Ethics and the impossibility of the consent form: Ethnography in a Danish nursing home

Ethics and the impossibility of the consent form: Ethnography in a Danish nursing home
Emma Jelstrup Balkin, Mette Geil Kollerup, Ingjerd Gåre Kymre, Bente Martinsen, Mette Grønkjær
Journal of Aging Studies, March 2023
Open Access
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.

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