Bereaved parents’ decision-making about location of end-of-life care for children

Background: Children’s palliative care strategic priorities across the island of Ireland emphasise providing the right care, at the right time,<br/>in the right place. This includes actively involving parents in decision-making and planning location of care for their child. The focus of this research was to<br/>explore factors affecting bereaved parents’ decisions of the place of end-of-life (EoL) care for their child.<br/>Methods: Using a qualitative study design, parents of a child with a life-limiting condition who died across hospital, home, or hospice settings within the<br/>last 4 years, were recruited to take part in semi-structured interviews. Ethical approval was sought and obtained from all study sites. Data were transcribed<br/>and analysed using thematic analysis.<br/>Results: Twenty parents were interviewed across the island of Ireland. Four themes were identified: (1) Familiarity and freedom of home; (2) Safety and<br/>security of hospital; (3) Homeliness and support of hospice; and (4) The child first and foremost. The themes arising give a deeper understanding into<br/>parental decision-making regarding their child’s place of EoL care. Making such a decision was complex and emotionally challenging for all parents. Support,<br/>information about potential choices, and timely guidance from health and social care professionals were crucial.<br/>Conclusions: Communication with and support for parents were both areas that were highlighted as being important to parents when deciding on the<br/>location of EoL care for their child. Key implications from this research confirm the need for additional training for those providing EoL care. The results from<br/>this study will inform the co-production of a decision-making framework for planning the place of EoL care for children and young people.<br/>This research is supported by the Higher Education Authority (HEA) North-South Research Programme, Shared-Island-Fund, on behalf of the Department of<br/>Further and Higher Education, Research Innovation and Science.