Participation in intellectual disability research: a review of 20 years of studies

Abstract

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.

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

“…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. Indeed, a majority of the eventual participants recruited to the project followed personal visits to meetings of the syndrome-specific support groups.…”

A Digital Decision Support Tool to Enhance Decisional Capacity for Clinical Trial Consent: Design and Development (Preprint)

“…To date, most research on individuals with FXS has been noninvasive, limited to parent surveys and secondary assessment of clinical data [13,14]. Studies such as these typically involve straightforward consent/assent processes or parental consent.…”

“…The knowledge base surrounding the decisional capacity of those with ID and FXS is inadequate, and recent reviews conclude that the literature is limited in both scope and focus [14,16]. The few studies that have examined ways to support individuals with ID in the informed consent process have found that the presentation of information is important, given that language skills, memory, and previous decision-making all have an impact on ability to consent [16].…”

Applying the Mental Capacity Act to research with people with learning disabilities

“…It has been suggested that by providing research information in an accessible way, some of the issues relating to informed consent can be overcome. In a review of Canadian studies, Cleaver et al (2010) reported that participation rates were higher when people with learning disabilities were contacted directly, rather than researchers relying on third parties to seek consent. Underpinning discussions about how best to include people with learning disabilities in research is an acknowledgement of the importance of helping people to understand the nature of their involvement, whether that be for people with communication difficulties (Cameron & Murphy 2007), those with visual impairments and learning disabilities (Waight & Oldreive 2012) or for research specifically about health advocacy (Lennox et al 2005).…”