Rural families that live far from their child’s cancer center face unique challenges, particularly lost work and missed family activities, because of long drives and inadequate emergency care at local hospitals, a small study has found.
Lead author Emily B. Walling, MD, of the University of Michigan, Ann Arbor, and her colleagues interviewed 18 caregivers with children who received treatment at St. Louis (Mo.) Children’s Hospital, an urban pediatric hospital. The caregivers lived in a rural area 2 or more hours’ driving distance from the hospital, and their children had received six or more treatments of chemotherapy and/or radiation at the cancer center. To be eligible, families had to have sought emergency care related to their child’s cancer diagnosis at least once in their local community. A total of 18 caregivers (12 mothers and 6 fathers) from 16 families were identified. The families answered questions focused on how the distance between home and hospital affected their child’s cancer treatment.
From the 18 interviews, investigators determined that top problems encountered by the rural families included poor emergent care at local hospitals, strain on family members because of extended travel time, and challenges in managing and coping with a pediatric diagnosis, according to the study published in the Journal of Oncology Practice.
In regards to emergency care, the families reported frustration with local emergency care providers who they felt did not take their concerns seriously. Parents also noted a lack of resources and training related to specialized care at local hospitals. Because of inadequacies at local hospitals, the caregivers reported delays in care, poor symptom management, incorrect procedures, inability to access central lines, and underappreciation of the child’s immunocompromised state, according to the study. The parents also reported that local hospital providers sometimes failed to follow the recommendations of oncology specialists at St. Louis Children’s Hospital and that other times there was redundant care between both health care centers.
Interviewees also described disruption to family members and guilt about missing important activities of other children because of long drives to the urban cancer center. Caregivers worried about missed school for children and separation from siblings. Families also reported financial burdens from missed work and increased costs associated with food, gas, and housing while away from home. In addition, inclement weather increased travel stress, as did treatment-related problems during the drive not easily managed in a vehicle.
Based on the interviews, investigators recommended steps to improve the care of rural pediatric cancer patients, including improved guidance to caregivers about unexpected trips to local hospitals, more outreach to local hospitals, and better medical visit coordination. If local hospitals are identified at diagnosis, communication between the local hospital and cancer center could be established early, study authors wrote. If deficiencies in care are discovered, local hospitals may be prompted to “stock materials or parents could be redirected to other hospitals at which they are routinely available,” authors suggested.
“This would foster collaboration between local physicians and specialists at the cancer-treating hospital, and thereby lower levels of frustration and increase parent’s trust of local providers,” authors wrote.
SOURCE: Walling EB et al. J Oncol Pract. 2019 Jan 31. doi: 10.1200/JOP.18.00115.