Barriers to Conducting Research With Community-Dwelling Adults Who Have Intellectual Disabilities

Data collection challenges in community settings: insights from two field studies of patients with chronic disease

“…Even in our two similar research studies, differences in recruiting methods, sample characteristics, and data capture methods resulted in dissimilar data collection challenges. This means that lessons from our experiences may be transferrable but should be complemented by lessons learned from other studies (for a few additional lessons learned, see [10, 11, 13, 16-18, 20, 43-45]). Fortunately, we found ways to manage and sometimes avoid these challenges.…”

“…Fortunately, we found ways to manage and sometimes avoid these challenges. Below we list a number of strategies that were helpful for us, as well as others who have conducted contextual or community-based research [18, 21, 22, 43, 45]. …”

Out of sight, out of mind? The inclusion and identification of people with intellectual disability in public health research

“…Although many people with intellectual disability are able to provide informed consent, others require a substitute decision maker, which can complicate recruitment processes and add extra time to studies. 15,16 Furthermore, evidence suggests that service organisations who are often approached given their work with people often 'gate-keep' access to their clients and members. 15,19 Third, research ethics committees sometimes place protective conditions on research that result in exclusions of people with cognitive impairment.…”

Navigating the maze: ethics approval pathways for intellectual disability research: Table 1

“…Over the last decade, there have been significant changes in the processes of gaining ethics approval in Australia and elsewhere, and especially for studies involving people with ID and/or multiple agencies 1 7 19 21. In many cases, requirements have become lengthier and more rigorous, increasing the time and financial costs to researchers,24 25 and creating particular problems for postgraduate candidates or researchers on fixed-term grants with yearly reporting requirements.…”

“…The use of gatekeepers or facilitators for study recruitment may lead to dislocation of members of the study team from the recruitment process,18 and at the same time it can substantially inhibit follow-up of non-responders,19 as occurred in our study. A recent review of studies involving people with ID found that higher rates of recruitment were achieved when researchers had personal access to potential participants or to substitute decision makers,20 and if the data collection was non-invasive, as was the case with our study.…”