Niisoja Torto

Through Their Eyes: Exploring the Lived Experiences of Pediatric Patients and their Caregivers through Photovoice

Niisoja Torto

Stanford School of Medicine

ntorto@stanford.edu

Freja Ekman

Stanford University

Katherine Hu

Stanford University

Olubunmi A. Fariyike

Stanford University

Catharine Bowman

Stanford University

Justin Yates

Stanford University

Syamantak Payra

Stanford University

Charbel Bou-Khalil

Stanford University

Ezra Yoseph

Stanford University

Lillie Reed

Stanford University

Samuel Rodriguez

Stanford Children's Hospital

Background: Pediatric patients and their families face complex challenges navigating illness and the healthcare system. These challenges influence quality of life, medical outcomes, and psychosocial well-being [1,2,3]. Photovoice, a community-based research method combining photography and storytelling, empowers participants and enhances understanding of their needs [4]. This study uses Photovoice to explore the experiences of pediatric patients and their caregivers to examine how illness and healthcare interactions shape their lived experiences.

Methods: Between July 2022 and April 2024, pediatric patients and adult caregivers were recruited from inpatient and outpatient departments at Lucile Packard Children’s Hospital in Palo Alto, California, in collaboration with the Child Life department. Participants documented their healthcare experiences by taking photos with a provided camera or personal device. After a documentation period of days to weeks, semi-structured interviews were conducted that focused on key photos and their significance. Interviews were analyzed using inductive thematic analysis.

Results: We interviewed 9 pediatric patients (ages 4-20 years) and 5 adult caregivers. Five themes emerged: Resilience and Mental Health; Environment; Playing and Being a Normal Kid; Joy, Gratitude, and Appreciating Small Things; and Life Before, Current, and Future. Among children, Joy, Gratitude, and Appreciating Small Things was the most common theme, with Environment and Resilience and Mental Health also frequently noted. For caregivers, all 5 themes were referenced by 100% of participants, with particular emphasis on Joy, Gratitude, and Appreciating Small Things, Life Before, Current, and Future, and Resilience and Mental Health.

Conclusion: The analysis highlights both shared and distinct perspectives between pediatric patients and caregivers. Children focused on immediate experiences and current circumstances, while parents reflected on broader responsibilities and long-term implications. Perspectives on hospital environments revealed differences—patients assigned symbolic meaning to physical objects, while parents focused on spatial and interpersonal dynamics. Both groups valued taking photos as reminders of strength, growth, and progress. Both groups also emphasized the value of play and normal routines as fun distractions for patients and evidence of healing for caregivers. Gratitude for both mundane objects and the support of loved ones was a common sentiment across almost all participants."

BIOGRAPHY

Niisoja Torto, Freja Ekman, Katherine Hu, Olubunmi A. Fariyike, Catharine Bowman, Justin Yates, Syamantak Payra, Charbel Bou-Khalil, Ezra Yoseph, Lillie Reed: Each of these authors is a graduate student at Stanford University. They are all Knight-Hennessy Scholars, a prestigious globally competitive scholarship program, and part of the "Through Their Eyes" Kheystone Project group aimed at empowering pediatric patients to tell their stories through creative means.

Samuel Rodriguez, MD: Dr. Sam Rodriguez is a native of New Jersey and practicing Pediatric Anesthesiologist at Stanford Children's Hospital. He is a founder and co-director of the Stanford CHARIOT Program which creates and studies innovative approaches to treating pediatric pain and stress through technology. The CHARIOT Program has positively impacted thousands of children around the world and has grown to include emerging technologies like virtual reality, augmented reality, and interactive video games. Dr. Rodriguez is also highly involved in medical humanities education at Stanford Medical School and teaches courses at the undergraduate and graduate levels on how studying art can make better physicians."