School of Social Work, McGill University, Montreal, Quebec, Canada
School of Social Work, McGill University, Montreal, Quebec, Canada.
BMJ Open. 2024 Aug 3;14(8):e085954. doi: 10.1136/bmjopen-2024-085954.
The United Nations Convention on the Rights of Persons with Disabilities asserts that all persons with disabilities have the right to receive the support they require to participate in decisions that affect them. Yet, persons with dementia continue to be excluded from decisions on issues that matter to them. Our planned scoping review seeks to address this gap by documenting the current knowledge on supported decision-making for persons with dementia and informing the next steps for research and practice.
We will use Arksey and O'Malley's (2005) six-stage framework to guide our review of the English scientific literature (2005 onwards), searching the following databases: MEDLINE, PsycINFO, CINAHL, AgeLine and the Social Science Abstracts. Our review will focus on primary studies examining supported decision-making for persons with dementia, including the voices of those with dementia. Guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews, we will identify (1) domains of supported decision-making discussed in the empirical literature and (2) practices/factors that facilitate or inhibit supported decision-making. Consultations with persons with dementia and their care partners will provide insights into lived experiences, helping identify gaps between research literature and lived realities. The preliminary title and abstract search for eligible articles were conducted between August and October 2023 and updated in June 2024, yielding 56 eligible articles for review.
This scoping review will be conducted following the standards of the Tri-Council Policy Statement for Ethical Conduct for Research Involving Humans (1998 with 2000, 2002 and 2005 amendments). The procedures for eliciting feedback from persons with dementia and their care partners were approved by the Office of Research Ethics Board at McGill University (Reference # 23-08-048). Dissemination of review findings to persons with dementia and care partners will occur during ongoing community consultations. Visual aids and brief lay summaries will be used to facilitate input and dialogue. Dissemination to the broader practice and research communities will include workshops conducted in collaboration with study partners and presentations and publications in peer-reviewed forums.
《联合国残疾人权利公约》主张，所有残疾人都有权获得支持，以参与影响他们的决策。然而，痴呆症患者仍然被排除在与他们有关的问题的决策之外。我们计划进行的范围审查旨在通过记录有关痴呆症患者的支持性决策的现有知识，并为研究和实践提供下一步的指导，来解决这一差距。
我们将使用 Arksey 和 O'Malley（2005 年）的六阶段框架来指导我们对英语科学文献（2005 年以后）的审查，检索以下数据库：MEDLINE、PsycINFO、CINAHL、AgeLine 和社会科学摘要。我们的审查将集中在研究支持性决策的原始研究上，包括痴呆症患者的声音。根据系统评价和元分析扩展的优先报告项目的指导，我们将确定（1）实证文献中讨论的支持性决策领域，以及（2）促进或阻碍支持性决策的实践/因素。与痴呆症患者及其护理伙伴的磋商将提供生活体验的见解，有助于确定研究文献和生活现实之间的差距。初步的标题和摘要搜索合格文章在 2023 年 8 月至 10 月之间进行，并于 2024 年 6 月更新，得出 56 篇合格文章进行审查。
本范围审查将遵循《涉及人类的研究的三理事会政策声明》（1998 年，2000 年、2002 年和 2005 年修正案）的标准进行。向痴呆症患者及其护理伙伴征求反馈意见的程序已获得麦吉尔大学研究伦理委员会办公室的批准（参考号 23-08-048）。在正在进行的社区磋商中，将向痴呆症患者及其护理伙伴传播审查结果。将使用视觉辅助工具和简要的通俗摘要来促进投入和对话。向更广泛的实践和研究社区传播将包括与研究伙伴合作举办的研讨会，以及在同行评议论坛上的演讲和出版物。
