Are individuals with intellectual and developmental disabilities included in research? A review of the literature

Abstract

The rights of people with intellectual and developmental disabilities to be included in research is increasingly being recognised. Given this, there is a need for further understanding of the extent to which inclusive research practices with self-advocates have been successful in creating meaningfully collaborative research teams. The following review examined how often descriptions of methods and practice have aligned in inclusive research with people with intellectual and developmental disabilities, using the categories of advisory, leading and controlling, and collaborative group. Did the description of the research process fit the type of inclusive approach intended? A sample of 53 studies was systematically selected. Findings indicated that 48 of the 53 studies described their research process in terms of the advisory (n = 3), leading and controlling (n = 4), or collaborative group category (n = 41) and matched their intention, while 5 of the 53 studies described a collaborative group approach but enacted an advisory group approach. While the majority of articles described their process as congruent with the intentions that they set out, improvement in inclusive research practices is still needed. The use of a collaborative approach dominated, and leadership and control by people with intellectual and developmental disabilities was rare. Future research should explore the potential for self-advocates to lead. Also, the majority of the studies tended to collaborate with individuals with mild to moderate intellectual and developmental disabilities. Future research should consider a commitment to including individuals with severe to profound intellectual and developmental disabilities.