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Co-designing with Adults with Acquired Neurological Disability in the Community: A Scoping Review and Thematic Synthesis

Kate D'Cruz , Rebecca Rothman , Stacey Oliver , Stephanie Antonopoulos, Jacinta Douglas, Di Winkler

Abstract

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 4,200 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.

IB25027  Accepted 10 August 2025

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