Parental experience of end-of-life care for their infant or child in the United Kingdom

Evidence confirms that provision of end-of-life care for infants, children and young people varies across the United Kingdom, however it is not clear how this variation impacts children and their families. This study aimed to assess parental outcomes and experiences of their infant, child or young person receiving end-of-life care in the United Kingdom through a cross-sectional mixed-methods survey. Bereaved parents were sent a survey, after their infant or child had died and had received end-of-life care in a neonatal or paediatric intensive care unit. The survey yielded qualitative and quantitative data, which were analysed using qualitative content analysis and graphical summaries of quantitative results. Data were integrated using joint display matrices. One hundred sixty nine bereaved parents completed the survey, of which 60% were White British mothers of infants. Overall experiences were positive, however there were some differences between care settings and a minority reported mostly negative experiences. Key components of end-of-life care were not always available and choices over place of care were limited. Experiences of care as death approached were more positive. However, experiences of after death care, such as the use of cooling facilities, were highly variable with some parents expressing regret at not having the chance to have extended time with their child. Parental experiences of end-of-life care varied widely, with key components often not available. Ensuring consistently high-quality care across all settings is essential to support parents’ enduring wellbeing.