A survey study of the attitudes and experiences of adults with intellectual disability regarding participation in research.

ABSTRACT

BACKGROUND: Historically, people with intellectual disability have been exploited in and excluded from scientific research. To facilitate greater representation of adults with intellectual disability as research respondents, we sought to understand their interest in research participation and factors affecting their willingness to volunteer to participate, such as the core value of trust. METHODS: Our survey measured attitudes of adults with intellectual disability towards research in general and research specifically involving adults with intellectual disability as respondents, as well as their prior research experiences, trust of researchers and interest in future research participation. RESULTS: Participants reported positive attitudes towards research and strong interest in future participation opportunities, and trust of researchers was positively correlated to both. The belief that 'research about adults with intellectual disability is very important' also predicted participants' interest in future research participation. CONCLUSIONS: Our findings indicate that adults with intellectual disability support the direct involvement of adults with intellectual disability in research as respondents. Trustworthy rapport with researchers and positive views about research foster greater inclusion of this population.