Background: Central to assisted decision making is accessible communication. Adults with intellectual disabilities (ID) can require a range of communication supports. While some are independent communicators benefiting from Easy Read information and simplified language, others rely on context and routine, requiring diverse supports to determine, and support them to express, their will and preference. However, there is a lack of explicit research on how we can best communicate with this group regarding research.
Aims: This research aims to to explore the issues relating to communication regarding research participation and consent among adults with ID who require specialist communication supports. Specific research questions include:
– What are the recommendations from speech and language therapists with expertise in supporting communication by and with adults with ID who require specialist communication supports?
– What are the practices that can support communication about research and the research consent process with adults with ID who require specialist communication supports?
Methods: This study adopts an action research design. Informed by the existing research, this exploratory applied study will include qualitative interviews with 2-3 speech and language therapists working in intellectual disability services and research, alongside an observation study of the process of communicating about research participation with 2-3 adults with ID requiring specialist communication supports. Interactions between a senior speech and language therapist and adults with ID will be structured around a communication task, with the student observing the content and outcomes of these interactions.
Contribution: Conducted in a service setting, this study will be informed by practice knowledge and is positioned to impact on practice in the applied setting. As an exploratory study it is also positioned to provide initial insight into this important topic, and hopefully guide further research on this topic.