Safe and Inclusive Research Practices for Qualitative Research Involving People with Dementia: A Review of Key Issues and Strategies

Abstract

Aim Developing strategies to ensure the safe participation of people with dementia in research is critical to support their wider inclusion in research and to advance knowledge in the areas of dementia policy and practice. Objectives This literature review synthesizes and critically appraises different approaches to promote the safe participation of people with dementia in qualitative research. Methods Two databases were searched for articles that discuss the methodological or ethical aspects of qualitative research involving people with dementia. We did not focus on informed consent or ethical review processes as these have been reviewed elsewhere. Findings Key issues that impact participant safety include: language, gatekeepers, the research relationship, communication, dealing with distress, knowledge dissemination, and researcher skills. Conclusion By synthesizing different approaches to safety and highlighting areas of debate, we hope to advance discussion and to contribute to the development of inclusive research methods.

Person-Oriented Research Ethics and Dementia:The Lack of Consensus

“…Allowing participants to be active agents in the research process can reduce the power disparity between the researcher and participant. For example, the researcher can allow the participant to direct the conversation instead of adhering to an interview schedule (Novek and Wilkinson 2017). Conducting the interview in a private space may increase the participant's comfort especially if the conversation may become more sensitive.…”

“…Both of these strategies can give the impression that the interviewer has an interest in the participant as a person, rather than just a source for data (Dempsey et al 2016;Hughes and Romero 2015). Being mindful of these strategies during interviews that contain sensitive talking points may be beneficial because it is ethical for the researcher to avoid causing any excess psychological harm (Novek and Wilkinson 2017). Providing comforting human touch and maintaining empathetic discourse can also be useful in more emotionally difficult interviews (Swarbrick, Sampson, and Keady 2017).…”

“…Interviews require the participant to disclose information about the self, which may cause emotional vulnerability and turmoil that results in the participant experiencing some distress during the study (Dempsey et al 2016). Distress cues can have a subtle or sudden onset, so being attentive to the participant may aid in addressing the participant's distress (Novek and Wilkinson 2017). Being reflexive during the study and adjusting the research protocol to the participant's needs may help mitigate distress (West et al 2017).…”

Research involving older persons withdementia; ethical considerations

“…They conclude that fragility and vulnerability as challenges to ethical research need more discussion. Researchers (14) have critically assessed different approaches to promoting safe participation of persons with dementia in qualitative research in a literature review. Evidence suggests that participation can contribute to well-being and social inclusion, as further research (15) also has highlighted.…”

Equity of people with dementia in research, why does this issue remain?

“…More recently, a contemporary review of the literature has explored the concept of safe participation and inclusion of people with dementia in research (Novek & Wilkinson, ). This work emphasises the movement away from exploring ethical issues, such as gaining consent to explore safe participation of people with dementia in research.…”