Martin House Research Centre, Department of Health Sciences, University of York, York, UK.
School of Social Science, Bangor University, Wales, UK.
Palliat Med. 2023 Feb;37(2):178-202. doi: 10.1177/02692163221144084. Epub 2022 Dec 22.
An estimated 21 million children worldwide would benefit from palliative care input and over 7 million die each year. For parents of these children this is an intensely emotional and painful time through which they will need support. There is a lack of synthesised research about how parents experience the care delivered to their child at the end of life.
To systematically identify and synthesise qualitative research on parents' experiences of end-of-life care of their child.
A qualitative evidence synthesis was conducted. The review protocol was registered in PROSPERO (CRD42021242946).
MEDLINE, EMBASE, CINAHL, PsycINFO and Web of Science databases were searched for qualitative studies published post-2000 to April 2020. Studies were appraised for methodological quality and data richness. Confidence in findings was assessed by GRADE-CERQual.
About 95 studies met the eligibility criteria. A purposive sample of 25 studies was taken, of good-quality papers with rich data describing the experience of over 470 parents. There were two overarching themes: parents of children receiving end-of-life care experienced a profound need to fulfil the parental role; and care of the parent. Subthemes included establishing their role, maintaining identity, ultimate responsibility, reconstructing the parental role, and continuing parenting after death.
Services delivering end-of-life care for children need to recognise the importance for parents of being able to fulfil their parental role and consider how they enable this. What the parental role consists of, and how it's expressed, differs for individuals. Guidance should acknowledge the need to enable parents to parent at their child's end of life.
全球估计有 2100 万儿童将受益于姑息治疗投入，每年有超过 700 万人死亡。对于这些孩子的父母来说，这是一个极其情绪化和痛苦的时期，他们需要支持。目前缺乏综合研究来了解父母在孩子生命末期对其护理的体验。
系统地识别和综合定性研究，以了解父母对临终儿童护理的体验。
进行了定性证据综合。审查方案已在 PROSPERO（CRD42021242946）中注册。
搜索了 MEDLINE、EMBASE、CINAHL、PsycINFO 和 Web of Science 数据库，以获取 2000 年后至 2020 年 4 月发表的定性研究。研究方法的质量和数据丰富程度进行了评估。通过 GRADE-CERQual 评估研究结果的可信度。
约有 95 项研究符合入选标准。选择了 25 项具有良好质量且数据丰富的研究，这些研究描述了 470 多名父母的体验。有两个总体主题：接受临终关怀的儿童的父母经历了履行父母角色的深刻需求；以及对父母的关怀。子主题包括确立角色、保持身份、最终责任、重建父母角色以及在孩子死后继续育儿。
为儿童提供临终关怀服务的机构需要认识到父母能够履行其父母角色的重要性，并考虑如何使这一点成为可能。父母角色的组成部分以及如何表达，因人而异。指导意见应承认有必要使父母能够在孩子生命的尽头育儿。
