دورية أكاديمية

Opening the door to university health research: recommendations for increasing accessibility for individuals with intellectual disability

التفاصيل البيبلوغرافية
العنوان: Opening the door to university health research: recommendations for increasing accessibility for individuals with intellectual disability
المؤلفون: Brittany M. St. John, Emily Hickey, Edward Kastern, Chad Russell, Tina Russell, Ashley Mathy, Brogan Peterson, Don Wigington, Casey Pellien, Allison Caudill, Libby Hladik, Karla K. Ausderau
المصدر: International Journal for Equity in Health, Vol 21, Iss 1, Pp 1-13 (2022)
بيانات النشر: BMC, 2022.
سنة النشر: 2022
المجموعة: LCC:Public aspects of medicine
مصطلحات موضوعية: Intellectual disability, Health research, Accessibility, Inclusive, Research, Recommendations, Public aspects of medicine, RA1-1270
الوصف: Abstract Background 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. Methods A comprehensive 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. A collaborative stakeholder working group developed recommendations and products to increase the accessibility of university research for participants with intellectual disability. Results 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. Together the stakeholder 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 stakeholder working group to be shared with researchers to support the inclusion of participants with intellectual disability. 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. Conclusion Community members and individuals with intellectual disability want to be included in research and are eager to engage as research participants. It is the responsibility of the researcher to open the door to university health research. The recommendations discussed in this paper could increase accessibility for a broader range of research participants and, in particular, promote the inclusion of individuals with intellectual disability to advance health equity in population health research.
نوع الوثيقة: article
وصف الملف: electronic resource
اللغة: English
تدمد: 1475-9276
Relation: https://doaj.org/toc/1475-9276
DOI: 10.1186/s12939-022-01730-4
URL الوصول: https://doaj.org/article/8910acc5acb04a62a8f303d296af3600
رقم الأكسشن: edsdoj.8910acc5acb04a62a8f303d296af3600
قاعدة البيانات: Directory of Open Access Journals
الوصف
تدمد:14759276
DOI:10.1186/s12939-022-01730-4