Co-designing with adults with acquired neurological disability in the community: a scoping review and thematic...

Background Co-design is gaining momentum in disability. However, there is limited research evidence to guide co-designing with people with acquired neurological disability. The aim of this scoping literature review was to understand when and how co-design is used with adults with acquired neurological disability, as well as the experience of participating in co-design. Methods Systematic searches were conducted in CINAHL, MEDLINE, PsycINFO, Scopus and Embase databases. The search was limited to qualitative studies or studies using mixed methods in which qualitative data could be extracted for thematic analysis. Results Of the 4200 articles retrieved, 45 were eligible for the review. Data extracted across the included studies showed variability in the definition and implementation of co-design, including recruitment, timing and the role of co-design contributors. Thematic analysis of the lived experience resulted in three themes: (1) a meaningful experience, (2) balancing group dynamics, and (3) an unfamiliar process. Conclusions Co-design with adults with acquired neurological disability is an emerging area of practice, valued by co-design contributors with disability, health professionals and researchers. Future work is needed to better define and operationalise co-design, with investment in the facilitator role to optimise involvement of people with disability.