Participatory Research with People with Aphasia: Frameworks, Examples, and Implementation Guidance

Participatory research (PR) improves the meaningfulness and efficiency of research and reduces the research-to-practice gap, because it includes the lived experience of those who are affected by the research in the planning, execution, and dissemination of the research. Communication disabilities, like aphasia due to stroke, or communication differences impact the way in which meaningful research collaborations can take place. The purpose of this paper is to describe the ethics, challenges, and opportunities for involving people with aphasia as collaborators in research. We highlight specific examples of PR projects undertaken by community member teams composed of researchers, clinicians, people with aphasia, and their family members. We provide resources and recommend future research efforts and directions. PR on various topics may necessitate the involvement of individuals with communication disabilities and differences. This paper demonstrates that it is possible for individuals with communication disorders to participate, and for researchers to use effective techniques to ensure that participation is possible. When research is undertaken with advanced knowledge of the effort and techniques needed, meaningful participation can be achieved.