Title: Opening the door to university health research: recommendations for increasing accessibility for individuals with intellectual disability
Legend: The purpose of this paper was to develop recommendations for researchers to increase the accessibility of university health research and to support the inclusion of adults with intellectual disability as participants. A literature review, consultation with the university ethics review board, and review of United States federal regulations was completed to identify barriers to research participation for individuals with intellectual disability. Eleven key barriers to research participation were identified including gaps in researchers’ knowledge, lack of trust, accessibility and communication challenges, and systematic exclusion, among others. The working group compiled seven general recommendations for university health researchers to guide inclusion efforts. Recommendations included: 1) address the knowledge gap, 2) build community partnerships, 3) use plain language, 4) simplify consent and assent processes, 5) establish research capacity to consent, 6) offer universal supports and accommodations, and 7) practice accessible dissemination. In addition, four products were created as part of the working group to be shared with researchers to support the inclusion of participants with intellectual disabilities. 1) Supports I Need Checklist, 2) Plain language glossary of health and research terms, 3) Understanding Consent and Assent in Plain Language, 4) Easy-Read Paper Template. The recommendations discussed could increase accessibility for a broader range of research participants and promote the inclusion of individuals with intellectual disabilities to advance health equity in population health research.
Citation: St. John, B., Hickey, E., Kastern, E., Russell, C., Russell, T., Mathy, A., Peterson,B., Wigington, D., Pellien, C., Caudill, A., Hladik, L., & Ausderau, K. K., (2022). Opening the door to university health research: Recommendations for increasing accessibility for individuals with intellectual disability. International Journal for Equity in Health, 21(1), 1-13. https://doi.org/10.1186/s12939-022-01730-4
Abstract: Advances in health equity rely on representation of diverse groups in population health research samples. Despite progress in the diversification of research samples, continued expansion to include systematically excluded groups is needed to address health inequities. One such group that is infrequently represented in population health research are adults with intellectual disability. Individuals with intellectual disability experience pervasive health disparities. Representation in population health research is crucial to determine the root causes of inequity, understand the health of diverse populations, and address health disparities. The purpose of this paper was to develop recommendations for researchers to increase the accessibility of university health research and to support the inclusion of adults with intellectual disability as participants in health research.
About the Investigator: Karla Ausderau, PhD
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