Increasing Participation through Online Focus Groups with Adults with Intellectual Disabilities

The aim of this study was to develop and describe methods on how to conduct virtual focus groups with adults with intellectual disability. Using a community-engaged research approach, adults with intellectual and developmental disabilities helped develop virtual focus group methods. We report on the implementation of these methods through an illustrative application of applying these adaptations to virtual focus groups with 13 adults with intellectual disability in a study assessing their perspectives on mental health therapy. This work resulted in several adaptations that can enhance inclusivity of focus group research to individuals with intellectual disability. Adaptions broadly included: involving guardians in consent as needed, providing additional time to build rapport through icebreakers, providing multiple presentations of information including clear language questions, visuals, and PowerPoint slides. We also included multiple ways of receiving input from participants (e.g., chat, verbal, communication with support person). We also identified ways to make further adaptations to focus group methods including rephrasing all focus group questions in multiple ways using concrete language, pausing after asking questions, repeating questions as needed, and allowing for multiple breaks. The ability to conduct virtual groups with adults with intellectual disability can greatly enhance the reach of focus group research and can improve external validity and generalizability of research. Individuals with intellectual disabilities have historically often been excluded from research that directly affects them and their priorities, values, and preferences have not been fully heard. This manuscript outlines how their voices can be elevated and heard in research within the context of virtual focus groups.