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

Dementia (London). 2019 Apr;18(3):1042-1059. doi: 10.1177/1471301217701274. Epub 2017 Mar 28.

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.

Keywords: dementia; ethics; inclusive research; qualitative research methods; safety.

Publication types

  • Review

MeSH terms

  • Communication
  • Dementia*
  • Ethics, Research*
  • Humans
  • Patient Safety*
  • Qualitative Research
  • Research Design*