This page provides resources and information about conducting community-based research with people with disabilities, including ethical concerns and unique issues.
According to Canadian Institutes of Health Research (2024), disability scholarship involves several issues. Systemic barriers in accessing research funding significantly impact researchers with disabilities. Despite efforts to promote equity, data from CIHR indicates that researchers who self-identify as having a disability have lower success rates in securing grants compared to their non-disabled counterparts. This disparity suggests that additional measures are necessary to ensure equitable access to research funding (CIHR, 2024). Disability scholarship must recognize the intersectionality of identities. Researchers need to be sensitive to the overlapping impacts of disability, race, gender, and other social determinants of health. Intersectional approaches are crucial for understanding the multifaceted experiences of individuals with disabilities and addressing their unique challenges in a holistic manner (CIHR, 2024).
Power dynamics are a significant concern in CBR with people with disabilities. Researchers must strive to create equal partnerships where participants are active co-researchers rather than mere subjects. This involves recognizing and addressing inherent power imbalances, which are often exacerbated by social and institutional structures (Van den Breemer et al., 2024).
It is critical to address the special vulnerabilities that affect individuals with disabilities. Recognizing the potential extra strain that study participation may have on them and their families is part of this. To guarantee that participation in the research does not increase participants' vulnerabilities, practical support measures are crucial. These include making accommodations and taking into account participants' physical and mental health needs (Richards et al., 2018).
By giving participants new opportunities to share their experiences and insights, creative and interactive approaches in CBR can empower them. In ways that conventional research methodologies might not be able to, participants with disabilities can share their viewpoints using techniques including photovoice, drama, and community-based arts research (Richards et al., 2018). These methods can dispel myths regarding impairments and encourage participants to be more socially inclusive and self-assured.
Action Research for Co-development (ARCO). (2023, September 1). Community based Emancipatory Disability Research: methods & potentialities. https://www.arcolab.org/en/community-based-emancipatory-disability-research/#:~:text=Community%2Dbased%20Emancipatory%20Disability%20Research,and%20effective%20participation%20in%20society
Atchison, C. L., Hawthorne, T. L., Torres, H. R., Visaggi, C. C., Bencivenga, P., Haralson, J., Relyea, D., & Jarrett, O. S. (2022). Designing inclusive community-based geography research experiences across the spectrum of ability. Journal of Geography in Higher Education, 46(4), 541–559. https://doi.org/10.1080/03098265.2021.1928026
Benz, C., Scott-Jeffs, W., McKercher, K. A., Welsh, M., Norman, R., Hendrie, D., Locantro, M., & Robinson, S. (2024). Community-based participatory-research through co-design: supporting collaboration from all sides of disability. Research Involvement and Engagement, 10(1), 47–47. https://doi.org/10.1186/s40900-024-00573-3
Canadian Institutes of Health Research. (2024). Removing barriers to funding for racialized people and persons with a disability. Retrieved from https://cihr-irsc.gc.ca/e/52047.html
Councils of Canadians with Disabilities. (2024, February 29). Have Your Say on Community-Based Research. http://www.ccdonline.ca/en/socialpolicy/access-inclusion/Call-for%E2%80%93Community-Based-Research-Materials9Feb2024
Farkas, T. N., Mendy, J., & Kargas, N. (2020). Enhancing Resilience in Autistic Adults Using Community-based Participatory Research: A Novel HRD Intervention in Employment Service Provision. Advances in Developing Human Resources, 22(4), 370–386. https://doi.org/10.1177/1523422320946293
Putnam, M., Morgan, K., Hollingsworth, H., Desai, R. H., Chen, S.-W., & Stark, S. L. (2024). Consistency of participation over time among persons aging with physical disability as measured by a tool designed for use among community-based organizations. Disability and Health Journal, 17(1), 101519–101519. https://doi.org/10.1016/j.dhjo.2023.101519
Richards, M., Lawthom, R., & Runswick-Cole, K. (2019). Community-based arts research for people with learning disabilities: challenging misconceptions about learning disabilities. Disability & Society, 34(2), 204–227. https://doi.org/10.1080/09687599.2018.1522243
Rooney-Kron, M., & Dymond, S. K. (2022). Participation of Students With Intellectual Disability in Community-Based Work Experiences: A Scoping Review. Research and Practice for Persons with Severe Disabilities, 47(2), 90–110. https://doi.org/10.1177/15407969221093378
Rosemarie van den Breemer, Grete Arnesdatter Steigen, Camilla Tostrup Lyngar, & Inger Marie Lid. (2024). Vulnerability in Inclusive Research: Exploring Co- and Professional Researchers’ Experiences in a Community-Based Participatory Project on the Disability Family. International Journal of Qualitative Methods, 23. https://doi.org/10.1177/16094069241236181
Warfield, M. E., Lorenz, L., Ali, H. N., & Gittell, J. H. (2022). Strengthening Community Participation by People With Disabilities in Community-Based Group Homes Through Innovative Action Research. Frontiers in Public Health, 10, 747919–747919. https://doi.org/10.3389/fpubh.2022.747919