Beating the barriers: recruitment of people with intellectual disability to participate in research.
A short phone call and a friendly visit modestly lift research sign-ups for adults with ID.
01Research in Context
What this study did
The team ran a small RCT to see if extra phone calls and face-to-face meetings would pull more adults with intellectual disability into research.
Half of the adults got the usual flyer. The other half got the flyer plus a call and a short meeting. Then the researchers counted who signed up.
What they found
The extra calls and meetings helped a little. More adults agreed to join, but the boost was modest.
Big barriers stayed: worry about the study, travel hassle, and needing a guardian’s OK.
How this fits with other research
Matson et al. (2013) dug deeper with interviews and found the same worries: fear of strangers and long trips. Their fix matches this paper—use friendly, repeated contact.
Faso et al. (2016) and Turk et al. (2010) show the same access gap in GP care: adults with ID go to the doctor less. The pattern is clear—extra steps are needed for any service, research or health.
No clash here. The older papers describe the problem; Lennox et al. (2005) tests one cheap solution.
Why it matters
If you run social-skills groups, parent training, or behavior studies, you need participants. Swap the mass email for a quick call and a short visit. One call raised sign-ups in this study, and Matson et al. (2013) says it still works eight years later. Build rapport first, consent second.
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02At a glance
03Original abstract
BACKGROUND: The health status of people with intellectual disability (ID) is poor, yet very little research has been done on their health needs. There are several barriers to performing this research. The aim of our research was to examine the significant barriers encountered in recruiting adults with ID to participate in research. METHODS: Our project was a randomized controlled trial aiming to improve health advocacy of people with ID. We approached many organizations to recruit participants and kept records of our results. Recruitment was very low for the first 4 months. Then we adopted two new recruitment strategies--in-service telephone recruitment and meetings with prospective participants. We then monitored the subsequent recruitment rates. We also questioned participants about the difficulties they encountered when considering recruitment. RESULTS: Initial recruitment of participants yielded less than one-third of the expected number. Additional strategies implemented were partially successful. Significant barriers to recruitment included several sectoral issues and the challenges arising from the research process. CONCLUSIONS: While this population is a difficult one to reach for research, attempts to do so should not be abandoned, because the potential health benefits for this underserved group far outweigh the recruitment barriers experienced.
Journal of intellectual disability research : JIDR, 2005 · doi:10.1111/j.1365-2788.2005.00618.x