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Paediatric advance care planning in life-limiting conditions: scoping review of parent experiences
  1. Helen Elizabeth Bennett1,
  2. Sue Duke2 and
  3. Alison Richardson3
  1. 1Alexander Devine Children's Hospice Service, Maidenhead, UK
  2. 2School of Health Sciences, Southampton University Hospitals NHS Trust, Southampton, Southampton, UK
  3. 3Cancer Nursing and End of Life Care, Southampton University Hospitals NHS Trust, Southampton, Southampton, UK
  1. Correspondence to Dr Helen Elizabeth Bennett, Alexander Devine Children's Hospice Service, Maidenhead SL6 3LU, UK; helenb{at}


Background Advance care planning is considered best practice for children and young people with life-limiting conditions but there is limited evidence how parents’ perceive, understand and engage with the process.

Aim To understand parents’ experience of advance care planning for a child or young person with a life-limiting condition.

Design Scoping review, theoretically informed by Family Sense of Coherence. Parents’ experience was conceptualised in terms of meaningfulness, comprehensibility and manageability.

Data sources Electronic databases Medline, CINAHL and PyschINFO were searched for studies published between 1990 and 2021, using MeSH and broad-base terms.

Results 150 citations were identified and screened; 15 studies were included: qualitative (n=10), survey (n=3) and participatory research (n=2). Parents’ experience of advance care planning was contextualised by their family values and beliefs, needs and goals and the day-to-day impact of caring for their child and family. They valued conversations, which helped them to maximise their child’s quality of life and minimise their suffering. They preferred flexible, rather than definitive decisions about end-of-life care and treatment.

Conclusions Advance care planning which solely focuses on treatment decisions is at odds with parents’ concerns about the current and future impact of illness on their child and family. Parents want advance care planning for their child to reflect what matters to them as a family. Future longitudinal and comparative studies are needed to understand the influence of advance care planning on parental decision-making over time and how social, cultural and contextual nuances influence parental experience.

  • end of life care
  • terminal care
  • paediatrics

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  • Contributors HEB conceived and designed the paper and analysis; undertook the literature search and assessed papers for eligibility; extracted the data and performed the analysis; and wrote the paper. SD conceived and designed the paper and analysis; assessed papers for eligibility; extracted the data and performed the analysis; and wrote the paper. AR verified the data and analysis and wrote the paper.

  • 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 None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.