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

Abstract

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.