This 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. (shrink)

Nurse researchers engaged in qualitative interviews with patients and spouses in healthcare may often experience being in unforeseen ethical dilemmas. Researchers are guided by the bioethical principles of justice, beneficence, non-maleficence, respect for human rights and respect for autonomy through the entire research process. However, these principles are not sufficient to prepare researchers for unanticipated ethical dilemmas related to qualitative research interviews. We describe and discuss ethically challenging and difficult moments embedded in two cases from our own phenomenological interview studies. (...) We argue that qualitative interviews involve navigation between being guided by bioethics as a researcher, being a therapist/nurse and being a fellow human being or even a friend. The researchers’ premises to react to unexpected situations and act in a sound ethical manner must be enhanced, and there is a need for an increased focus on the researchers’ ethical preparation and to continually address and discuss cases from their own interviews. (shrink)