Bigby, C., Frawley, P., & Ramcharan, P. (2014). Conceptualizing Inclusive Research with People with Intellectual Disability. Journal of Applied Research in Intellectual Disabilities, 27(1), 3–12. https://doi.org/10.1111/jar.12083 

Cedarville University

Individuals with intellectual disabilities can serve as active members of research teams in both qualitative and quantitative studies, participating in the research process rather than merely serving as subjects.

Research Involvement of Individuals with Intellectual Disabilities

“Walmsley (2001) coined the term ‘inclusive research’ to denote research involving people with intellectual disability as ‘more than just subjects or respondents’’

Other words to describe it include participatory, collaborative, and co-researching, action, and emancipatory. The words are not necessarily true, accurate, or applicable as participation of individuals with ID has not been exclusively restricted to qualitative research.

Inclusive Research

Raskoff, S. Z., Thurm, A., Miguel, H. O., Kim, S. Y. H., & Quezado, Z. M. N. (2023). Pain research and children and adolescents with severe intellectual disability: ethical challenges and imperatives. The Lancet. Child & adolescent health, 7(4), 288–296. https://doi.org/10.1016/S2352-4642(22)00346-7

Pain research and children and adolescents with severe intellectual disability: ethical challenges and imperatives

Children with Intellectual Disability are less likely than typically developing children to be included in clinical research, even though they are more likely to have painful comorbidities and medical interventions.

Involvement of Children with Intellectual Disability in Research

Fair participation selection protects vulnerable populations. The persons recruited for research should be selected based on the aims of the study and not vulnerability, privilege, or other unrelated factors. Those with severe intellectual and developmental disabilities should only be involved in research if relevant data cannot be collected without them.

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