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A Scoping Review of Photo-Based Approaches to Understand the Lived Experience of Children with Medical Complexity, Their Family Caregivers, and Clinicians

Nell E. Baumgarten, Danielle Faye Jonas , Jori Bogetz, Ellie Oslin, Elsa Ayala, Crystal Nogle, Ari Pollack, Ali Mendelson

9.2.2026

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Summary

This article reviews research on how photo-based methods (such as photovoice, photo-elicitation, and photo-narratives) are used to explore the experiences of children with medical complexity (CMC), their caregivers, and clinicians. The authors analyzed 25 studies published over the last 20 years. Findings show that photo-based approaches help participants communicate complex aspects of daily life and care experiences that may be difficult to express verbally. The review identifies nine themes across relational, navigational and emotional dimensions, highlighting issues such as dependency, advocacy, stigma, uncertainty, and caregiver exhaustion. Overall, these methods improve understanding and communication between families and healthcare providers.

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