Initiation of Paediatric Advance Care Planning: Cross Sectional Survey of Health professionals reported behaviour

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Background: Globally, initiation of paediatric advance care planning discussions is advocated early in the illness trajectory; however, evidence suggests it occurs at crisis points or close to end of life. Few studies have been undertaken to ascertain the prevalence and determinants of behaviour related to initiation by the healthcare professional. Method: Underpinned by the Capability, Opportunity, Motivation–Behaviour (COM-B) model for behaviour change, a cross-sectional online survey was conducted in United Kingdom and Ireland using a purposive sample of health professionals. Descriptive and inferential statistics were applied and nonparametric statistical analysis used. Open-ended questions were mapped and correlations between COM-B and demographic profiles identified. Results: Responses (n = 140): Paediatric advance care planning was viewed positively; however, initiation practices were found to be influenced by wide ranging diagnoses and disease trajectories. Whilst some tools and protocols exist, they were not used in a systematic manner, and initiation behaviour was often not guided by them. Initiation was unstandardized, individually led, guided by intuition and experience and based on a range of prerequisites. Such behaviour, combined with inconsistencies in professional development, resulted in varying practice when managing clinical deterioration. Professionals who felt adequately trained initiated more conversations (capability). Those working in palliative care specialties, hospice settings and doctors initiated more discussions (opportunity). There was no difference in Motivation between professions, clinical settings or specialisms, although 25% (n = 35) of responses indicated discomfort discussing death and 34% (n = 49) worried about families' emotional reaction. Conclusion: Although advocated, paediatric advance care planning is a complex process, commonly triggered by the physical deterioration and rarely underpinned by support tools. The COM-B framework was useful in identifying fundamental differences in initiation behaviour; however, further research is required to explore the complexity of initiation behaviour and the system within which the care is being delivered to identify influences on initiation.

Original languageEnglish
Pages (from-to)423-434
Number of pages12
JournalChild: Care, Health and Development
Issue number3
Early online date6 Dec 2021
Publication statusPublished (in print/issue) - 1 May 2022

Bibliographical note

Funding Information:
The authors would like to thank the health professionals who advised and provided data and to Dr. Lou Atkins for her expert advice. The author wishes to acknowledge funding received from Department for the Economy (DfE) postgraduate studentship programme which enabled the study, of which this paper reports on one phase.

Funding Information:
This work was funded by the UK Department of Employment and Learning (DEL) awarded to the lead author to undertake this research as part of a PhD.

Publisher Copyright:
© 2021 The Authors. Child: Care, Health and Development published by John Wiley & Sons Ltd.


  • Paediatric
  • Advance care planning
  • Health professionals
  • Palliative care
  • Life limited
  • life limited
  • health professionals
  • advance care planning
  • palliative care
  • paediatric
  • Pediatrics, Perinatology and Child Health
  • Developmental and Educational Psychology
  • Public Health, Environmental and Occupational Health


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