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.

译文

:本文基于三项博士研究的经验,挑战和学习,探讨了在研究中与痴呆症患者合作的一些伦理学考虑。重点是与参与者和看门人之间的研究关系,设置和访问的重要性,研究中的权力关系以及可以支持痴呆症患者活跃并在研究中发表意见的方式。这位于原则主义伦理和关怀伦理的伦理框架之内,不仅可以指导研究如何在伦理上进行计划并在考虑参与者的情况下进行指导,而且还可以指导研究如何支持就地决策。目的是在这三项研究的基础上,共享管理和解决某些道德问题的方法,以支持研究人员在与痴呆症患者作为积极合作者的计划和进行研究的决策中进行决策。

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