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

Cari Malcolm*, KATHERINE KNIGHTING

*Corresponding author for this work

    Research output: Contribution to journalArticlepeer-review

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    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 have experienced the death of a child at home.
    Aim:
    To explore the value and assess the effectiveness of an innovative, home-based, end-of-life care service as perceived by families who accessed the service.
    Design:
    An qualitative, descriptive design involving in-depth interviews with bereaved parents and thematic framework analysis.
    Setting/participants: 13 bereaved parents of 10 children supported by the service at the end-of-life.
    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. Whilst parents typically did not use the term ‘anticipatory care planning’ in their interviews, they spoke of the initial and ongoing conversations with staff which underpinned and informed end-of-life care.
    Conclusion:
    Parents with lived experiences of caring for a dying child at home offer valuable input to future policy and practice of effective home-based, end-of-life care of children including the essential role of anticipatory care planning and recommendations for shared learning, improving access, and dispelling hospice myths.
    Original languageEnglish
    JournalPalliative Medicine
    Early online date10 Jun 2021
    DOIs
    Publication statusE-pub ahead of print - 10 Jun 2021

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