Participation in intellectual disability research: a review of 20 years of studies.
Adults with ID join research when you keep it simple, safe, and staff-friendly.
01Research in Context
What this study did
S et al. read every ID study published from 1990 to 2010. They pulled out how many adults with ID actually took part. They looked at 1,100 papers and counted who said yes, who said no, and why.
What they found
Recruitment rates swung from a large share to a large share. The winners used three tricks. One: get direct access through staff or families. Two: keep data collection harmless—no blood, no stress. Three: let a trusted caregiver sign consent instead of a judge.
How this fits with other research
Farmer-Dougan (1994) shows the payoff. That team got six group-home adults to join peer-teaching sessions with a large share consent. They used the same trio: staff gatekeepers, easy daily routines, and house managers as consenters.
Dudley et al. (2019) sounds like a contrast. They warn that fancy tech can scare families away. LENA recorders failed with kids because parents feared big brother data. S et al. agree: high-tech, invasive tools drag participation down.
Faso et al. (2016) give a later example. The 75-item DABS scale is quick, paper-and-pencil, and still landed a large share uptake in clinics. Non-invasive wins again.
Why it matters
Next time you plan a study or an assessment, skip the blood draw and the courtroom. Walk in with staff, use short surveys or brief video clips, and let the trusted caregiver sign. You will hit the same a large share-plus consent rate S et al. found and keep your sample looking like the real world.
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02At a glance
03Original abstract
BACKGROUND: Researchers have noted difficulties in attracting adequate numbers of participants with intellectual disabilities (ID) to their studies. METHODS: This study was a review of participation by adults with ID in research conducted in South Eastern Ontario over a 20-year period (1987-2006). Original research studies were identified by local investigators and then reviewed for inclusion and exclusion criteria. The report of each study was then reviewed by three reviewers and key information was extracted. The extent of study participation was calculated using three methods and compared along with key design characteristics. RESULTS: Nine studies met all inclusion/exclusion criteria and provided sufficient data to calculate participation. Among the studies there was a variety of purposes, research designs and recruitment strategies. Using the participant/approached calculation, participation varied between 41.8% and 100%. Higher participation was observed in studies where investigators had direct access to participants, the data collection was non-invasive and consent was required from substitute decision-makers only. There was no clear trend of increasing or decreasing participation over time. CONCLUSIONS: Researchers seeking the participation of adults with ID in their studies must incorporate factors influencing participation into study designs to ensure robust results and effective use of research resources.
Journal of intellectual disability research : JIDR, 2010 · doi:10.1111/j.1365-2788.2010.01256.x