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

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

Carr K; Hasson F; McIlfatrick S; Downing J

Child: Care, Health and Development

2021

Paediatric; Advance care planning; Palliative care; Health professionals; life limited

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. While some tools and protocols exist, they were not used in a systematic manner and initiation behaviour was often not guided by them. Initiation was unstandardised, 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.

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