Screening for Caregiver Stress in an Urban Medical Home for Children with Medical Complexity: Results of a Pilot Study

Abstract

Background: Children with medical complexity (CMC), a subset of children with special healthcare needs, have chronic conditions affecting multiple organ systems, require medical technology, and account for a significant share of pediatric healthcare spending despite comprising only 1% of the population. Their families experience unique stressors, including financial strain and high rates of workforce attrition, suggesting medical inequity is an independent risk factor for health inequity. The role of universal caregiver stress screening using a validated tool within the outpatient primary care medical home for CMC youth has not been explored in the literature. Methods: Caregivers of all patients in the Complex Care Program (CCP) within a large academic pediatric primary care Medical Home-certified practice at the Children’s National Hospital were screened for caregiver stress during routine primary care appointments using the University of Washington Caregiver Stress Scale 8-Item Short Form V. 2.0 (UW-CSS). Elevated scores prompted referrals to the CCP psychosocial team, and composite scores were recorded in the electronic medical record. Demographics, medical diagnoses, and technology support status were extracted from the medical chart. The childhood opportunity index (COI) was calculated as a proxy for socioeconomic position. Results: Screening for caregiver stress in our medical home for CMC was feasible and yielded unexpected results. We found no difference in levels of stress among caregivers based on the COI. This finding highlights the importance of universal rather than targeted screening. Future directions include measuring the impact of targeted interventions for families who initially screen positive via longitudinal follow-up. Conclusions: Screening for caregiver stress in a primary care medical home for CMC is feasible. As no single variable alone was a predictor of high caregiver stress, universal screening seems to be the most appropriate strategy to capture all families at the highest risk.