Using photovoice to engage underserved children with neurodevelopmental disorders and their caregivers in health research: a mixed methods systematic review.
Miriam Gonzalez, Paul Y Yoo, Samantha E Noyek and 7 others
PMID 40895427WHAT IT FOUND
Photovoice is a feasible research method for engaging children with neurodevelopmental disorders and their caregivers, but it requires significant adaptation.
Clinicians should expect to modify consent, group sizes, and discussion formats to accommodate communication and sensory needs, as standard protocols often fail.
Key findings
01Authors of the included studies reported that photovoice is practical and useful for helping children with neurodevelopmental disorders and their caregivers express their experiences and engage meaningfully in research, despite the need for adaptations.
02Standard photovoice protocols required substantial modification, including using simple language and pictures for consent, allowing individual or small group participation instead of large groups, and replacing structured questions like SHOWeD with open-ended prompts or child-led descriptions.
03The evidence base lacks diversity, with most studies focusing on white, male, verbal youth with autism or intellectual disabilities, and no studies involving immigrant, refugee, low-income, or racialized families.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs
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What it does not show
The review included only studies published in English or French, potentially missing relevant work in other languages. Most studies focused on autism and intellectual disabilities, limiting generalizability to other NDDs. Participant samples lacked diversity, with no studies including immigrant, refugee, low-income, or racialized families, and few non-verbal participants. The review did not assess the therapeutic efficacy of photovoice, only its feasibility as a research method. Many studies did not report on the specific impact of adaptations on data quality or participant experience.
Declared interests
The authors received funding from the Canadian Institutes of Health Research and the Azrieli Foundation. The funders had no role in the design, conduct, or reporting of the review.
The easy way to misread this
Do not assume photovoice is a ready-made clinical intervention or a standardized assessment tool. This review synthesizes its use as a research methodology, and the evidence shows it requires extensive, individualized adaptation to be feasible. Applying it without these modifications, especially with non-verbal or culturally diverse clients, may lead to exclusion or misinterpretation of data.