TY - JOUR
T1 - Ethics and the impossibility of the consent form
T2 - Ethnography in a Danish nursing home
AU - Balkin, Emma Jelstrup
AU - Kollerup, Mette Geil
AU - Kymre, Ingjerd Gåre
AU - Martinsen, Bente
AU - Grønkjær, Mette
N1 - Publisher Copyright:
© 2023 The Authors
PY - 2023/3
Y1 - 2023/3
N2 - 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.
AB - 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.
KW - Cognitive impairment
KW - Documents as active agents
KW - Ethnography
KW - Informed consent
KW - Nursing homes
KW - Older adults
UR - http://www.scopus.com/inward/record.url?scp=85149065339&partnerID=8YFLogxK
U2 - 10.1016/j.jaging.2023.101110
DO - 10.1016/j.jaging.2023.101110
M3 - Journal article
C2 - 36868622
AN - SCOPUS:85149065339
SN - 0890-4065
VL - 64
JO - Journal of Aging Studies
JF - Journal of Aging Studies
M1 - 101110
ER -