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

McCauley, Rachel, Corcoran, Yvonne orcid logoORCID: 0000-0001-9941-1042, Kiernan, Gemma, Courtney, Eileen and Lambert, Veronica et al. orcid logoORCID: 0000-0003-4396-5462 (2025) Bereaved parents’ perspectives of factors influencing decision-making about place of end-of-life care for children with lifelimiting, life-threatening conditions: an allIreland qualitative study. BMC Palliative Care, 24 (294). ISSN 1472-684X

Abstract
Background: 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). Methods: 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. Results: 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. Conclusions 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.
Metadata
Item Type:Article (Published)
Refereed:Yes
Uncontrolled Keywords:Children’s palliative care, Life-Limiting conditions, Place of End-of-Life care, Qualitative study, Decision making, Paediatric, Pediatric
Subjects:Medical Sciences > Nursing
Medical Sciences > Pediatric nursing
DCU Faculties and Centres:DCU Faculties and Schools > Faculty of Science and Health
DCU Faculties and Schools > Faculty of Science and Health > School of Nursing, Psychotherapy & Community Health
Publisher:BioMed Central Ltd.
Official URL:https://link.springer.com/article/10.1186/s12904-0...
Copyright Information:Authors
ID Code:32278
Deposited On:10 Feb 2026 14:40 by Gordon Kennedy . Last Modified 10 Feb 2026 14:40
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