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

Abstract

BackgroundA 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.MethodA scoping review of primary research and methodological papers published between January 2008 and March 2022 was conducted. The PRISMA‐ScR checklist was followed.ResultsWe 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.ConclusionsThe 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.

Voice, disability and ‘end of life’ research: Strategies for including people with intellectual disabilities in qualitative research related to death and dying

“…Guidance should mirror the consensus statement from Frankena et al (2019) on conducting inclusive health research with people with intellectual disabilities, providing guidelines specifically for researchers. In order to consider the range of impairments and preferences that people with intellectual disabilities possess, any structured guidance must (perhaps paradoxically) consider the need for flexibility in methods (Diaz, Bickenbach, Sabariego, & Bernard, 2023). Guidelines that respond to the needs of people with intellectual disabilities must also consider those with severe or profound intellectual disabilities, so they do not unintentionally leave out those who are typically not engaged as participants in research (Kirkendall et al, 2017).…”

“…However, there is no similar guidance on sensitive topics related to death and dying. A recently published scoping review (Diaz, Bickenbach, Sabariego, & Bernard, 2023) provided an overview of qualitative data collection methods used in research involving participants with intellectual disabilities to explore death and dying. Investigating 25 articles representing 23 research studies, this review identified that structured methodological guidance is required in order to adequately design and conduct research studies on a sensitive topic that may experience more scrutiny during the ethics approval process.…”

“…Such guidance could also help ethics committees and journal editors evaluate the quality of studies, as identified by Frankena et al (2019). The review shows that qualitative methods used with people with intellectual disabilities on this topic are largely conducted offline (Diaz, Bickenbach, Sabariego, & Bernard, 2023), leaving a gap for online research.…”

“…Focusing on the European context, research priorities for palliative care for people with intellectual disabilities have been suggested in order to guide researchers (Tuffrey-Wijne et al, 2016). Evidence for strategies proposed in this brief report comes mainly from a scoping review focusing on qualitative methodological approaches (Diaz, Bickenbach, Sabariego, & Bernard, 2023) and an empirical study on choosing end of life settings conducted with co-researchers via an online video communication platform (Diaz, Bickenbach, & Angus, 2023). Since it wasn't within the scope of either of those papers to call for structured methodological guidance, save for a brief mention in the scoping review, we determined that combining the insight of these two studies would be beneficial for future research.…”