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Understanding advance care planning for children and young people: a survey of health professionals

07 September 2023
Volume 32 · Issue 16



A range of polices, documentation, and practices are associated with advance care planning. However, there is a shortage of research to understand advance care planning from a professional viewpoint.


To explore the views and experiences of health professionals of the advance care planning process with children and young people.


An online questionnaire was used to collect data, which were analysed thematically.


Key findings related to barriers and facilitators to initiating and documenting advance care planning: understanding the process and the condition of the patient; how advance care planning works in practice; and access to relevant, affordable training options.


Additional training and standardised documentation can help support the initiation and use of advance care planning, reduce misperceptions, and generate greater confidence in participating in the process. A larger multidisciplinary team, with better communication, will support improved relationships between professionals which will filter down to the families.

Advance care planning (also referred to as ‘anticipatory care planning’) engages patients in their own care decisions by helping them share personal wishes and goals for future care in case of serious illness and loss of capacity (Sudore et al, 2017). It encompasses discussing beliefs, values, feelings, and social circumstances to help them live and die the way they would like (Gold Standards Framework, 2018). In the UK, at least 86 000, and potentially up to 99 000, children and young people (CYP) with a life-limiting or life-threatening condition may benefit from advance care planning; this number has approximately doubled in under a decade (Fraser et al, 2020; Together for Short Lives, 2023).

Health professionals value advance care planning and attempt to engage relevant stakeholders in the discussion and documentation of care planning to understand the wishes of CYP and their parents (Fahner et al, 2021). Previous research (Hughes et al, 2018; Basu et al, 2021; Hughes et al, 2022) identified the potential for misperception of advance care planning by non-professionals and the important role of communication in the process. However, it is not known how far health professionals could influence this misperception, the support mechanisms and training opportunities they would like, or the range of different professionals involved in the care planning process.

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