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

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.

Family Perspectives on In-Home Multimodal Longitudinal Data Collection for Children Who Function Across the Developmental Spectrum

“…Unequal access to research opportunities has been described as both a legal and ethical issue. 29 Despite research showing that communities with disabilities are keen to engage in research, 30 many studies either directly exclude these groups or engage in indirect exclusion by lacking accessible methods, thus contributing to disparities in health research and care. Families recognized adapted in-home methods as having the potential to increase accessibility to research for those with developmental and medical needs and in rural and remote communities.…”

Management of Down Syndrome–Associated Leukemias

“…Local and state regulations offer guidelines to determine capacity for consent in adults with cognitive impairment. When developing a clinical trial that includes individuals with DS, it is important to ensure that adequate provisions are in place to assist in determining consent capacity, and to allow for waivers of consent according to local guidance to facilitate inclusion of young adults with intellectual disability and improve their access . As the life expectancy of individuals with DS increases, these considerations will become increasingly relevant .…”

Do Tokenismo à Autodeterminação: Considerações Éticas na Investigação com Pessoas com Deficiência Intelectual

“…De forma concreta, as adaptações razoáveis promotoras de um melhor suporte das necessidades das pessoas com DI no processo de investigação científica podem incluir: a) Adoção de abordagens visuais e/ou baseadas em imagens (Boxall & Ralph, 2009;McDonald, 2021); "Esta subdimensão diz respeito a um trabalho de identificação de um conjunto de adaptações razoáveis implementadas no contexto da investigação científica, por forma a acomodar características específicas dos indivíduos (...). " b) Consideração de tecnologias de comunicação aumentativa e ou alternativa desde o desenho de investigação (Boxall & Ralph, 2009;Herron et al, 2015;Taylor & Baladin, 2020); c) Desenvolver formatos acessíveis para o consentimento informado, que podem incluir a linguagem e a escrita acessível, por exemplo, pictogramas ou formatos easy-to-read (Boxall & Ralph, 2009;Drozd et al 2021;Goldsmith & Skirton, 2015;Northway et al, 2014;St. John et al, 2022;Thomson et al, 2015); Por seu turno, estas adaptações parecem despertar algumas preocupações relacionadas com a validade do próprio processo, por se considerar que delas podem decorrer algumas ameaças, enviesamentos e/ou variáveis parasitas.…”

“…Findo o processo de trabalho de campo, associado ao contato mais direto com as PcDI, foram também identificadas boas práticas a considerar, nomeadamente: a) Rever entrevistas efetuadas com as pessoas participantes, bem como relatórios ou artigos delas resultantes, por forma aferir como as partes se sentem com a sua divulgação (Van Goidsenhoven & De Schauwer, 2022;Zaagsma et al, 2022); b) Disponibilizar sumários das investigações em formatos acessíveis, permitindo às PcDI terem também acesso às suas conclusões (Boxall & Ralph, 2009); c) Utilizar vários media e estratégias no processo de disseminação de resultados dos estudos, fomentando a acessibilidade aos resultados a públicos não académicos. Aqui, podem incluir--se newsletters, vídeos, redes sociais, entre outros (St. John et al, 2022); d) Atribuir às PcDI crédito pelas suas contribuições para os estudos (Crook et al, 2016).…”