Characterizing rural families’ experiences receiving pediatric surgical care: A qualitative study

Abstract

AbstractPurposeAccess to pediatric surgical care is influenced by multiple factors, including proximity to care and financial resources. There is limited understanding regarding the process by which rural children acquire surgical care. We qualitatively explored rural families’ experiences seeking surgical care for their children at a major children's hospital.MethodsParents or legal guardians ≥18 years of age with children who received general surgical care at a major children's hospital and who lived in rural areas were included. Operative logs from 2020 to 2021 and postoperative clinic visits were used to identify families. Semi‐structured interviews explored rural families’ experiences receiving surgical care. Interviews were inductively and deductively analyzed to create codes and identify thematic domains. Twelve interviews (with 15 individuals) were conducted before thematic saturation was reached.FindingsChildren were predominantly White (92%) and lived a median of 98.3 mi (interquartile range 49.4–147.0 mi) from the hospital. Four thematic domains were identified: (1) Accessing surgical care included difficulties with referral processes and travel/lodging burdens; (2) surgical care processes involved treatment details and provider/hospital expertise; (3) resources for navigating care encompassed families’ employment status, financial burden, and technology use; and (4) social support included family situations, emotions and stress, and coping with diagnoses.ConclusionsRural families experienced difficulties with obtaining referrals, challenges with travel and employment, and the benefits of technology use. These findings can be applied to the development of tools that can ease challenges faced by rural families whose children require surgical care.