A survey study of the attitudes and experiences of adults with intellectual disability regarding participation in research.
Adults with ID welcome research—first win their trust.
01Research in Context
What this study did
Adams et al. (2021) asked adults with intellectual disability how they feel about joining research.
They used a survey so people could answer in their own words.
The goal was to learn what helps these adults say yes to a study.
What they found
Most adults with ID like the idea of research.
They will join if they trust the researcher first.
Positive attitudes were strong when staff or family also trusted the project.
How this fits with other research
Haas et al. (2016) saw the same pattern in adults with autism five years earlier.
Both studies show the same key step: build trust before you ask people to sign up.
Parchomiuk et al. (2025) found that outside barriers, like rigid rules, still block self-determination.
Together the papers say adults with ID want to take part, but systems must remove roadblocks and earn trust first.
Why it matters
You can boost recruitment by showing you are safe and respectful.
Start with a friendly visit, use plain language, and let support staff stay in the room.
When adults with ID feel trusted, they say yes more often and stay in the study longer.
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02At a glance
03Original abstract
BACKGROUND: Historically, people with intellectual disability have been exploited in and excluded from scientific research. To facilitate greater representation of adults with intellectual disability as research respondents, we sought to understand their interest in research participation and factors affecting their willingness to volunteer to participate, such as the core value of trust. METHODS: Our survey measured attitudes of adults with intellectual disability towards research in general and research specifically involving adults with intellectual disability as respondents, as well as their prior research experiences, trust of researchers and interest in future research participation. RESULTS: Participants reported positive attitudes towards research and strong interest in future participation opportunities, and trust of researchers was positively correlated to both. The belief that 'research about adults with intellectual disability is very important' also predicted participants' interest in future research participation. CONCLUSIONS: Our findings indicate that adults with intellectual disability support the direct involvement of adults with intellectual disability in research as respondents. Trustworthy rapport with researchers and positive views about research foster greater inclusion of this population.
Journal of intellectual disability research : JIDR, 2021 · doi:10.1111/inm.12079