusion: The study found marked inequity in parent’s experiences. Parents are confident when supported by a trusted 24/7 team with experience delivering palliative care, that provides phone support, face-to-face nursing and access to specialist advice. Hospital staff need improved training and consistent support from specialist palliative care teams. Further research with professionals is needed to understand the local and regional barriers that are preventing this support being available to all families.