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
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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.
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