Dombrecht Laure, Chambaere Kenneth, Beernaert Kim, Roets Ellen, De Vilder De Keyser Mona, De Smet Gaëlle, Roelens Kristien, Cools Filip
End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, 1090 Brussels, Belgium.
Department of Obstetrics, Women's Clinic, University Hospital Ghent, 9000 Ghent, Belgium.
Children (Basel). 2023 Mar 1;10(3):482. doi: 10.3390/children10030482.
When a severe diagnosis is made before or after birth, perinatal palliative care (PPC) can be provided to support the infant, parents and involved healthcare providers. An integrative and systematic overview of effectiveness and working components of existing PPC programs was needed. An integrative search was conducted in MEDLINE, Embase, CENTRAL, CINAHL, PsycInfo and Web of Science. Study designs examining the effect of PPC compared to regular care, and (empirical) articles describing the components of care included in existing PPC initiatives were included. Three independent authors reviewed titles, abstracts and full texts against eligibility criteria. PRISMA guidelines were followed; 21.893 records were identified; 69 publications met inclusion criteria. Twelve publications (17.4%) discussed the effect of a PPC program. Other publications concerned the description of PPC programs, most often by means of a program description (22/69; 31.9%), guidelines (14/769; 20.3%) or case study (10/69; 14.5%). Outcome measures envisioned four main target categories: care coordination, parents and family members, care for the fetus/neonate and healthcare providers. No trials exist to date. Analysis of working components revealed components related to changes directed to the policy of the hospital wards and components involving actual care being provided within the PPC program, directed to the fetus or infant, the family, involved healthcare providers or external actors. PPC is a growing research field where evidence consists mainly of descriptive studies and guidelines. The extensive list of possible PPC components can serve as a checklist for developing future initiatives worldwide. PPC includes several important actors: the fetus/infant and their family and included healthcare providers on both maternity and neonatal wards. This leads to a large variety of possible care components. However, while some studies show proof of concept, an evidence base to determine which components are actually effective is lacking.
在出生前或出生后做出严重诊断时，可提供围产期姑息治疗（PPC）以支持婴儿、父母及相关医疗服务提供者。需要对现有PPC项目的有效性和工作组成部分进行综合系统的概述。我们在MEDLINE、Embase、CENTRAL、CINAHL、PsycInfo和科学网进行了综合检索。纳入了比较PPC与常规护理效果的研究设计，以及描述现有PPC项目中护理组成部分的（实证）文章。三位独立作者根据纳入标准对标题、摘要和全文进行了审查。遵循PRISMA指南；共识别出21,893条记录；69篇出版物符合纳入标准。12篇出版物（17.4%）讨论了PPC项目的效果。其他出版物涉及PPC项目的描述，最常见的是通过项目描述（22/69；31.9%）、指南（14/69；20.3%）或案例研究（10/69；14.5%）。结果指标设想了四个主要目标类别：护理协调、父母和家庭成员、胎儿/新生儿护理以及医疗服务提供者。迄今为止尚无试验。对工作组成部分的分析揭示了与医院病房政策变化相关的组成部分，以及PPC项目中针对胎儿或婴儿、家庭、相关医疗服务提供者或外部行为者实际提供护理的组成部分。PPC是一个不断发展的研究领域，但证据主要由描述性研究和指南组成。大量可能的PPC组成部分清单可作为全球未来项目开发的核对清单。PPC涉及几个重要行为者：胎儿/婴儿及其家庭以及产科和新生儿病房的相关医疗服务提供者。这导致了各种各样可能的护理组成部分。然而，虽然一些研究显示了概念验证，但缺乏确定哪些组成部分实际有效的证据基础。
