People with intellectual disability and human science research: A systematic review of phenomenological studies using interviews for data collection.
People with mild–moderate ID can share rich self-views in long interviews, but only if we slow down and hand the findings back in plain language.
01Research in Context
What this study did
Corby et al. (2015) looked at 28 studies that used long, open interviews to learn how people with mild or moderate intellectual disability see their own lives.
The team pulled out every step the researchers used: how they asked questions, how they checked the answers, and how they shared results with the people who took part.
What they found
The review shows that people with ID can talk in depth about feelings, choices, and daily life when the interviewer slows down and uses plain words.
Most studies, however, still hide the final report behind paywalls or jargon, so the very people who shared their stories never see what was learned.
How this fits with other research
Carter et al. (2025) later covered the same ground while reviewing dementia studies in ID; they list the 2015 paper inside their own scope, proving the interview tips still hold ten years on.
Naaldenberg et al. (2013) and Laposa et al. (2017) also map weak methods in ID health research, backing the same warning: without better tools, we keep recycling shaky data.
Whittle et al. (2018) and Bergmann et al. (2019) shift the spotlight to love and sex, but they still use the same open-interview style; their work shows the method travels well across topics.
Why it matters
If you run preference assessments or social-skills groups, you can borrow the pacing and plain-language checks these phenomenology studies use. Pause often, re-word once, and let the client lead. After your project, give results back in a one-page easy-read summary or a short video. When people see their own words matter, they stay engaged in therapy and in life.
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02At a glance
03Original abstract
This paper presents the findings from a systematic review which investigated the use of phenomenological research interviews in studies involving people with intellectual disability. A search of four electronic databases and the subsequent application of inclusion criteria resulted in 28 relevant publications. Selected articles were reviewed and key data extracted using CASP guidelines, with findings presented by examining the influencing philosophy or theory, the method of recruitment and data collection, the relationship between researcher and participants, the rigour of data analysis and finally a statement of findings. The results show people with mild and moderate intellectual disability, included as participants in phenomenological research investigating a range of issues that are important in their lives. A critical discussion focuses on the main characteristics of phenomenology and points to implications for further research. Creating awareness of research among people with intellectual disability is important, and finding the best way to ensure findings are disseminated in accessible formats is recommended. Researchers are also challenged to consider Heideggerian hermeneutic phenomenology as a method with the potential to fully explore the experiences of people with intellectual disability.
Research in developmental disabilities, 2015 · doi:10.1016/j.ridd.2015.09.001