The engagement of young people in their own advance care planning process: a systematic narrative synthesis.

Ben Hughes, Mary O'Brien, Anita Flynn, Katherine Knighting

Research output: Contribution to journalReview articlepeer-review

11 Citations (Scopus)
418 Downloads (Pure)

Abstract

Background: An increasing number of young people are living with life-limiting conditions. Current research about advance care planning for young people indicates differing experiences for those involved. Understanding how far young people are engaged in their own advance care plan is important to shape future practice and facilitate young people’s wishes. Aim: To identify and assess the current evidence to determine the barriers and facilitators to the engagement of young people in their own advance care planning process. Design: A systematic narrative synthesis according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Study quality was assessed using a quality assessment framework previously used in similar research. Data sources: CINAHL Complete, MEDLINE, PubMed and PsycINFO were searched for articles published between 1 January 1990 and 31 October 2017. Grey literature was searched using Google Scholar and Open Grey. Results: Most studies related to the engagement of young people were conducted in hospitals or other institutions. Research reported not only the aim to include young people in their own advance care planning but also potential barriers to engagement. Barriers include poor communication, conflict within relationships of those in the planning process and patchy education and training for healthcare professionals. Some existing studies are characterised by a lack of rigorous, high-quality research, limiting their impact. Conclusion: Irrespective of setting, engagement of young people would benefit their advance care planning. More detailed, high-quality research is needed to understand the extent of the barriers to young people’s engagement in their own advance care plan and how to facilitate their involvement.

Original languageEnglish
Pages (from-to)1147-1166
Number of pages20
JournalPalliative Medicine
Volume32
Issue number7
Early online date3 May 2018
DOIs
Publication statusPublished - 1 Jul 2018

Keywords

  • Advance care planning
  • systematic narrative synthesis
  • adolescent
  • young people
  • young adult
  • patient participation

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