Spiritual Distress in Caregivers of Patients with Cleft and Craniofacial Anomalies—a Single-Center Cross-Sectional Study

Abstract

Purpose: Spiritual distress describes an “impaired ability to experience and integrate meaning and purpose,” frequently occurring when diagnoses cause significant life disruption. The diagnosis of a craniofacial anomaly and repeated surgical intervention generate significant disruption and stress for families. This study measured spiritual distress in caregivers of children presenting at a multidisciplinary craniofacial clinic. Methods: Caregivers of patients presenting to a multidisciplinary cleft and craniofacial clinic were surveyed. The primary outcome was caregiver spiritual distress, measured by the Functional Assessment of Chronic Illness Therapy—Spiritual Well-Being scale (FACIT-Sp 12). Caregivers also completed the PHQ-8 and GAD-7 to measure depression and anxiety. Covariates included caregiver health, financial strain, and religiosity measured by the Duke Religion Index. Logistic regression with cluster adjustment was used to control for demographic and clinical variables. Results: 149/191 caregivers completed the survey (response rate=78.0%). Median age was 33 (IQR 25-39), with the majority being female (76.7%). Most were white (86.7%), non-Latino (91.1%), and Christian (76.7%). Most patients were being seen for a cleft diagnosis (90.8%). Thirty percent of caregivers demonstrated spiritual distress on the FACIT-Sp 12. Depression was present in 16.1% and moderate to severe anxiety in 18.1%. Christianity was associated with lower odds of spiritual distress (OR 0.32, p=0.039). Both depression (OR 14.36, p=0.001) and anxiety (OR 3.81, p=0.006) were associated with higher odds of spiritual distress. Conclusions: Nearly one third of caregivers demonstrated spiritual distress, which was associated with mood disorders. Addressing caregiver stress and providing necessary resources is critical for effective team-based care.