OTSystematic ReviewOTJR : occupation, participation and health2026

Scoping Review of Co-Design in Mental Health Research: Essential Elements and Recommendations.

Helena Roennfeldt, Victoria Stewart, Marianne Wyder and 6 others

PMID 40922524

WHAT IT FOUND

Reports of co-design in mental health research use the name for quite different things.

The essentials that recur: share power, treat lived experience as expertise, protect time for relationships and safety. Funding cycles and academic hierarchies stand in the way.

Key findings

01The same kind of participatory work is called co-design, co-production, patient and public involvement, participatory action research or co-creation, and the terms are used inconsistently and sometimes interchangeably.

02Across the documents, the essentials that recur are sharing power between academics and people with lived experience so that lived experience counts as a form of expertise, plus deliberate work on relationships and communication, including slowing decisions down so quieter voices are heard.

03The barriers reported most often were academic hierarchies that repeat the power imbalances people with mental distress already live with, funding rules that require a lead researcher with formal academic qualifications, and time demands that are not built into workloads or funding.

STILL TO COME

How it was doneWhat they foundWhat it means for OTs

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What it does not show

No quality appraisal of the included documents was done, so a reader cannot tell stronger work from weaker, and the review's own statements about benefits rest on what those documents reported rather than on any checked comparison. The documents were too different to compare with each other directly, and descriptions of what co-design actually involved were often vague or used different words for the same thing. Most of the literature came from the United Kingdom and Australia, and only English-language full texts were included. The recommendations come from research teams reflecting on their own projects, not from tested comparisons of one approach against another. The research team itself mixed lived experience and traditional academics, which the authors describe as both a strength and a limitation.

Declared interests

The authors declared no conflicts of interest. The work was funded by a Metro South Research Support Scheme grant (RSS_2023_082), co-funded by the Metro South Study, Education and Research Trust Account and Griffith University Health Group, with Metro South Health named as the funder. The paper gives no other information about the funder's role.

The easy way to misread this

Do not read this as evidence that co-design works or that it improves research or care. None of the included documents was checked for quality, the projects were too different to compare, and the recommendations come from teams describing their own experiences rather than from tested comparisons. The authors themselves say researchers should not rely on a standardised approach to co-design.

Summarised by AI from the full paper, without a clinician reviewing it. Check it against the source before it changes what you do. Read it on PubMed →