A quantitative study of attitudes toward the research participation of adults with intellectual disability: Do stakeholders agree?
Katherine E McDonald, Nicole E Conroy, Robert S Olick
PMID 29292211WHAT IT FOUND
Adults with intellectual disability expressed stronger belief that they want to participate in research and can make their own decisions than IRB members and family did.
IRB members showed lower support for direct participation than researchers or service providers.
Key findings
01Adults with intellectual disability more strongly agreed that adults with an intellectual disability want to be in research studies than all other groups; researchers expressed stronger agreement with this item than IRB members.
02Adults with intellectual disability more strongly agreed that adults with an intellectual disability can make up their own mind than family members and friends and IRB members.
03Adults with intellectual disability and IRB members were also less likely to agree that it is very important that adults with an intellectual disability take part in research studies than were researchers.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The study used a convenience sample, so the results may not be representative of the broader population. Participants who could not communicate their opinions were excluded, potentially biasing the sample toward those with higher communication skills. Attitudes were measured via self-report and do not necessarily predict actual behavior. The study did not include the general public or researchers working with other populations. Psychometric properties of the specific items used were not validated.
Declared interests
The study was funded by the National Institutes of Health (NIH). The authors declared no conflicts of interest.
The easy way to misread this
Do not interpret the lower agreement among adults with intellectual disability on the importance of research as a lack of desire to participate. The data shows they expressed the strongest belief that adults with intellectual disability want to be in research studies, suggesting their lower agreement on 'importance' may reflect different priorities or skepticism about current research practices rather than disinterest.