Psychosocial Functioning of Children in a Craniofacial Support Group

Abstract

Objective: To describe psychosocial functioning before and after participation in support groups for pediatric patients with craniofacial diagnoses and their families. Design: Baseline and postgroup outcomes and comparison to test norms. Setting: Urban children’s hospital. Participants: Patients (N = 138) were 54% female, primarily Latino (83%), aged 7 to 18 years (mean = 10.4, standard deviation = 2.8), and had public insurance (72%). Patients had isolated cleft lip/palate (54%), craniofacial syndromes (19%), craniofacial microsomia/microtia (14%), or other diagnoses (12%). Caregivers (n = 138) were mostly mothers (80%). Intervention: Support groups focused on peer normalization, social skills, and coping for patients with craniofacial diagnoses. Main Outcome Measure: Selected scales of the Behavior Assessment System for Children–Second Edition completed by patients and caregivers (51% Spanish; 49% English). Results: While in the average range, caregivers reported significantly higher baseline clinical concerns and patients and caregivers reported lower positive scales compared to test norms. Postgroup, patients reported significantly lower social stress than peer norms. Caregivers reported higher postgroup clinical scales, but no differences from test norms in the positive scales. In comparing pre to postgroup means, all but one scale showed significant improvement. The largest effect sizes were for higher self-reported self-esteem (d = 0.49) and lower caregiver-reported depression (d = 0.54) in their children. Conclusions: Although greater clinical concerns were reported compared to test norms, baseline and postgroup functioning was in the average range. Patients and caregivers reported significantly improved psychosocial functioning following group participation, particularly for adaptive skills and self-esteem.