A scoping review of guidelines and frameworks for advance care planning for adolescents and young adults with life-limiting or life-threatening conditions

Background: Advance care planning discussions are crucial in the management and support of individuals with life-limiting or life-threatening conditions. Few studies have examined best practices for advance care planning with adolescents and young adults. Aim: To identify core components of current...

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Bibliographic Details
Published in:Palliative Medicine 2024-05, Vol.38 (5), p.504-516
Main Authors: Linane, Hannah, Tanjavur, Bhavana, Sullivan, Lindsay
Format: Article
Language:English
Subjects:
Adolescent
Adolescents
Adult
Advance Care Planning - standards
Advance directives
Best practice
Care plans
Female
Frame analysis
Group decision making
Health care
Humans
Life threatening
Literature reviews
Male
Medical personnel
Practice Guidelines as Topic
Systematic review
Teenagers
Terminal Care - standards
Young Adult
Young adults
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Summary:Background: Advance care planning discussions are crucial in the management and support of individuals with life-limiting or life-threatening conditions. Few studies have examined best practices for advance care planning with adolescents and young adults. Aim: To identify core components of current guidelines, frameworks and tools for advance care planning discussions with adolescents and young adults with life-limiting or life-threatening conditions and their families. Design: A scoping review of the literature was conducted followed by a thematic analysis of the included papers. The scoping review was reported according to the Joanna Briggs Institute approach to the conduct of scoping reviews. Data sources: Five databases [Cochrane Central Register of Controlled Trials (CENTRAL), Cochrane Database of Systematic Reviews, PsycInfo, PubMed and Scopus] were searched for English-language papers published between inception until January 2023. Results: The search yielded 2976 papers, of which 9 met the inclusion criteria. Five main themes were identified: (i) utilisation of standardised documents and protocols; (ii) shared decision-making between the adolescents and young adults, their families and the healthcare team; (iii) the importance of open and honest communication with adolescents and young adults during advance care planning discussions; (iv) individualisation and flexibility in the advance care planning process and (v) timing of advance care planning initiation. Conclusions: Results highlight the importance of engaging adolescents and young adults in advance care planning and considering their unique needs when initiating and framing these discussions. Our findings can be used by healthcare professionals to inform advance care planning in this group.
ISSN:0269-2163
1477-030X
DOI:10.1177/02692163241242331