Participatory Research with Persons who Experience Mental Illness in Occupational Therapy: A Scoping Review.
Elham Javadizadeh, Abram Oudshoorn, Lori Letts and 3 others
PMID 38240309WHAT IT FOUND
Most occupational therapy studies involving people with mental illness skip key research stages like co-designing tools or deciding future directions.
Only 12% involved participants in planning next steps. This gap means services may still miss what patients actually value, despite claims of collaboration.
Key findings
01Only 41.1% of studies had participants collaboratively decide the focus, and just 11.7% involved them in identifying future research directions.
02Eight studies found a mismatch between what mental health consumers prioritize and what occupational therapy services focus on.
03Participants reported challenges including fear of judgment, technical difficulties with methods like photovoice, and limited influence on scientific decisions.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
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What it does not show
Scoping reviews do not assess the quality of the included studies, so weak evidence is treated the same as strong evidence. Most included studies did not report detailed demographics like race or disability status, limiting understanding of who was involved. The level of participation was judged only by what authors wrote in their papers, which may be incomplete due to word limits. The primary data analyst was a single person without lived experience of mental illness, which may have influenced interpretation. Inter-rater agreement for screening studies was moderate, suggesting some studies might have been included or excluded inconsistently.
Declared interests
The authors received no financial support for this research.
The easy way to misread this
Do not assume that calling a study 'participatory' means clients had real power. Most studies in this review did not involve clients in key decisions like analyzing data or planning next steps, so collaboration was often superficial.