Beating the barriers: recruitment of people with intellectual disability to participate in research

Abstract

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.

Environmental Evaluations and Modifications to Support Aging at Home With a Developmental Disability

“…The fact that this person often does not play a role in the daily activities of the person they are charged to protect can further complicate and delay the consent process (Lennox et al, 2005). If adults with developmental disabilities live with their families and have not accessed ongoing funding or support, such as Medicaid or Supplemental Security Income, they are likely to be unknown to service provider organizations and "invisible" (Lennox et al, 2005).…”

“…Researchers not only need the consent of an organization's senior staff, but they also need more than token cooperation from subordinates (Lee, 1993). Because many staff at community provider organizations has complex and overwhelming workloads, research may not be their priority or concern (Lennox et al, 2005). Likewise, familial caregivers of adults with developmental disabilities, often their elderly parent(s), are likely to find the daily challenges associated with caregiving and their own age-related limitations overwhelming and simply lack the energy to participate in activities that are not essential to their daily well-being (Lennox et al, 2005;Schofield et al, 1999;Todd & Shearn, 1996).…”

“…Problems identifying and recruiting minority and at-risk populations have been well-documented (Anderson, Fogler, & Dedrick, 1995;Lewis et al, 1998;Neufeld et al, 2001). Difficulties gathering samples of people with intellectual disabilities in particular have been attributed to substituted decision making and obtaining guardian or parental consent, the limited literacy of the population, anti-intellectualism and insistence on immediate application, the threat of litigation against service providers, and organizational gate-keeping practices (Lee, 1993;Lennox et al, 2005;Siegel & Ellis, 1985).…”

“…Researchers have noted the difficulty in identifying, accessing, and recruiting adults with developmental disabilities as research subjects for both medical and non-intrusive psychological and behavioral research studies (Beange, McElduff, & Baker, 1995;Lennox, Beange, & Edwards, 2000;Lennox et al, 2005;Siegal & Ellis, 1985). Problems identifying and recruiting minority and at-risk populations have been well-documented (Anderson, Fogler, & Dedrick, 1995;Lewis et al, 1998;Neufeld et al, 2001).…”

“…However, for the independent or university researcher, recruitment is often dependent on the goodwill of organizations (Lennox et al, 2005). Researchers not only need the consent of an organization's senior staff, but they also need more than token cooperation from subordinates (Lee, 1993).…”