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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

Published Date: 9.2.2026

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Theme: Relationships and community

Sub-theme: Family relationships

Children with disabilities Photo-based Scoping review

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This publication / resource is hosted on a publicly available external link. If the full text is not publicly accessible, summary points are included and a contact method for the author(s) is provided, where available.

The summary information presented is based on content submitted by an author or other user
, along with publicly available information about the publication / resource added by the Carer Knowledge Exchange team.

All content is reviewed, edited and approved by the Carer Knowledge Exchange team, in line with our Submission Guidelines.


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Theme: Relationships and community

Sub-theme: Family relationships

View Publication Children with disabilities Photo-based Scoping review

Verification Statement

This publication / resource is hosted on a publicly available external link. If the full text is not publicly accessible, summary points are included and a contact method for the author(s) is provided, where available.

The summary information presented is based on content submitted by an author or other user
, along with publicly available information about the publication / resource added by the Carer Knowledge Exchange team.

All content is reviewed, edited and approved by the Carer Knowledge Exchange team, in line with our Submission Guidelines.


To report an issue or request a change, please complete our Feedback Form.

 

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

Published Date: 9.2.2026

  • Author/ Authors

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

  • Suggested citation (APA 7th edition)

    Baumgarten, N. E., Jonas, D. F., Oslin, E., Ayala, E., Nogle, C., Pollack, A., Mendelson, A., & Bogetz, J. (2026). A Scoping Review of Photo-Based Approaches to Understand the Lived Experience of Children with Medical Complexity, Their Family Caregivers, and Clinicians. Journal of Palliative Medicine, 10966218251413034. https://doi.org/10.1177/10966218251413034

Long 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.

    Key Messages for Carers


  • For carers of children with medical complexity, the study highlights the importance of recognising and communicating the everyday realities of caregiving, including emotional strain, advocacy responsibilities, and navigating complex healthcare systems. Visual storytelling methods such as photographs can help carers articulate experiences that are difficult to express in words and make their perspectives more visible to professionals and policymakers. Engaging in such approaches can strengthen communication with clinicians, validate caregiving experiences and build supportive networks. The findings emphasise that carers’ knowledge and lived experiences are essential for improving care practices and shaping more responsive support systems.

  • Key Messages for Policy Makers


  • Policymakers should recognise that children with medical complexity (CMC) and their families face interconnected emotional, relational and system-navigation challenges that are often overlooked in traditional research and service design. Photo-based participatory methods reveal lived realities such as caregiver burden, fragmented services and advocacy pressures that standard surveys may miss. Policies should therefore prioritize family-centred care, better coordination across health and social services and mechanisms that actively incorporate caregiver and patient voices in decision-making. Supporting participatory research approaches can lead to more responsive policies and improve equity, care quality, and wellbeing for families managing complex care needs.

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The Carer Knowledge Exchange is led by Carers NSW and proudly funded by the NSW Government. It was established as a partnership between Carers NSW and the Institute for Public Policy and Governance (IPPG) at the University of Technology Sydney from 2021-2024. We acknowledge Aboriginal and Torres Strait Islander peoples as the First Australians and Traditional Custodians of the lands where we live, learn and work.