Original Article
A quantitative study of attitudes toward the research participation of adults with intellectual disability: Do stakeholders agree?

https://doi.org/10.1016/j.dhjo.2017.12.004Get rights and content

Abstract

Background

Attitudes toward the research participation of adults with intellectual disability inform research policy and practice, impact interest in and support for research participation, and promote or discourage the generation of new knowledge to promote health among adults with intellectual disability. Yet we know little about these beliefs among the public and the scientific community.

Objective/Hypothesis

We quantitatively studied attitudes among adults with intellectual disability, family and friends, disability service providers, researchers, and Institutional Review Board (IRB) members. We predicted that adults with intellectual disability, and researchers would espouse views most consistent with disability rights, whereas IRB members, and to a lesser degree family, friends, and service providers, would espouse more protective views.

Methods

We surveyed five hundred and twelve members of the five participant stakeholder groups on their attitudes toward the research participation of adults with intellectual disability.

Results

We found broad support for research about people with intellectual disability, though slightly more tempered support for their direct participation therein. In general, IRB members and to some extent adults with intellectual disability endorsed direct participation less than others. We also found that adults with intellectual disability strongly believed in their consent capacity.

Conclusions

Resources should be directed toward health-related research with adults with intellectual disability, and interventions should be pursued to address ethical challenges and promote beliefs consistent with human rights.

Section snippets

Instruments

We developed the Project ETHICS cross-sectional survey using a multi-prong approach14,15: focus groups,9,11 prior research,16, 17, 18, 19, 20, 21 an Expert Panel comprised of representatives of each of the 5 participant groups (none of whom were survey respondents), and cognitive interviews. The parent survey had sections on benefits, harms, and safeguards in research with adults with intellectual disability22, 23, 24 though we focus here on the following:

Sample

Five hundred and twelve individuals from the 5 stakeholder groups participated: 101 adults with intellectual disability who self-reported their disability, 98 family members and close friends of adults with intellectual disability who had provided them unpaid support in the previous year (more than 80% were family members), 109 professionals who provided social services to adults with intellectual disability in the previous year (including primarily direct support providers, managers and other

Discussion

Adults with intellectual disability experience alarming disparities in health and its social determinants; although urgent calls have been made to pursue scientific advances to reduce these disparities, ethical and social issues pose challenges to conducting this research.7,30 Underlying these challenges are differential beliefs about the value of this research, the value of directly including adults with intellectual disability in research, and appropriate consent practices; perceptions that

Funding

We received support for this research from the Eunice Kennedy Shriver National Institute of Child Health & Human Development of the National Institutes of Health under Award Number R21HD075078 (PI Katherine McDonald). The content is solely ours and does not necessarily represent the official views of the National Institutes of Health. For more about Project ETHICS, see http://bbi.syr.edu/projects/ETHICS/index.html.

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