Understanding the lived experience of caregivers of children with medical complexity through Photovoice

This Photovoice project focuses on the lived experience of children with complex medical needs and their families. The aims of the project were to empower families to share their story through photographs. Through these photos the project team hopes to illuminate both the joys and challenges for these families in hopes of advancing change and making a world that welcomes and works for their children.

From October 2023 to March 2024, twenty-nine caregivers documented their experiences and perspectives on caring for their child(ren) with complex medical needs. This booklet highlights a selection of their photos and stories. Some participants have chosen to remain anonymous.

This work is part of a larger effort at Dell Children’s Comprehensive Care Clinic that aims to transform the health care system to better serve children with complex medical needs and their families.

Acknowledgements

The authors thank Rosalba Calleros (Texas Parent to Parent), Ivy Goldstein (Maternal and Child Health/Title V, Texas Department of State Health Services) the Dell Med Health Policy Team, and the team at the Dell Children’s Comprehensive Care Clinic for their work and insights. The authors also thank the executive team of the Value Institute for Health and Care, Elizabeth Teisberg and Scott Wallace, for their support.

This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) as part of an award totaling $1,891,910.00 with zero percentage financed with non-governmental sources. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by HRSA, HHS, or the U.S. Government. For more information, please visit HRSA.gov.