Hellström Ingrid, Nolan Mike, Nordenfelt Lennart, Lundh Ulla
Ersta Sköndal University College, Stockholm, Sweden.
Nurs Ethics. 2007 Sep;14(5):608-19. doi: 10.1177/0969733007080206.
People with dementia have previously not been active participants in research, with ethical difficulties often being cited as the reason for this. A wider inclusion of people with dementia in research raises several ethical and methodological challenges. This article adds to the emerging debate by reflecting on the ethical and methodological issues raised during an interview study involving people with dementia and their spouses. The study sought to explore the impact of living with dementia. We argue that there is support for the inclusion of people with dementia in research and that the benefits of participation usually far outweigh the risks, particularly when a ;safe context' has been created. The role of gatekeepers as potentially responsible for excluding people with dementia needs further consideration, with particular reference to the appropriateness of viewing consent as a primarily cognitive, universalistic and exclusionary event as opposed to a more particularistic, inclusive and context relevant process.
痴呆症患者以前并非研究的积极参与者,伦理困境常被引为其原因。让更多痴呆症患者参与研究引发了若干伦理和方法学挑战。本文通过思考在一项涉及痴呆症患者及其配偶的访谈研究中出现的伦理和方法学问题,加入了这场正在兴起的辩论。该研究旨在探讨与痴呆症共同生活的影响。我们认为,支持将痴呆症患者纳入研究,而且参与的益处通常远大于风险,尤其是在营造了“安全环境”的情况下。把关人在可能导致痴呆症患者被排除在外方面所起的作用需要进一步考量,尤其要考虑将同意视为主要是认知性、普遍主义和排他性事件,而非更具特殊主义、包容性和与具体情境相关的过程是否恰当。