Balkin Emma Jelstrup, Kollerup Mette Geil, Kymre Ingjerd Gåre, Martinsen Bente, Grønkjær Mette
Department of Clinical Medicine, Aalborg University, Sdr Skovvej 15, 9000 Aalborg, Denmark.
School of Nursing, University College of Northern Denmark, Aalborg, Denmark; Clinical Nursing Research Unit, Aalborg University Hospital, Aalborg, Denmark.
J Aging Stud. 2023 Mar;64:101110. doi: 10.1016/j.jaging.2023.101110. Epub 2023 Feb 7.
Based on ethnographic fieldwork in a nursing home in northern Denmark, this article addresses challenges experienced in putting formal ethics requirements into practice. We consider how to unite procedural ethics with actual, lived ethics, when researching with vulnerable participants who live with a cognitively impairing condition. The article centers on the story of one resident, who wanted to share her experiences with what she had perceived as inadequate care, but who baulked once the wordy consent form was produced. The resident panicked that her words could now be used against her, that talking with the researcher would (further) compromise her care. She was caught in a bind, on the one hand she had a deep desire to tell her story, on the other the piece of paper in her hand threatened to trigger her anxiety and depression. In this article we therefore approach the consent form as an agent. By mapping out these unintended consequences of the consent form, we wish to draw attention to the complexities of ethical research conduct in practice, ultimately arguing that the concept of appropriate informed consent should be broadened so that it is sensitive to the lifeworld of participants.
基于在丹麦北部一家养老院的人种志实地调查，本文探讨了将正式的伦理要求付诸实践时所面临的挑战。当我们与患有认知障碍疾病的弱势参与者进行研究时，我们思考如何将程序伦理与实际生活中的伦理结合起来。本文围绕一位居民的故事展开，她想分享自己对所感受到的护理不足的经历，但当冗长的同意书出现时却犹豫了。这位居民担心自己的话现在可能会被用来对付她，与研究人员交谈会（进一步）危及她的护理。她陷入了两难境地，一方面她非常想讲述自己的故事，另一方面手中的那张纸却有可能引发她的焦虑和抑郁。因此，在本文中，我们将同意书视为一个影响因素。通过梳理同意书这些意想不到的后果，我们希望引起人们对实践中伦理研究行为复杂性的关注，最终主张应拓宽适当知情同意的概念，使其对参与者的生活世界保持敏感。
