# Bereaved parents’ perspectives of factors influencing decision-making about place of end-of-life care for children with life-limiting, life-threatening conditions: an all-Ireland qualitative study

## TL;DR

This study explores how parents decide where their child with a serious illness should receive end-of-life care, highlighting the importance of individualized support and early discussions.

## Contribution

The study provides new insights into parental decision-making factors for children's end-of-life care settings, emphasizing the need for personalized approaches and early communication.

## Key findings

- Parents often prefer home for end-of-life care but may change their preference based on circumstances.
- Hospital is frequently the default choice due to insufficient communication about alternatives.
- Family dynamics, including siblings, significantly influence decision-making.

## Abstract

The need for children’s palliative care and end-of-life services is increasing. However, there is limited evidence to inform health and social care professionals about parental preferences for place of end-of-life care for their child, or on factors influencing families in deciding on their preferred place of death for their child. The aim of this study was to explore factors which influence parental decision-making in relation to place of end-of-life care for children with life-limiting, life-threatening conditions, with respect to experiences of end-of-life care in different settings (i.e., home, hospital, hospice).

This is a qualitative study. Semi-structured interviews were conducted with 20 bereaved parents (14 mothers and six fathers) of children with life-limiting, life-threatening conditions. Parents were purposively recruited from six sites inclusive of hospital, home and hospice settings across the Republic of Ireland and Northern Ireland. Interviews were digitally recorded, transcribed verbatim and thematically analysed.

One overarching theme, “child first and foremost”, and three sub-themes of “ideal versus reality: home as place for end-of-life care”; “secure but not settled: hospital as place for end-of-life care”; and “home away from home: hospice as place for end-of-life care” were developed.

Selecting a place of end-of-life care and death for a child is a complex and challenging decision for parents. Important factors which influence parental decision-making around choosing home, hospital, or hospice for a child’s place of end-of-life care included: considering what would be best for their child; home was most often the first preference for parents, but this could change; that hospital was often the default choice due to lack of communication with parents about their options; and the family unit as a whole, including siblings, was an important factor when parents were making the decision. Our findings highlight that an individualised approach to supporting family’s decision-making about place of end-of-life care for their child is required. Early advance care planning could be utilised as an opportunity to begin these conversations.

The online version contains supplementary material available at 10.1186/s12904-025-01922-z.