Original ArticleA quantitative study of attitudes toward the research participation of adults with intellectual disability: Do stakeholders agree?
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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A scoping review documenting cancer outcomes and inequities for adults living with intellectual and/or developmental disabilities
2021, European Journal of Oncology NursingCitation Excerpt :There are pragmatic reasons for using proxies, due to limited language and comprehension, however, it was unclear in some studies whether the participant was a person with IDD or a proxy; as well, the conditions under which proxies were chosen over adults with IDD were not specified. There is evidence emphasizing the desire for adults with IDD to be directly included in research that affects their health (McDonald et al., 2018), and that their inclusion can positively influence their own feelings of value and control (McDonald et al., 2016). Lack of clarity within some of the included studies about who was reporting limits the ability to accurately represent the experiences and needs of adults with IDD.
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2020, Disability and Health JournalCitation Excerpt :Other work has shown that those with NDDs want to be active participants in research, starting with the development of research questions and study design.18,19 We must hear directly from individuals themselves to sufficiently understand their preferences, as their values and goals may differ from those of families, caregivers, surrogates, or those with more severe impairments.20 Individuals with NDDs face important challenges during young adulthood, i.e., the late teens, twenties, and thirties.21
The inclusion of adults with intellectual disabilities in health research – challenges, barriers and opportunities: a mixed-method study among stakeholders in England
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