Measuring spiritual distress in adolescent patients with cleft lip and palate—a prospective study

Abstract

Introduction: Adolescents with cleft lip (CL) and palate (CP) can experience stigmatizing facial and speech differences. These may cause spiritual distress, an “impaired ability to experience and integrate meaning and purpose,” which occurs commonly in patients facing chronic disease and repeated interventions, like surgery. This study utilized a validated instrument to measure spiritual distress in these patients and compare spiritual distress between those with CL and those with CP only. Methods: Patients aged 14-21 presenting to a multidisciplinary cleft clinic were surveyed. The primary outcome was spiritual distress, measured by the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being scale (FACIT-Sp 12) with scores <36 indicating spiritual distress. Patients also completed the PHQ-8 and GAD-7. Covariates included diagnosis, sociodemographic variables, religion, organizational religious activity (ORA), non-organizational religious activity (NORA), and intrinsic religiosity (IR), as measured by the Duke University Religion Index (DUREL). Bivariate tests evaluated associations between spiritual distress and other variables. Results: 41 patients participated (response rate=87.2%). Mean age was 17.0 years (SD 1.9); 61% were female. Most were white (75.6%), non-Latino (87.8), and Christian (66.7%). Most patients presented with a cleft lip (85.3%), and most of the remaining presented with isolated cleft palate (12.2%). Fourteen patients (34.1%) exhibited spiritual distress. The mean FACIT-Sp 12 score was 37.5 (SD 6.8). Approximately half had symptoms of depression (48.8%) or anxiety (53.7%). Patients with spiritual distress tended to be older (p=0.02) and were more likely to have symptoms of anxiety (p=0.01) and depression (p=0.04). NORA (p=0.01) and IR scores (p=0.05) were lower for patients with distress. Conclusions: More than one third of patients demonstrated spiritual distress, which was associated with anxiety and lesser degrees of religious connectedness. A critical need exists to understand the impact of spiritual distress so that appropriate interventions can be incorporated in team-based care.