Qualitative methodological approaches involving participants with intellectual disabilities: Scoping review of literature exploring death and dying

Abstract

Background: A paucity of qualitative research on sensitive topics that focuses on participants with intellectual disabilities leaves their views unexplored. This scoping review mainly aimed to provide an overview of qualitative data collection methods used in research involving participants with intellectual disabilities to explore death and dying.

Method: A scoping review of primary research and methodological papers published between January 2008 and March 2022 was conducted. The PRISMA-ScR checklist was followed.

Results: We identified 25 articles utilising four data collection methods: interviews, focus groups, the Nominal Group Technique, and participant observation. Data collection trends were identified, including accommodations for participants with intellectual disabilities, visual media used as a facilitator, and reporting of distress protocols. Most participants had mild to moderate intellectual disabilities.

Conclusions: The included studies demonstrate a flexible approach that relies on the use of multiple methods. Future research must adequately report study characteristics to ensure transparency and reliability.

Keywords: death; end-of-life; intellectual disability; methodology; qualitative methods; research methods.