Nursing Ethics 18 (5):651-661 (2011)
AbstractThis article is based on a qualitative longitudinal study that followed the subjective experiences of both people living with dementia and their family members during the early stages of the illness. The purpose of this article is to describe and reflect on the ethical and methodological issues that occurred during data collection. The article focuses on the situation of the person with dementia and the family member and the role of the researcher when conducting the research interviews. Based on the results of this study, conducting research interviews with people with dementia and their family members poses several ethical and methodological challenges that must be addressed. In doing so, ethically sound dementia-specific research methods will be actively developed enhancing our understanding of living with dementia and providing new insights into the care of people with dementia and their family members
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Citations of this work
Older people’s experiences of their free will in nursing homes.Leena Tuominen, Helena Leino-Kilpi & Riitta Suhonen - 2016 - Nursing Ethics 23 (1):22-35.
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References found in this work
Declaration of Helsinki. Ethical Principles for Medical Research Involving Human Subjects.World Medical Association - 2009 - Jahrbuch für Wissenschaft Und Ethik 14 (1):233-238.
Consent and Assent to Participate in Research from People with Dementia.Susan Slaughter, Dixie Cole, Eileen Jennings & Marlene A. Reimer - 2007 - Nursing Ethics 14 (1):27-40.
Ethical and Methodological Issues in Interviewing Persons With Dementia.Ingrid Hellström, Mike Nolan, Lennart Nordenfelt & Ulla Lundh - 2007 - Nursing Ethics 14 (5):608-619.
Participation in dementia research: rates and correlates of capacity to give informed consent.J. Warner, R. McCarney, M. Griffin, K. Hill & P. Fisher - 2008 - Journal of Medical Ethics 34 (3):167-170.
Ethical Considerations in a Grounded Theory Study on the Dynamics of Hope in HIV-Positive Adults and Their Significant Others.J. Kylma, K. Vehvilainen-Julkunen & J. Lahdevirta - 1999 - Nursing Ethics 6 (3):224-239.