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Palliative care
Supporting parents and families of children with life-limiting conditions: the impact of advance care planning
  1. Amy Moody1,
  2. Kathy Lousie Stocks1,
  3. Michael J Tatterton1,2
  1. 1Bluebell Wood Children's Hospice, North Anston, UK
  2. 2School of Nursing and Healthcare Leadership, University of Bradford, Bradford, UK
  1. Correspondence to Dr Michael J Tatterton; michael.tatterton{at}bluebellwood.org

https://doi.org/10.1136/ebnurs-2024-104127

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    Commentary on: Lyon, M. E., Fraser, J. L., Thompkins, J. D., et al (2024). Advance Care Planning for Children With Rare Diseases: A Pilot RCT. Pediatrics, 153(6), e2023064557. https://doi.org/10.1542/peds.2023-064557.

    Implications for research and practice

    • Having access to advance care planning, despite social and financial constraints is imperative. It is evident that in the population included in this study, advance care planning was invaluable for those below the 2021 financial poverty line.

    • Further research is required to determine if the current medical model in the USA is meeting the requirements of caregivers and children with rare diseases.

    Context

    Rare diseases in babies, children and young people (children) are often life-shortening, and children can require constant caregiving. Bösch et al1 report that 82% of children in tertiary hospitals in the USA have a rare disease. This study was designed to establish the efficacy of the …

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    Footnotes

    • X @MrsMoody3010, @MJTatterton

    • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

    • Competing interests MJT is an editor of Evidence-Based Nursing.

    • Provenance and peer review Commissioned; internally peer reviewed.