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What does effective end-of-life care at home for children look like? A qualitative interview study exploring the perspectives of bereaved parents

Malcolm, Cari; Knighting, Katherine


Cari Malcolm

Katherine Knighting


End-of-life care for children with life-shortening conditions is provided in a range of settings including hospital, hospice and home. What home-based, end-of-life care should entail or what best practice might look like is not widely reported, particularly from the perspective of parents who experienced the death of a child at home.

To explore the value and assess the effectiveness of an innovative model of care providing home-based, end-of-life care as perceived by families who accessed the service.

A qualitative descriptive study design was employed with in-depth semi-structured interviews conducted with bereaved parents.

Thirteen bereaved parents of 10 children supported by the home-based end-of-life care service.

Parents reported effective aspects of end-of-life care provided at home to include: (1) ability to facilitate changes in preferred place of death; (2) trusted relationships with care providers who really know the child and family; (3) provision of child and family-centred care; (4) specialist care and support provided by the service as and when needed; and (5) quality and compassionate death and bereavement care. Parents proposed recommendations for future home-based end-of-life care including shared learning, improving access to home-based care for other families and dispelling hospice myths.

Parents with experience of caring for a dying child at home offer valuable input to future the policy and practice surrounding effective home-based, end-of-life care for children. New models of care or service developments should consider the key components and attributes for effective home-based end-of-life identified by bereaved parents in this study.


Malcolm, C., & Knighting, K. (2021). What does effective end-of-life care at home for children look like? A qualitative interview study exploring the perspectives of bereaved parents. Palliative Medicine, 35(8), 1602-1611.

Journal Article Type Article
Acceptance Date May 19, 2021
Online Publication Date Jun 10, 2021
Publication Date Sep 1, 2021
Deposit Date Jun 10, 2021
Publicly Available Date Jun 10, 2021
Journal Palliative Medicine
Print ISSN 0269-2163
Electronic ISSN 1477-030X
Publisher SAGE Publications
Peer Reviewed Peer Reviewed
Volume 35
Issue 8
Pages 1602-1611
Keywords Paediatrics, palliative care, home care, terminal care, preferred place of death, home care services
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