Department of Oncology and Metabolism, University of Sheffield, Sheffield, UK.
Palliative Care Unit, University of Liverpool, Liverpool, UK.
Palliat Med. 2022 Sep;36(8):1186-1206. doi: 10.1177/02692163221105599. Epub 2022 Aug 1.
The circumstances and care provided at the end of a child's life have a profound impact on family members. Although assessing experiences and outcomes during this time is challenging, healthcare professionals have a responsibility to ensure high quality of care is provided.
To identify available tools which measure the quality of dying, death and end-of-life care for children and young people; describe the content, and data on validity and reliability of existing tools.
Scoping review was conducted following the Arksey and O'Malley methodological framework.
Four electronic databases (MEDLINE, EMBASE, CINAHL and PsycINFO) and grey literature were searched for studies published in English (January 2000-June 2021). A review of reference lists and citation searching was also undertaken. Tools needed to include a focus on the 'dying' phase of illness (defined as the last month of life).
From 2078 articles, a total of 18 studies, reporting on 11 tools were identified. All tools were completed by primary caregivers or healthcare professionals as 'proxy' assessments; all except one was undertaken after death. Question items about quality of life and preparation for death were found in all tools; items relating to cultural aspects of care, grief and financial costs were less common. Only 6/11 had undergone psychometric testing within a paediatric palliative care setting.
Future research should include ways to adapt, refine and improve existing tools. Assessing their wider application in different clinical and cultural settings and conducting further psychometric assessment represent areas of focus.
儿童生命末期的情况和所提供的护理对其家庭成员有深远的影响。尽管评估这段时间的体验和结果具有挑战性，但医疗保健专业人员有责任确保提供高质量的护理。
确定可用于衡量儿童和青少年临终、死亡和终末期护理质量的工具；描述现有工具的内容、有效性和可靠性数据。
按照阿特赛克和奥马利的方法学框架进行范围综述。
在 MEDLINE、EMBASE、CINAHL 和 PsycINFO 这四个电子数据库以及灰色文献中搜索了 2000 年 1 月至 2021 年 6 月期间以英文发表的研究。还对参考文献列表和引文搜索进行了审查。所需的工具需要重点关注疾病的“临终”阶段（定义为生命的最后一个月）。
从 2078 篇文章中，共确定了 18 项研究，报告了 11 种工具。所有工具均由主要照顾者或医疗保健专业人员作为“代理”评估完成；除一项外，其余均在死亡后进行。所有工具都有关于生活质量和死亡准备的问题项目；与护理的文化方面、悲伤和经济成本相关的项目则较少。仅有 11 项中的 6 项在儿科姑息治疗环境中进行了心理计量学测试。
未来的研究应包括如何改编、改进和完善现有工具。评估它们在不同临床和文化环境中的更广泛应用，并进行进一步的心理计量评估，是关注的重点领域。
