Building Research Capacity and Engagement With People With Intellectual and Developmental Disabilities (IDD)

PURPOSE: The power differential that exists between researchers and participants has increasingly been recognized, especially for individuals from marginalized populations including people with intellectual and developmental disabilities (IDD). This differential becomes especially important when considering the significant health disparities for individuals with IDD that result in limited healthcare and poor health outcomes including decreased life expectancy, increased co-morbidity of conditions, and increased prevalence of chronic conditions such as obesity, cardiovascular disease, and diabetes. People with IDD and their caregiving communities typically lack the opportunities for research participation or to be engaged partners in the research process that would provide valuable insight into meaningful questions, methodological processes, and outcomes that could have a direct impact on their physical and social health, reducing overall health disparities. This purpose of this study was to develop a skilled community of stakeholders to develop capacity for people with IDD and their caregivers to participate in research as consumers, co-researchers, and participants.

DESIGN: This study was done in partnership with Special Olympics (SO) and Special Olympics International (SOI). Participants were recruited through SO from a diverse group of state agencies to participate as collaborators forming regional working groups in Wisconsin, New York, South Carolina, Rhode Island, and Arizona. Each working group consisted of individuals with ID, caregivers, and community members. Groups worked to support development and refinement of the Toolkit with the aim to support engagement of people with IDD in the development of research and identification of research priorities related to health disparities, health promotion, and access to health services for people with IDD.

METHOD: To develop a skilled community of stakeholders, we collaborated with Special Olympics to create capacity building interim working groups to develop a research toolkit and curriculum for Individuals with ID. The research team worked with state teams to develop and refine training modules focusing on leadership, research fundamentals, and health to train a skilled community of stakeholders. Then, the Toolkit was implemented in two states for a pilot and further reviewed by all members. The final step in this project is the refinement of regional and national research priorities and national dissemination of the research engagement Toolkit to Special Olympics and relevant community organizations.

RESULTS: We created a toolkit to support the engagement of people with IDD in the development of research. The toolkit is the first of its kind to provide an accessible, structured process with the necessary training for people with IDD and their paid and unpaid caregivers to be engaged partners in the research process. In collaboration with the state and national partners, we have identified research aims aligning with identified health disparities for people with IDD for future comparative effectiveness research.

CONCLUSION: Engagement with relevant stakeholders provides the opportunity to prioritize research aims and outcomes that will have the most significant impact on addressing health disparities for people with IDD. This toolkit is the first of its kind to provide an accessible, structured process for people with IDD and their caregivers to be engaged partners in the research process. Through collaboration, traditional research methodologies are challenged to confront these long-standing barriers and develop procedures inclusive for people with IDD.

References

Krahn, G.L., & Fox, M. H. (2014). Health disparities of adults with intellectual disabilities: What do we know? What do we do? Journal of Applied Research in Intellectual Disabilities, 27(5), 431 446. doi:10.1111/jar.12067

Nind, M., & Vinha, H. (2014). Doing research inclusively: Bridges to multiple possibilities in inclusive research. British Journal of Learning Disabilities, 42(2),102 109