Brooks Joanna, Hall Alex, Higgerson James, Long Hannah, Urwin Sean, Rowland Christine
Manchester Centre for Health Psychology, Division of Psychology and Mental Health, School of Health Sciences, University of Manchester, Manchester, UK
Division of Nursing, Midwifery & Social Work, School of Health Sciences, University of Manchester, Manchester, UK.
BMJ Open. 2024 Dec 3;14(12):e085922. doi: 10.1136/bmjopen-2024-085922.
Informal caregivers are essential in supporting end-of-life patients at home but are often ill-prepared for the carer role. There is growing interest in the development of tools to assess caregiver support needs and a recognised need for a greater focus on addressing inequities in end-of-life care. We plan to undertake a scoping review of available literature to (1) identify and describe tools developed to assess the support needs of informal caregivers in end-of-life care; (2) report on any inequities and under-represented groups in tool development and use.
The review will conform to best practice methodological guidance (Joanna Briggs Institute) for scoping reviews. The search strategy will target published and unpublished studies using any methodology, which reports on developing or using tools or measures to assess informal carer support needs in end-of-life/palliative care settings. The following databases will be searched: MEDLINE, CINAHL, PsycINFO, Web of Science, ASSIA and Proquest. Both title/abstract screening and full-text assessment will be undertaken to ensure eligibility. Searches will be conducted between May and December 2024. We will extract data relating to (1) tools/measures identified, and outcome measures used to assess these; (2) participant characteristics. Extracted data will be tabulated with accompanying narrative description to address the review objectives. Data will be extracted and write-up will be completed between January and May 2025.
This scoping review will provide an overview of the tools developed to identify and assess informal caregiver support needs in palliative and end-of-life care. The identification of any inequities will increase awareness of potentially underserved groups and contexts within the current literature, highlighting how future research and resource can be more equitably focused and implemented in a way that does not further embed disparity. Findings will be made publicly available through the Open Science Framework and disseminated through a peer-reviewed publication. As a scoping review of available literature, this work does not require ethical approval.
非正式照护者对于在家中支持临终患者至关重要，但他们往往对照护者角色准备不足。开发评估照护者支持需求的工具的兴趣日益浓厚，并且人们认识到需要更加关注解决临终关怀中的不平等问题。我们计划对现有文献进行范围综述，以（1）识别和描述为评估非正式照护者在临终关怀中的支持需求而开发的工具；（2）报告工具开发和使用中存在的任何不平等现象以及代表性不足的群体。
该综述将遵循范围综述的最佳实践方法学指南（乔安娜·布里格斯研究所）。检索策略将针对使用任何方法的已发表和未发表研究，这些研究报告了开发或使用工具或措施来评估临终/姑息治疗环境中非正式照护者的支持需求。将检索以下数据库：MEDLINE、CINAHL、PsycINFO、科学引文索引、ASSIA和ProQuest。将进行标题/摘要筛选和全文评估以确保纳入资格。检索将在2024年5月至12月之间进行。我们将提取与（1）识别出的工具/措施以及用于评估这些工具的结果指标；（2）参与者特征相关的数据。提取的数据将制成表格并附带叙述性描述，以实现综述目标。数据将在2025年1月至5月之间提取并完成撰写。
本范围综述将概述为识别和评估姑息治疗和临终关怀中非正式照护者的支持需求而开发的工具。识别出任何不平等现象将提高对当前文献中潜在服务不足群体和背景的认识，突出未来研究和资源如何能够更公平地聚焦并以不会进一步加剧差距的方式实施。研究结果将通过开放科学框架公开提供，并通过同行评审出版物进行传播。作为对现有文献的范围综述，这项工作无需伦理批准。
