Background Perinatal 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. Objective To conduct an online survey of UK and Ireland perinatal providers to examine how PnACP is operationalised in current practice. Methods A 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. Results Questionnaires 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. Conclusions Priorities 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. The data are not publicly available as they contain information that could compromise the personal information of respondents. However some (anonymised) aspects of the data that support the findings may be available on reasonable request from the corresponding author.

中文翻译：

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围产期预先护理计划：使用标准化过程理论进行全国实施调查

背景 围产期预先护理计划 (PnACP) 是一个正式决策过程，旨在帮助家庭在认识到婴儿可能患有生命限制疾病时制定婴儿护理计划。虽然 PnACP 在政策中得到推荐，但缺乏证据支持在围产期环境中的实施和发展。目标 对英国和爱尔兰围产期服务提供者进行在线调查，以了解 PnACP 在当前实践中的实施情况。方法 开发了一份安全的在线调查问卷，以收集有关以下方面的数据：(1) 正在实施的“内容”、(2) 正在使用的“流程”、(3) 感知的影响和 (4) 未满足的支持需求。使用基本描述性统计、主题分析和标准化过程理论的概念镜头对数据进行分析。结果 调查问卷由代表英国和爱尔兰 90 个组织的 108 家孕产妇和新生儿服务机构的 108 名卫生专业人员完成。这揭示了支持 PnACP 的许多资源和良好实践示例。然而，PnACP 的概念和实施方式存在很大差异。现有的框架、途径和规划工具并未定期融入护理中，受访者发现了许多对护理质量产生负面影响的障碍。他们呼吁将姑息治疗原则更好地融入急性环境中，并加大对员工培训的投资，以在生存困难时期为家庭提供支持。结论 额外围产期服务发展的优先事项包括更多地分享最佳实践和有效策略，以应对 PnACP 的独特挑战，例如面对高度不确定性时的时间敏感的协作工作和决策。这些数据不公开，因为它们包含可能危及受访者个人信息的信息。然而，根据通讯作者的合理要求，可以提供支持研究结果的数据的某些（匿名）方面。