Bereaved parents’ experiences of support during decision-making about the location of their child’s end-of-life care.

Introduction: The incidence of life-limiting conditions in childhood and need for children’s palliative care services is increasing. Parents and children require support during the palliative care journey, particularly pertaining to information provision and emotional support in decision-making. Despite this, there is a dearth of evidence on how parents and children are supported in decision-making while navigating challenging circumstances.
Aims: This research aims to provide evidence on the influence of formal and informal supports on parental preferences and decision-making about location of their child’s end-of-life care
Methods: A qualitative study design was used to conduct 19 semi-structured interviews, which were thematically analysed. Interviews were conducted with bereaved parents of a child with a life-limiting condition who had died in either hospital, home, or hospice within the last 4 years across the island of Ireland.
Results: Thematic analysis identified that varying levels of support affected decisions made by parents, while deciding on place of their child’s end-of-life care. Parents reported informal social supports from family and friends, and both formal and informal supports from HSCPs, as influencing their decision-making. HSCP support included psychosocial support, provision of timely end-of-life care information, and treating the families compassionately. Familial support included emotional care, child-minding of siblings, and respite for parents. However, parents also discussed challenges in acquiring support, due to communication breakdowns, the timing and delivery of conversations with HSCPs, and the lack of services and information about available services.
Conclusions: Choosing location of end-of-life care for a child is distressing, challenging and often isolating for parents. Parents rely upon several avenues of support during this time. Formal and informal support streams in this context are central to bolstering parental confidence in their decision-making, aswell as facilitating that children and parents receive the right care, at the right time, in the right place.