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

Abstract

Background and purpose: Spiritual distress describes an “impaired ability to experience and integrate meaning and purpose,” and frequently occurs when an illness or diagnosis results in significant disruptions in patients’ lives. The initial diagnosis of a cleft or craniofacial anomaly, as well as the recurrent need for surgical intervention, can cause significant upheaval and stress for family members. In an effort to provide more comprehensive care, we sought to measure spiritual distress in caregivers of children presenting for care at our multidisciplinary cleft and craniofacial clinic. Methods: Caregivers of patients presenting to the multidisciplinary cleft and craniofacial clinic were surveyed during either new or return visits between October 2022 and April 2023. Those able to read English were eligible for inclusion. Our primary outcome was caregiver spiritual distress, measured by the 12-item 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, respectively. Covariates included dimensions of religiosity as measured by the Duke Religion Index (DUREL), caregiver health, and financial strain. Clinical and demographic data were also collected. Logistic regression with cluster adjustment was used to control for demographic and clinical variables. Results: A total of 159/191 caregivers completed the survey, for a response rate of 83.2%. Median age was 33 (IQR 25-39), with the majority being female (76.7%). Most were white (86.7%) and non-Latino (91.1%). The majority identified as Christian (76.7%), with nearly 20% not endorsing any religion. Intrinsic religiosity as measured by the DUREL was high (cohort median score=12, maximum score=15). Only 50.3% reported education beyond high school. Most patients were being seen as return visits (79.3%) with a cleft diagnosis (90.8%). Only 50.1% of caregivers reported very good or excellent health, with 10.7% reporting fair to poor health. Over a quarter (26.4%) reported weekly or daily financial worry. Thirty percent of caregivers demonstrated spiritual distress on the FACIT-Sp 12. Depression was present in 15.5% and moderate to severe anxiety in 17.9%. Christianity was associated with lower odds of spiritual distress (OR 0.33, p=0.047). Both depression (OR 14.2, p=0.001) and anxiety (OR 4.1, p=0.004) were associated with higher odds of spiritual distress. Conclusions: Nearly a third of caregivers presenting with their children to our cleft and craniofacial clinic demonstrated spiritual distress, which was associated with other mental health diagnoses. Addressing family stress and equipping caregivers with necessary resources is critical for effective team-based care. Main objectives of presentation: Learners will understand the meaning and significance of spiritual distress in the setting of life-altering diagnoses such as cleft and craniofacial conditions. Learners will also be able to apply simple screening tools to assess caregiver health and provide resources that will equip those caregivers to better care for patients with cleft and craniofacial anomalies.