Facilitating the inclusion of adults with intellectual disability as direct respondents in research: Strategies for fostering trust, respect, accessibility and engagement.
Katherine E McDonald, Colleen Gibbons, Nicole Conroy and 1 others
PMID 34559449WHAT IT FOUND
Researchers built a survey with adults with intellectual disability on the design team.
Using plain language, visuals, and flexible administration modes, they collected 100 responses in most groups. Adults with intellectual disability reported the survey was easy to understand and complete.
Key findings
01The study used an iterative process with a 15-member Expert Panel, including seven adults with intellectual disability, to design survey materials and protocols.
02Strategies to foster inclusion included using people-first language, presuming competency, providing multiple administration modes (online, print, interview), and offering individualized accommodations like transportation support.
03The team successfully recruited 100 participants in most stakeholder groups within 2-3 months, and cognitive interviews confirmed the survey was easy to understand with minimal missing data.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs
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What it does not show
The study did not include adults with the most significant communication support needs, so the strategies may not be sufficient for that subgroup. A small number of respondents were removed from analyses due to concerns about their ability to understand survey items. The study reports on the development and initial deployment process rather than testing the survey's long-term psychometric properties or generalizability beyond the specific context.
Declared interests
The authors received IRB approval from Syracuse University. Members of the Expert Panel were paid US$50 per meeting and provided university-branded gifts. Cognitive interview participants received US$40 and travel reimbursement.
The easy way to misread this
Do not assume this survey is validated for all adults with intellectual disability. The study explicitly excluded those with the most significant communication support needs, and some participants were removed from analysis because they could not adequately understand the items.