Spiritual distress describes an “impaired ability to experience and integrate meaning and purpose,” frequently occurring after receipt of a major diagnosis. We measured spiritual distress in caregivers of children presenting to a multidisciplinary cleft and craniofacial clinic, hypothesizing that a significant percentage of caregivers would demonstrate spiritual distress.
Design
Caregivers were surveyed utilizing the Functional Assessment of Chronic Illness Therapy—Spiritual Well-Being scale, non-illness version (FACIT-Sp 12), the eight-item Patient Health Questionnaire depression scale (PHQ-8) and the seven-item General Anxiety Disorder scale (GAD-7), as well as questions evaluating caregiver health, financial strain, and religiosity measured by the Duke Religion Index (DUREL). Logistic regression with cluster adjustment was used to control for demographic and clinical variables.
Setting
A multidisciplinary cleft and craniofacial clinic.
Patients, Participants
All caregivers able to read English were surveyed. 149 of 191 completed the survey (response rate = 78.0%).
Main Outcome Measure(s)
Caregiver spiritual distress, as measured by the FACIT-Sp 12, non-illness version.
Results
The median age of caregivers was 33 (interquartile range 25-39). Most were female (76.7%), white (86.7%), non-Latino (91.1%), and Christian (76.7%). Most patients were seen for a cleft diagnosis (90.8%). Thirty percent of caregivers demonstrated spiritual distress. Depression was present in 16.1% and moderate to severe anxiety in 18.1%. On adjusted analysis, Christianity was associated with lower odds of spiritual distress (OR 0.32, p = .039). Additionally, both depression (OR 14.36, p = .001) and anxiety (OR 3.81, p = .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 spiritual stress and providing necessary resources is critical for effective team-based care.
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