Reflections in focus: a qualitative Photovoice-informed study on pediatric patient and caregiver hospital experiences

Pediatric patients and caregivers face numerous challenges throughout their healthcare journey, often experiencing feelings of lost agency and lost voice. Photovoice, a participatory methodology combining photography with storytelling, empowers participants to share their experiences from their own perspective. However, its use in pediatric hospitalizations has been limited. Using Photovoice-informed methods, this study examines how pediatric patients and caregivers experience illness and navigate the healthcare system, helping identify opportunities to improve care. This study was conducted at Lucile Packard Children’s Hospital between July 2022 and April 2024. Pediatric patients and adult caregivers were recruited from inpatient and hospital-based outpatient settings through the Child Life department. Participants captured photographs of their hospital experiences using personal or study-provided cameras. Semi-structured interviews were conducted with participants to explore the meaning behind their photographs. Team-based inductive thematic analysis of the interviews was then conducted to synthesize care recommendations. Eight pediatric patients and six adult caregivers participated. Five themes emerged: (1) life before vs. currently vs. after; (2) environment; (3) playing and being a normal kid; (4) joy, gratitude, and appreciating small things; and (5) resilience and mental health. Patients and caregivers described distinct yet complementary perspectives. Children focused primarily on immediate experiences and processing current circumstances, whereas caregivers emphasized broader responsibilities and long-term implications. Participants’ interactions with the hospital environment particularly highlighted these differences. Patients found symbolic meaning in physical objects, while caregivers focused on interpersonal dynamics. Both groups valued the moments depicted in their photos as reminders of strength and progress, though caregivers noted the emotional complexity of certain images representing both suffering and hope. While both groups emphasized the importance of play and normal routines, patients viewed these as enjoyable distractions while caregivers saw them as evidence of healing. Despite these differences, gratitude for ordinary objects and interpersonal support emerged as universal sentiments. This study highlights the unique experiences of pediatric patients and adult caregivers in navigating illness and prolonged hospitalization. Our findings emphasize the importance of Photovoice methodology in capturing the nuance of the patient and caregiver experiences as well as further opportunities to improve pediatric care.