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.

Keywords:

• Intellectual and developmental disabilities
• inclusive research
• action research

Disclosure statement

No potential conflict of interest was reported by the authors.

Postscript

In the above article, we conducted a scoping review of peer-reviewed publications describing inclusive approaches to research with individuals with intellectual and developmental disabilities. Our aim was to assess researchers’ descriptions of inclusive practices and to apply an analytic matrix of inclusion inductively developed by Bigby, Frawley, and Ramcharan (2014), who identified three approaches to inclusive research with individuals with intellectual and developmental disabilities based on a review of the literature: advisory, leading and controlling, or collaborative. We deductively used this framework to assess and interpret the level of inclusion as described in identified published works, recognising that researchers may well not have included the fulsome description of the inclusive methods used for numerous reasons. That said, the manuscript by Nicolaidis, Raymaker, Katz, et al. (2015) was misrepresented. Nicolaidis et al. described how they used a Steering Committee and two community advisory boards comprised of a diverse range of stakeholders including individuals with developmental disabilities to develop an accessible survey about violence and health. Our interpretation emphasised the use of advisory boards as a mechanism for enacting inclusion leading us to the finding that the inclusion described by Nicolaidis et al. was advisory in nature. This categorisation overlooked the degree to which the team members engaged in participatory and collaborative methods, thus underrepresenting the degree to which this team engaged in inclusive research practices. Moreover, it has been pointed out that the published work of Nicolaidis et al. is a part of a much larger program of research committed to community-based participatory research. Given the scope of our work (e.g., inclusion criteria), we did not consider this broader community-based participatory research program. We encourage readers interested in community-based participatory research to further explore this exemplary program as it demonstrates strategic ways and commitments to enact inclusion across all stages of community-based participatory research, including shared leadership, shared decision making, authentic engagement, co-learning, and ongoing monitoring and improvement of collaboration (please see www.aaspire.org for a list of publications that describe this community-based participatory research work).