Caregiver Well-Being and Pediatric Healthcare Utilization in Youth With Sickle Cell Disease: The Role of Caregiver and Child Factors.

INTRODUCTION

The current study examined the way in which caregiver and child factors relate to caregiver psychological variables and patterns of healthcare utilization for youth with sickle cell disease (SCD).

METHODS

Participants included 50 parent/patient dyads (n = 100 total participants) who were recruited from an outpatient pediatric SCD Clinic. Caregivers completed questionnaires to assess caregiver adverse childhood experiences (ACEs), recent emotional distress, and resilience, as well as caregiver/child sociodemographic and clinical factors. A chart review was conducted to assess pediatric healthcare utilization outcomes, and the Area Deprivation Index (ADI) assessed family socioeconomic disadvantage.

RESULTS

Results indicated that caregivers of youth with SCD and a comorbid condition reported higher levels of recent emotional distress than their counterparts. Additionally, higher no-show rates across all outpatient care were associated with younger caregiver age and higher levels of sociodemographic disadvantage amongst families of youth with SCD. Older youth were found to have more adherence concerns and SCD-related urgent services, and youth with severe SCD demonstrated higher rates of urgent services and SCD-related hospitalizations compared to their counterparts. Finally, higher levels of caregiver ACEs predicted lower rates of attendance in the SCD Clinic.

DISCUSSION: Child factors, such as comorbidity status, may affect the psychosocial well-being of caregivers of youth with SCD. Additionally, various caregiver and child factors may affect routine and urgent healthcare use, including caregiver/child age, SCD disease severity, sociodemographic disadvantage, and caregiver ACEs. Better understanding of these relationships may provide opportunities for improved care for youth with SCD and their families.