Caregiver Perspectives on School Participation Among Students With Craniofacial Microsomia

Importance: Knowledge of unmet school participation needs for students with craniofacial microsomia (CFM) can inform decisions regarding intervention support. Objective: To compare students with and without CFM on school participation (i.e., frequency, involvement, desire for participation to change) and caregivers’ perceptions of environmental support for participation in occupations. Design: Cross-sectional design using secondary analyses of a subset of data. Setting: Multisite cohort study. Participants: Caregivers of students with CFM (n = 120) and of students without CFM (n = 315), stratified by history of education- and health-related service use. Outcomes and Measures: School participation and environmental support, obtained with the Participation and Environment Measure–Children and Youth. Results: Significant group differences were found in frequency of school participation (effect size [ES] = −0.38, 95% confidence interval [−0.64, −0.12], p = .005), level of involvement (ES = −0.14, p = .029), and desired change (p = .001), with students with CFM exhibiting greater participation restriction than students without CFM and no history of service use. No statistically significant group differences were found in environmental support for participation in the school setting. Item-level findings showed statistically significant higher desire for participation to change in three of five school occupations (odds ratio = 1.77–2.39, p = .003–.045) for students with CFM compared with students without CFM and no history of service use. Conclusions and Relevance: The results suggest that students with CFM experience restriction in participation at school. What This Article Adds: Students with CFM may benefit from targeted school-based interventions to optimize their inclusion.