• Palliative medicine · Jun 2023

    Spiritual, religious, and existential concerns of children and young people with life-limiting and life-threatening conditions: A qualitative interview study.

    • Hannah May Scott, Lucy Coombes, Debbie Braybrook, Anna Roach, Daney Harðardóttir, Katherine Bristowe, Clare Ellis-Smith, Julia Downing, Fliss Em Murtagh, Bobbie Farsides, Lorna K Fraser, Myra Bluebond-Langner, and Richard Harding.
    • Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, Cicely Saunders Institute, King's College London, London, UK.
    • Palliat Med. 2023 Jun 1; 37 (6): 856865856-865.

    BackgroundDespite being a core domain of palliative care, primary data on spiritual and existential concerns has rarely been collected among children with life-limiting and life-threatening conditions and their families. Existing evidence has tended to focus on the religious aspects among children with cancer.AimTo identify the spiritual needs of children with life-limiting and life-threatening conditions.DesignCross-sectional semi-structured, qualitative interview study with children, families and health and social care professionals. Verbatim transcripts were analysed using Framework analysis.Setting/ParticipantsPurposively sampled children with life-limiting and life-threatening conditions, their parents and siblings, health and social care professionals recruited from six hospitals and three children's hospices in the UK, and commissioners of paediatric palliative care services recruited through networks and a national charity.ResultsOne hundred six participants were interviewed: 26 children (5-17 years), 53 family members (parents/carers of children 0-17 years and siblings (5-17 years)), 27 professionals (health and social care professionals and commissioners of paediatric palliative care). Themes included: living life to the fullest, meaning of life and leaving a legacy, uncertainty about the future, determination to survive, accepting or fighting the future and role of religion. Children as young as 5 years old identified needs or concerns in the spiritual domain of care.ConclusionsAddressing spiritual concerns is essential to providing child- and family-centred palliative care. Eliciting spiritual concerns may enable health and social care professionals to identify the things that can support and enhance a meaningful life and legacy for children and their families.

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