Including people with intellectual and other cognitive disabilities in research and evaluation teams: A scoping review of the empirical knowledge base

Abstract

We conducted a rapid scoping review of empirical studies to identify how persons with intellectual and other cognitive disabilities have been engaged as active members of research and evaluation teams. We conducted a literature search using a systematic method that accessed peer reviewed studies in relevant library databases and all major evaluation journals. The search resulted in 6,624 potential articles, of which 32 met the inclusion criteria for this study. The findings address three categories of interest: 1) methodological underpinnings and practical justifications for using inclusive approaches, 2) different inclusion processes, and 3) reflections by researchers with and without intellectual and other cognitive disabilities. Findings provide conceptual and practical insights for researchers and evaluators when designing inclusive methods involving persons with intellectual and other cognitive disabilities. Gaps in inclusive research and evaluation are discussed and suggestions for future research are proposed.

Exploring the complex cognitive, affective and behavioural processes of individuals with intellectual disabilities in financially abusive situations

“…Including persons with intellectual disabilities in research has shown to enhance the validity of research, limit potential biases (Chouinard & Cousins, 2009;Frankena et al, 2015), and they can make invaluable contributions regarding their lived experiences to various stages of research processes (Di Lorito et al, 2018). Nonetheless, the results of a scoping review revealed that that there is no study where individuals with intellectual disabilities were involved in all phases of research (Ghaderi et al, 2023). Furthermore, there is a notable inconsistency in the titles and roles assigned to persons with intellectual disabilities (Ghaderi et al, 2023).…”

“…Nonetheless, the results of a scoping review revealed that that there is no study where individuals with intellectual disabilities were involved in all phases of research (Ghaderi et al, 2023). Furthermore, there is a notable inconsistency in the titles and roles assigned to persons with intellectual disabilities (Ghaderi et al, 2023). For instance, in studies in which persons with intellectual disabilities played a role as an 'advisor', they provided feedback and guidance on the content of research tools and materials or advised on different research processes including recruitment and data analysis (Hughes et al, 2020;Johnson et al, 2014;Puyalto et al, 2016).…”

“Will I Be Celebrated at the End of This Training?” Inclusive Research in Kenya

“…Inclusive research teams experience challenges in recruiting and training RAs with intellectual disabilities and receiving approval from ethics committees to include them in research projects (Ghaderi et al 2023;McDonald and Kidney 2012). The U.S. IRB considered people with intellectual disabilities a "vulnerable population", and additional approval measures and caution were required to avoid coercion and ensure the voluntary participation of the RAs.…”

Self-Advocacy in Inclusive Research

“…A large number of different terms are being used in the field to refer to individuals with and without disabilities who are involved in inclusive research, such as 'academic researcher', 'university researcher', 'inclusive researcher, 'co-researcher', etc. Sometimes these terms are used interchangeably (Ghaderi et al 2023). In this article, we use the term 'inclusive researchers' to refer to all individuals involved in inclusive research.…”

“…Inclusive researchers continue to raise questions about the process of inclusive research and call for critical discussions on how inclusion is practiced throughout the various stages of inclusive research to establish a clear framework of best practices. These discussions are complicated by the fact that most articles do not include reasons for why people with intellectual disabilities are excluded in certain stages of the research and lack reflection on how inclusion actually took place within the research (Ghaderi et al 2023). Inclusive research teams should prioritize documenting how they work together (as we have included in the introduction), and discuss what challenges they encounter, so the field can develop this suggested framework of best practices.…”