West Emily, Stuckelberger Astrid, Pautex Sophie, Staaks Janneke, Gysels Marjolein
Institute for Research in Extramural Medicine, Amsterdam 1081 BT, The Netherlands.
Universite de Geneve-Institut de sante globale, Geneve, GE, Switzerland.
Age Ageing. 2017 Jul 1;46(4):678-687. doi: 10.1093/ageing/afw250.
the worldwide number of dementia cases is increasing, and this is a trend that is expected to continue as a growing proportion of the population ages. However, conducting research with persons suffering from dementia can be fraught due to fears surrounding research risks in vulnerable populations. This can make seeking approval for studies difficult. As research directly involving persons with dementia is key for the development of evidence-based best practice, the development of a coherent ethical strategy to perform such research feasibly and effectively is of paramount importance.
this paper aims to review and synthesise ethical challenges in performing research with persons who have dementia.
in undertaking a systematic review of the current research literature, we will identify the central issues and arguments characterising research that concerns the ethical dimensions of research participation in the dementia population. Data were analysed using both inductive and deductive content analysis. Ethical considerations in research involving persons with dementia primarily concern the representation of the interests of the person with dementia and protection of their vulnerabilities and rights.
a total of 2,894 results were returned from initial searches, following deduplication. In total, 2,458 were excluded at title review, and following abstract review 158 papers remained; 29 papers were included for analysis after full paper review and data extraction. Papers ranged between 1995 and 2013.
this review has highlighted a lack of consensus in current research and guidelines addressing these concerns; a clear stance on ethical governance of studies is important for future research and best evidence-based practice in dementia.
全球痴呆症病例数量正在增加，随着老年人口比例的不断上升，这一趋势预计还将持续。然而，对痴呆症患者进行研究可能充满困难，因为人们担心弱势群体的研究风险。这可能导致研究审批困难。由于直接涉及痴呆症患者的研究是循证最佳实践发展的关键，因此制定一项连贯的伦理策略以切实有效地开展此类研究至关重要。
本文旨在回顾和综合在对痴呆症患者进行研究时面临的伦理挑战。
在对当前研究文献进行系统综述时，我们将确定与痴呆症患者研究参与伦理维度相关的核心问题和论点。使用归纳和演绎内容分析法对数据进行分析。涉及痴呆症患者的研究中的伦理考量主要涉及痴呆症患者利益的体现以及对其脆弱性和权利的保护。
初步检索共返回2894条结果，去重后，标题审查阶段共排除2458条，摘要审查后剩余158篇论文；全文审查和数据提取后纳入29篇论文进行分析。论文发表时间跨度为1995年至2013年。
本综述强调了当前研究和指南在解决这些问题上缺乏共识；明确研究伦理治理立场对于未来痴呆症研究和循证最佳实践至关重要。
