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.
Funder
Birmingham Women's and Children's Hospital Charity
Subject
Obstetrics and Gynecology,General Medicine,Pediatrics, Perinatology and Child Health
Reference35 articles.
1. National Institute of Clinical Excellence (NICE) . End of life care for infants, children and young people with life-limiting conditions: planning and management: NICE guideline (Ng61]. 2016. Available: https://www.nice.org.uk/guidance/NG61/ [Accessed 03 Feb 2023].
2. Together for Short Lives . A perinatal pathway for babies with palliative care needs. 2nd ed. Bristol: Together for Short Lives, 2017.
3. Downie J , Kerr-Elliott T , Craig F . Advance care planning [Chapter 13]. In: Mancini A , Price J , Kerr-Elliott T , eds. Neonatal palliative care for nurses. Switzerland: Springer Nature, 2020.
4. Kilby MD , Pretlove SJ , Bedford Russell AR . Multidisciplinary palliative care in unborn and newborn babies. BMJ 2011;342:bmj.d1808. doi:10.1136/bmj.d1808
5. Fraser L , Gibson-Smith D , Jarvis S , et al . 'Make every child count’. estimating current and future prevalence of children and young people with life-limiting conditions in the United Kingdom. 2020. Available: https://www.togetherforshortlives.org.uk/resource/make-every-child-count/ [Accessed 03 Feb 2023].
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