Novek Sheila, Wilkinson Heather
Department of Community Health Sciences, University of Manitoba, Winnipeg, Canada.
Edinburgh Centre for Research on the Experiences of Dementia (E-CRED), University of Edinburgh, Edinburgh, UK.
Dementia (London). 2019 Apr;18(3):1042-1059. doi: 10.1177/1471301217701274. Epub 2017 Mar 28.
Developing strategies to ensure the safe participation of people with dementia in research is critical to support their wider inclusion in research and to advance knowledge in the areas of dementia policy and practice.
This literature review synthesizes and critically appraises different approaches to promote the safe participation of people with dementia in qualitative research.
Two databases were searched for articles that discuss the methodological or ethical aspects of qualitative research involving people with dementia. We did not focus on informed consent or ethical review processes as these have been reviewed elsewhere.
Key issues that impact participant safety include: language, gatekeepers, the research relationship, communication, dealing with distress, knowledge dissemination, and researcher skills.
By synthesizing different approaches to safety and highlighting areas of debate, we hope to advance discussion and to contribute to the development of inclusive research methods.
制定策略以确保痴呆症患者安全参与研究对于支持他们更广泛地融入研究以及推进痴呆症政策和实践领域的知识至关重要。
本文献综述综合并批判性地评估了促进痴呆症患者安全参与定性研究的不同方法。
检索了两个数据库，以查找讨论涉及痴呆症患者的定性研究的方法学或伦理方面的文章。我们没有关注知情同意或伦理审查过程，因为这些已在其他地方进行了审查。
影响参与者安全的关键问题包括：语言、把关人、研究关系、沟通、应对困扰、知识传播和研究人员技能。
通过综合不同的安全方法并突出辩论领域，我们希望推动讨论并为包容性研究方法的发展做出贡献。
