Parents’ experiences of paediatric end-of-life care in the UK: a multisite qualitative study

Objectives Despite 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.

Methods A 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.

Results 55 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.

Conclusions Bereaved 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.