Janet Njelesani, assistant professor of occupational therapy and IHDSC faculty affiliate, has recently published an article in PLOS One titled “Inclusion of Children with Disabilities in Qualitative Health Research, ” with Vongai Mlambo, Tsendenia Denekew, and Jean Hunleth. The article provides a scoping review that critically examines the participation of children with disabilities in health research.
Children with disabilities have the right to participate in health research so their priorities, needs, and experiences are included. Health research based primarily on adults report risks misrepresenting children with disabilities and their needs, and contributes to exclusion and a lack of diversity in the experiences being captured. Prioritizing the participation of children with disabilities enhances the relevance, meaningfulness, and impact of research. In this study, the authors examined a total of 62 studies that met the study’s criteria. They found that children with disabilities are not participating in the design and implementation of health research. Rather, further effort should be made by health researchers to incorporate children with a broad range of impairments drawing on theory and methodology from disability and childhood studies and collaborating with people who have expertise in these areas. Furthermore, an array of multi-method inclusive, accessible, adaptable, and non-ableist methods should be available to enable different ways of expression.