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Urban caregiver experiences with pediatric surgical care: A qualitative study
Benjamin Close1, Haley Feltracco2, Shana Terai Lara1
1Department of Surgery, Medical College of Wisconsin, Milwaukee, WI.
Background:
Urban families, particularly those experiencing socioeconomic disadvantage, face persistent disparities in pediatric surgical care. While prior literature has focused primarily on clinical outcomes, less insight is available regarding how provider- and system-level processes shape family experiences across the surgical journey. This study aims to characterize challenges related to care navigation, communication, and institutional factors influencing the pediatric surgical experience for urban families.
Methods:
We conducted semistructured, in-depth interviews with 21 caregivers whose children underwent surgery at a high-volume children's hospital between 2020 and 2023. Eligibility was limited to residents of Milwaukee County. Interviews, conducted virtually, explored experiences during the preoperative, operative, and postoperative phases. Transcripts were independently coded and collaboratively reviewed by a multidisciplinary research team. Inductive thematic analysis was used to identify core themes shaping caregiver experiences.
Results:
All participants were female caregivers; most identified as African American and were insured through state-sponsored programs. Nearly half reported household incomes below $15,000. Surgical complexity ranged from routine procedures to urgent operations. Three domains emerged: (1) navigating the surgical care pathway, including under-recognized symptom severity, prognostic uncertainty, and procedural challenges; (2) communication and use of technology, marked by delays, unclear explanations, and mixed experiences with digital tools; and (3) perceptions of the health care system shaped by trust, perceived bias, and documentation accuracy.
Conclusion:
Challenges related to care navigation, communication gaps, and variability in trust significantly shape the pediatric surgical experience for socioeconomically disadvantaged urban families. Addressing provider- and system-level factors is critical to advancing equity and improving care quality.
