Refining Methods of Experience-Based Co-Design for Application in Aphasia and Cognitive-Communication Disability

Co-design of research and services alongside end users is increasingly required by funding bodies and governments. To enable a meaningful inclusion of people with communication disability, planning and modification are required, as standard co-design procedures involve extensive spoken and written language. Experience-based co-design (EBCD) is one co-design approach that is gaining popularity; however, there are few detailed reports to date on adapting EBCD for communication disability. This article outlines our modifications of EBCD to co-design a technology-enabled self-management platform (Communication Connect) for people living with poststroke aphasia and cognitive-communication disability from traumatic brain injury.

Participants included individuals with communication disabilities (n = 8), care partners (n = 3), and health professionals (n = 20) across three Australian states. Data collection involved video-recorded interviews, focus groups, and structured prioritization workshops. This study describes the first four stages of EBCD (project setup, two experience-gathering stages, and identifying priorities).

This article presents a detailed account of the practical decisions and modifications made throughout the EBCD process. Key adaptations are outlined, including the use of text-based video editing to efficiently create touchpoint films, nonlinear presentation of challenges to facilitate engagement, and visual aids to support prioritization and ranking. These modifications supported the meaningful participation of co-designers, including people with communication disability.

This method article contributes to the growing knowledge on adapting EBCD for communication disability, which may be of use to future EBCD projects and for improving the meaningful inclusion of people with communication disability in co-design research.