Adapting and Testing a Novel Method of Engagement in Research: Centering Autistic Perspectives in Behavioral Intervention Discussions
Drexel University
Summary
The Centering Autistic Perspectives for Behavioral Interventions Discussions (CAPBID) PCORI Science of Engagement Award will examine different community engagement approaches for bringing together autistic people, Applied Behavioral Analysis (ABA) providers, and other members of the autism community to advance a shared equitable dialogue around research priorities for ABA-related research. One of these approaches will be based on existing transformative and restorative justice methods and frameworks. This project also utilizes a community-driven participatory research approach that will center autistic leadership in all aspects of the project. The investigators hope that this research will pave the way for creating spaces where autistic people are heard in their experiences and can collaborate effectively with open-minded ABA providers about how to advance the next generation of care and research in the field. More broadly, the investigators aim to create engagement approaches that may be used to have conversations around critical and difficult issues faced by the autistic and autism communities, as well as other marginalized communities.
Description
Ensuring systematically marginalized populations have access to clinical care that is accessible and meaningful is a vital public health issue. However, many such communities have concerns about available supports and/or lack trust in researchers that study them, precluding advancement of the very comparative clinical effectiveness research (CER) that could address these needs. It is presently unknown what engagement approaches are best suited to bring patients and other stakeholders together to develop shared CER priorities. While frameworks exist for such engagement, no rigorous, comparative…