'You need to let your voice be heard': research participants' views on research.
Adults with ID will engage if the study clearly benefits them and they can trust you—so share power at every step.
01Research in Context
What this study did
Robertson et al. (2013) sat down with the adults who have intellectual disabilities. They asked open questions about what it feels like to be in a research project. The team wanted to know what helps these adults say yes, stay engaged, and feel respected.
What they found
Three clear messages came out. First, people want research that makes life better, not just fills a form. Second, they need to trust the researcher before they open up. Third, they want control over what they share and when they stop. Without these, they walk away.
How this fits with other research
Thompson et al. (2018) took the next step and actually hired adults with ID as paid co-researchers. Those co-researchers said the job gave them new skills and pride, showing the 2013 wish for meaningful roles can be met. van der Miesen et al. (2024) counted real studies and found 78 % still lock out adults with ID, proving the fears voiced in 2013 are alive today. Morrison et al. (2017) asked the same group to rate harms; being left out scored worse than most study risks, giving numbers to the 2013 cry for inclusion.
Why it matters
When you plan a study or an intake, build in choice from day one. Use plain-language consent forms, let participants pick the meeting place, and tell them how the data will help them or others. These small moves boost engagement and keep your IRB happy. They also echo the call from adults with ID: nothing about us without us.
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Add a plain-language exit option to your next data sheet: 'You can stop anytime—no one will be upset.'
02At a glance
03Original abstract
BACKGROUND: Persons with intellectual and developmental disabilities have had regrettably few opportunities to voice their opinions on aspects of research with which they have had direct experience. Understanding and responding to these views can contribute to policies and practices that increasingly treat people as they desire to be treated. METHODS: We conducted individual interviews and focus groups with 16 adults with intellectual and developmental disabilities to examine their perspectives on participating in research. RESULTS: Our analysis indicates that adults with intellectual and developmental disabilities want to engage in research to improve their quality of life and to have greater access to a worthwhile activity through more active participation. Our results also highlight trust as a critical ingredient in the success of research with this group. CONCLUSIONS: Our findings suggest that despite ethical challenges, researchers can and should pursue research that has the potential to improve the lives of persons with intellectual and developmental disabilities. Such research is more likely to be both ethical and successful if researchers pay attention to enhancing autonomy and person-centredness, while at the same time engendering participant trust.
Journal of intellectual disability research : JIDR, 2013 · doi:10.1111/j.1365-2788.2011.01527.x