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

Abstract

BackgroundPerinatal advance care planning (PnACP) is a process of formal decision-making to help families plan for their baby’s care when recognised that they may have a life-limiting condition. While PnACP is recommended in policy, there is a lack of evidence to support implementation and development in the perinatal setting.ObjectiveTo conduct an online survey of UK and Ireland perinatal providers to examine how PnACP is operationalised in current practice.MethodsA secure online questionnaire was developed to collect data on (1) ‘what’ is being implemented, (2) the ‘processes’ being used, (3) perceived impact and (4) unmet support needs. Data were analysed using basic descriptive statistics, thematic analysis and through a conceptual lens of Normalisation Process Theory.ResultsQuestionnaires were completed by 108 health professionals working in 108 maternity and neonatal services, representing 90 organisations across the UK and Ireland. This revealed many resources and examples of good practice to support PnACP. However, there was wide variation in how PnACP was conceptualised and implemented. Existing frameworks, pathways and planning tools are not routinely embedded into care, and respondents identified many barriers that negatively impact the quality of care. They called for better integration of palliative care principles into acute settings and more investment in staff training to support families at existentially difficult times.ConclusionsPriorities for additional perinatal service development include greater sharing of best practice and effective strategies to target the unique challenges of PnACP, such as time-sensitive collaborative working and decision-making in the face of high uncertainty.

Role of children’s hospices in supporting the implementation of perinatal palliative care and advance care planning in the UK

“…Shaw et al 3 note that parents value clear and honest communication, which enables PnACP. Earlier recognition and parental involvement in decision-making lead to improve symptom management and end-of-life care for babies, and better bereavement outcomes for parents and other family members.…”

“…Children’s hospices play an important role in the provision of PPC 3. Recently published works exploring the impact of children’s hospices on PPC found this extended beyond the provision of care 5 6.…”