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

Abstract

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.

Advance care planning in perinatal settings: national survey of implementation using Normalisation Process Theory

“…To our knowledge, this is the first study to examine implementation of PnACP across perinatal care services. Consistent with studies in paediatric settings, the findings show that many services have engaged positively with advance care planning, but have unmet support needs regarding shared decision-making and collaborative working 19 29. However, they also reveal additional challenges, related to the high uncertainty, short window for decision-making and liminal status of babies (situated at the boundaries of birth, services and care goals).…”

Pediatric Advance Care Planning: A Scoping Review

“…The first step is having a systematic approach to identifying children with pACP needs, and creating the space and time in which to provide pACP. Perceived adequate training and settings conducive to these conversations appear to support identification of children with pACP needs to initiate conversations [77]. Clinicians' perceived triggers to initiate these conversations are primarily deterioration in the health of the child, followed by communication, parent cues, and diagnosis and paediatric intensive care unit admission [77].…”

“…Perceived adequate training and settings conducive to these conversations appear to support identification of children with pACP needs to initiate conversations [77]. Clinicians' perceived triggers to initiate these conversations are primarily deterioration in the health of the child, followed by communication, parent cues, and diagnosis and paediatric intensive care unit admission [77]. Secondly, clinicians need to have an opportunity to practice and be mentored in communication practices and conversation tools that will be family and child centered.…”