Challenges Associated With Living Remotely From a Pediatric Cancer Center: A Qualitative Study

Abstract

PURPOSE: Pediatric patients with cancer who live in rural communities face disparate access to medical services compared with those in urban areas. Our objectives were to use qualitative methods to describe how living in a rural setting during receipt of treatment at an urban cancer center affects a patient’s clinical course and to identify feasible areas of intervention to enhance service to these families. MATERIALS AND METHODS: We conducted semistructured interviews of caregivers of pediatric patients with cancer who received treatment at an urban pediatric hospital in the Midwest. Questions focused on how distance between home residence and cancer-treating hospital affected cancer treatment. RESULTS: Eighteen caregiver interviews were conducted. Five multithemed domains were identified; two related to receipt of emergent care at local hospitals, one related to the impact that distance had on the family, and two related to managing and coping with a pediatric cancer diagnosis. CONCLUSION: Rural families of pediatric patients with cancer face unique challenges in addition to those previously identified for pediatric patients with cancer, most notably increased travel time to their cancer centers and increased time spent in community hospitals to receive emergent care. We recommend feasible steps to improve the care of rural children with cancer, including improved parental anticipatory guidance about unanticipated emergent visits to local hospitals, outreach to local hospitals, and medical visit coordination.