SurveyChild: care, health and development2022

Initiation of paediatric advance care planning: Cross-sectional survey of health professionals reported behaviour.

Karen Carr, Felicity Hasson, Sonja McIlfatrick and 1 others

PMID 34873744

WHAT IT FOUND

Experienced UK and Irish health professionals reported initiating paediatric advance care planning late, usually only when a child's health deteriorated.

Doctors took the lead, and most did not use specific tools or protocols, relying instead on intuition and experience to start conversations.

Key findings

01Doctors took the lead in initiating paediatric advance care planning discussions more than any other professional group, regardless of their clinical specialty.

02The majority of respondents reported using no specific tool to initiate these conversations, and 74% reported having no protocols to help them find the words to start.

03Professionals who felt they had received adequate training in how to start these discussions initiated a significantly higher number of conversations in the past year compared to those who felt inadequately trained.

STILL TO COME

How it was doneWhat they found

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What it does not show

The sample was self-selected and drawn from members of specific palliative care organizations, meaning the views may not represent less experienced practitioners or those outside these professional networks. Data were self-reported, which limits generalizability and accuracy compared to observed clinical behaviour. There were no data from non-responders, so it is unknown if those who did not participate have different practices or barriers. The qualitative analysis was limited to categorizing responses into pre-existing groups rather than exploring new themes in depth.

Declared interests

The study was funded by the UK Department of Employment and Learning as part of the lead author's PhD. The authors declared no competing interests.

The easy way to misread this

Do not interpret the high confidence and positive attitudes towards pACP reported by these experienced professionals as evidence that initiation happens early or systematically. The data shows that despite this confidence, most clinicians still delay conversations until a child's health deteriorates and lack the tools or protocols to initiate earlier.

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The study

Participants
140
Certainty of evidence
Low

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    Cite

    Karen Carr, Felicity Hasson, Sonja McIlfatrick, et al. Initiation of paediatric advance care planning: Cross-sectional survey of health professionals reported behaviour. Child: care, health and development. 2022.

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