“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

Abstract

BackgroundOver 80% of older adults in long-term care institutions live with cognitive impairment/dementia. They represent a particularly vulnerable group, yet the perspective of people with advanced dementia has still not been sufficiently explored. These people are often excluded from research, also because of ethical and methodical issues and legal barriers. DesignIn this paper we discuss ethical considerations und challenges which arise in qualitative research with people living with advanced dementia. We 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 specialized dementia-care unit and an institution based on a community- oriented household-model. Participants were older adults with dementia, and data were collected within 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. These included getting approval from a local ethical committee, gaining access to the field, dealing with process consent and complex qualitative analysis, representing the participant's 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. ConclusionIt is possible to include vulnerable adults living with advanced dementia in qualitative research. 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 organized in advance because methodological and ethical aspects are strongly intertwined. In contemporary qualitative narrative research, it is recommended to not only present the participant's stories, but also the researcher's own story that exerts influence on the research process. Approaches derived from care- and process ethics as well as appreciative inquiry can provide valuable support throughout the research process.