Background Advance care planning (ACP) for adults has been widely practised in the United States, Canada, Australia, and New Zealand and has been embedded in the United Kingdom (UK) since 2005 (Dixon & Knapp, 2020; Stein & Fineberg, 2013; Hughes, O’Brien, Flynn, et al., 2018; Hayhoe, Howe, Gillick, et al., 2011). Approximately 99,000 children and young people in the UK have a life-limiting or life-threatening condition and may benefit from ACP (Fraser, Gibson-Smith, Jarvis, et al., 2020). However, little is understood about engaging young people in their own ACP from the different perspectives of those involved in the process.
Aim(s) To explore the views and experiences of young people, their parents/carers and healthcare professionals in the advance care planning process. Objectives were to explore both optimal timing of ACP discussions and facilitators and barriers to engaging young people in their care planning.
Methods A qualitative multiple case study research design was used to recruit participants, with young people as the unit of analysis. Data were collected using semi-structured interviews and analysed using thematic analysis and critical discourse analysis.
Results Views and experiences were mixed across the case studies. ACP should be initiated when young people are in their mid-teens, their condition is stable, and prior to transition to adult care. Facilitators to engagement were reported to be age- and developmentally-appropriate communication, relationships developed prior to initiating ACP, and support for everyone in the process. Perceived hierarchies of power and potential for disjointed communication and relationships can lead to misperception of ACP, resulting in barriers to engaging young people and negative experiences of the process.
Conclusions Exploration and understanding of views and experiences of different, concurrent participant groups has relevance for policy and practice. Understanding optimal timing of ACP discussions and the pivotal roles of communication, relationships, and organisational structure and culture, can create facilitators or barriers to engaging young people, in their own care planning.
This study was completed as a PhD, which was funded by Edge Hill University. There are no conflicts of interest.
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