ArticleBMJ supportive & palliative care2025
Parents' experiences of paediatric end-of-life care in the UK: a multisite qualitative study.
Article in BMJ supportive & palliative care, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
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Who cites it
2 citing papers in PubMed.
- Current situation, challenges and future trends of pediatric palliative care from a multi-dimensional perspective: a narrative review.Translational pediatrics · 2026Review
- Parents' experiences of the financial and employment impacts of their child receiving end-of-life care: a national qualitative study.BMC palliative care · 2025Article
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Authors and funding
18 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesDespite the marked improvement in child mortality over the last two decades, more than 7 million infants, children and young people still die worldwide every year. In the UK, four National Health Service settings care for more than 60% of the children who die each year: neonatal and paediatric intensive care units and children and teenager cancer principal treatment centres. There is limited evidence on how end-of-life care is experienced by parents and how this differs across settings. We aimed to explore parents' experiences of receiving end-of-life care for their child in these settings.
methodsA multisite qualitative study involving in-depth interviews with bereaved parents, analysed using reflexive thematic analysis. Recruitment via 14 National Health Service sites, three children's hospices and two third sector organisations across the UK.
results55 parents participated (37 mothers, 18 fathers), representing 44 children and young people (median age 7 years, range 0-23 years). 42 interviews were conducted. Experiences of care were highly variable. Parents' perceptions of high quality end-of-life care were highlighted within three themes: (1) building the foundations for high quality end-of-life care; (2) working together towards best decisions and care and (3) continuing care after death and into bereavement.
conclusionsBereaved parents' experiences of care at the end of life are too inconsistent. Feeling heard is crucial; without it, there is no foundation on which adequate end-of-life care can be built. Care must be tailored to the circumstances of each family and should continue after a child's death and into bereavement.
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