Psychological Health in Caregivers of Children With Craniofacial Microsomia: Exploring Factors Associated With Distress and Family Quality of Life

Objective To explore factors associated with caregiver psychological distress and family quality of life (QoL) in craniofacial microsomia (CFM). Design Online cross-sectional survey. Participants: Forty caregivers (38 mothers) of children with CFM. Outcome Measures: Pediatric Quality of Life Inventory (Family Impact Module), Perceived Stress Scale, Hospital Anxiety and Depression Scale, and PTSD Checklist. Results Most caregivers (75%) were in “borderline” or “concern” risk categories for QoL. Caregivers reported significantly more symptoms of anxiety, depression, stress, and PTSD than norms. Factors associated with caregiver distress and family QoL included the number of child CFM characteristics and prior surgeries, and caregivers’ healthcare satisfaction, life orientation, resilience, and relationship satisfaction. Conclusions This study represents a small, self-selected, clinically impacted group of caregivers. Yet, findings align with similar studies and highlight a subset of families in need of psychological support. The findings can be tentatively used to inform larger studies, screening practices, and intervention targets.