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

Abstract

Background:
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.

Aim:
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.

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

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

Results:
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.

Conclusion:
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.

Citation

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. https://doi.org/10.1177/02692163211023300

• 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
• DOI: https://doi.org/10.1177/02692163211023300
• Keywords: Paediatrics, palliative care, home care, terminal care, preferred place of death, home care services
• Public URL: http://researchrepository.napier.ac.uk/Output/2779526