University College Northern Denmark, Aalborg, Denmark.
University of Northampton, Northampton, UK.
Dementia (London). 2021 Apr;20(3):1005-1024. doi: 10.1177/1471301220919887. Epub 2020 Apr 23.
This paper explores some of the ethical considerations of working collaboratively with people with dementia within research based upon the experiences, challenges and learning from three doctoral research studies. Focus is on the research relationship with participants and gatekeepers, the importance of setting and access, the power relations within the research and ways in which people with dementia can be supported to be active and have a voice in research. This sits within an ethical framework of principalist ethics and ethics of care to guide not only how research is planned ethically and with consideration of participants, but also how this can support decisions made in situ. The aim is to share, based upon these three studies, ways of managing and working through some of the ethical consideration to support researchers in their decisions in planning and conducting research with people with dementia as active collaborators.
本文探讨了在基于三项博士研究的经验、挑战和学习的研究中与痴呆症患者合作时的一些伦理考虑因素。重点是研究参与者和守门人的关系，设置和准入的重要性，研究中的权力关系以及如何支持痴呆症患者在研究中积极参与并发表意见。这是在原则伦理学和关怀伦理学的伦理框架内进行的，不仅指导了如何在伦理上计划研究并考虑参与者，还指导了如何在现场支持做出的决策。目的是基于这三项研究，分享一些管理和处理伦理考虑的方法，以支持研究人员在与痴呆症患者作为积极合作者规划和开展研究时做出决策。
