Involving individuals with dementia as co-researchers in analysis of findings from a qualitative study

Dementia (London). 2019 Feb;18(2):701-712. doi: 10.1177/1471301217690904. Epub 2017 Jan 29.

Abstract

Patient and public involvement is widely accepted as good practice in dementia research contributing substantial benefits to research quality. Reports detailing involvement of individuals with dementia as co-researchers, more specifically in analysis of findings are lacking. This paper reports an exercise involving individuals with dementia as co-researchers in a qualitative analysis. Data was from anonymised extracts of interviews with people with dementia who had participated in a multistage study on risk communication in dementia care, relating to concepts and communication of risk. Co-researchers were involved in deriving meaning from the data, identifying and connecting themes. The analysis process is described, reflections on the exercise provided and impact discussed. The session improved overall research quality by enhancing validity of the findings through application of multiple perspectives while also generating sub-themes for exploration in subsequent interviews. Development of guidance for involving individuals with dementia in analysis of research findings is needed.

Keywords: co-research; dementia; patient and public involvement; user involvement.

MeSH terms

  • Aged
  • Biomedical Research* / methods
  • Data Analysis*
  • Dementia / psychology*
  • Female
  • Humans
  • Male
  • Middle Aged
  • Patient Participation*
  • Qualitative Research
  • Researcher-Subject Relations
  • Risk Factors