Over 80% of older adults in long-term care (LTC) institutions live with cognitive impairment/dementia, yet the perspective of people with advanced dementia has still not been sufficiently explored in research. This group of people is systematically excluded from a lot of research, often because of ethical and methodical issues and legal barriers. With this in mind, a recently-published article in the open access journal “Social Sciences & Humanities Open” looked closely at the ethical considerations and challenges which arise in qualitative research with people living with advanced dementia. The article, “‘Take me to the back, or they'll think I am not normal’ - Ethical reflections on narrative research with people with dementia living in long-term care institutions” was written by researchers Verena C. Tatzer and Elisabeth Reitinger. In their paper, they present ethical issues in research using a design inspired by ethnography with the aim to encourage future research in this field.
Methods applied were observations, interviews and informal talks with people diagnosed with moderate and severe dementia. Two different long-term care institutions were researched: a specialised dementia-care unit and an institution based on a community-oriented household model. Participants were older adults with dementia, and data were collected over a period of two years. Staff and next of kin were included in data collection. A thematic and narrative analysis was performed. Challenges linked to ethical and methodological issues were experienced throughout the whole research process, which included getting approval from a local ethical committee, gaining access to the field, dealing with process consent and complex qualitative analysis, representing the participants’ stories in a respectful way, enabling reciprocity, as well as dealing with difficult situations in long-term care and questions of the vulnerability of both the participants and the researcher.
The authors concluded that it is possible to include vulnerable adults living with advanced dementia in qualitative research and that this should be done more extensively in order to make the experience of a group that is growing in numbers visible. Strategies of reflexivity have to be carefully planned and organised in advance, they note, because methodological and ethical aspects are strongly intertwined. In contemporary qualitative narrative research, they recommend to not only present the participants’ stories, but also the researcher's own story, that exerts influence on the research process. Their paper also highlights that approaches derived from care- and process-ethics, as well as appreciative inquiry, can provide valuable support throughout the research process. Read the full paper: https://doi.org/10.1016/j.ssaho.2023.100491
