Is It Worth It? Benefits in Research With Adults With Intellectual Disability.
Adults with ID see more value in research than anyone else expects—so ask them directly.
01Research in Context
What this study did
Libero et al. (2016) asked four groups to rate the benefits of research for adults with intellectual disability. The groups were the adults themselves, their families, paid caregivers, and ethics board members.
They used a survey. Each person marked how much they thought the adult would gain from joining a research project.
What they found
Adults with ID saw the most benefit. Families, staff, and ethics boards gave lower scores.
The gap was large. The adults valued personal growth, new friends, and having a voice. Outsiders mostly thought about risk.
How this fits with other research
Najdowski et al. (2003) found the same split in life-satisfaction ratings. Adults with ID and staff agreed, but higher-functioning adults rated their lives better than staff did. The pattern shows proxy reporters often underrate positive feelings.
Chou et al. (2007) later showed mild-ID adults living with family in Taiwan reported high quality-of-life. Again, self-ratings beat outsider guesses, matching the 2016 benefit gap.
Y-Spanoudis et al. (2011) looked at sterilisation choices. Families and professionals made the call; women with ID had little say. That qualitative study and the 2016 survey together paint a clear picture: when adults with ID are not asked, their preferences are missed.
Why it matters
Before you start a study or program, ask the adult with ID first. Use plain-language consent forms and picture scales. Their self-rating is the best measure of benefit, not family or staff opinion. Build this step into your IRB packet and staff training.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Add one question to your intake: 'What do you hope to get from this program?' Ask the adult, not the parent.
02At a glance
03Original abstract
Including adults with intellectual disability in research promotes direct benefits to participants and larger societal benefits. Stakeholders may have different views of what count as benefits and their importance. We compared views on benefits in research with adults with intellectual disability among adults with intellectual disability, family and friends, service providers, researchers, and institutional review board members. We found that adults with intellectual disability value direct and indirect research benefits, and want to participate in research that offers them. Other stakeholders generally see less value in direct benefits and predict more tempered interest in research participation as compared to adults with intellectual disability. To promote respectful research participation, research policy and practice should incorporate the views of adults with intellectual disability.
Intellectual and developmental disabilities, 2016 · doi:10.1177/1740774515597701