Date Presented 03/28/20
Students with CFM were found to have more restricted school participation, as denoted by lower frequency and level of involvement in school occupations and higher rates of parent dissatisfaction with their child’s school participation, when compared to nonaffected peers who do not receive health, education, and rehabilitation services. These results show an unmet need for school-based and participation-focused OT for students with CFM.
Primary Author and Speaker: Vera Kaelin
Additional Authors and Speakers: Mary Khetani
Contributing Authors: Wallace Erin, Martha Werler, Brent Collett, Janine Rosenberg
PURPOSE: Children’s participation in occupations is a priority outcome of occupational therapy and a key indicator of children’s inclusion in an educational context (United Nations, 2016). Students with craniofacial microsomia (CFM) typically receive rehabilitation services, which occasionally includes occupational therapy. However, recent evidence indicates functional need warranting further study (Khetani, Collett, Speltz, & Werler, 2013; Wallace, Collett, Heike, Werler, & Speltz, 2018). To address this need, this study aims to examine case-control differences in school participation and caregiver perceptions of environmental support for school participation among students with CFM as compared to two control groups of students without CFM who differed in their use of health, education, and rehabilitation services.
DESIGN: This study involved secondary analyses of a subset of data (n = 397) from a longitudinal cohort study. Children with CFM and their families were initially recruited from craniofacial specialty clinics when children were less than 36 months of age and were diagnosed with CFM. Children without CFM were recruited through their pediatrician or pediatric practices and were eligible if no known birth defect was present, if they were not adopted, and when they were within two months of cases age at the time of recruitment. For this study, data were collected during the second phase of follow-up with students and families who enrolled.
METHOD: After completing a demographic questionnaire, caregivers were administered the Participation and Environment Measure – Children and Youth Version (PEM-CY; Coster, Law, & Bedell, 2010). Multiple linear and Poisson regressions and Wilcoxon Mann-Whitney tests were used to estimate differences in school participation and environmental support for school participation between students with CFM and controls. Logistic regressions were used to explore item-level group differences in change desired across school occupations.
RESULTS: Significant group differences were found in school participation frequency (ES = -0.37; 95% CI = -0.63, -0.11; p = 0.006), level of involvement (r = -0.14; p = 0.029) and desired change, with students with CFM exhibiting greater participation restriction as compared to students without CFM who do not receive services (p = 0.001). Item-level comparisons revealed significantly higher desire for change in three out of five school occupations for students with CFM as compared to their non-affected peers who do not receive services: field trips and school events (OR = 1.78; 95%CI = 1.02, 3.11; p = 0.041); getting together with peers outside of class (OR = 2.41; 95%CI = 1.36, 4.28; p=0.003); and special roles at school (OR = 1.83; 95%CI = 1.11, 3.00; p = 0.017). In addition, participation in classroom learning trended towards statistical significance (OR = 1.72; 95%CI = 0.98, 3.00; p = 0.057). There were no statistically significant differences in caregiver perceptions of environmental support for school participation and between students with and without CFM who receive services.
CONCLUSION: Results indicate that students with CFM have more restricted school participation, as denoted by lower frequency and level of involvement in school occupations. These differences in the student’s current school participation are of concern to families of students with CFM who display higher rates of dissatisfaction with the child’s school participation, when compared to their non-affected peers who do not receive services. Our findings provide a critical first step to identifying clinically relevant needs among students with CFM that warrant further investigation to drive the design of participation-focused intervention.
References
Coster, W., Law, M., & Bedell, G. (2010). Participation and Environment Measure - Children and Youth Version. Boston, MA: Boston University.
Khetani, M. A., Collett, B. R., Speltz, M. L., & Werler, M. M. (2013). Health-related quality of life in children with hemifacial microsomia. Journal of Developmental & Behavioral Pediatrics, 34(9), 661–668. https://doi.org/10.1097/DBP.0000000000000006
United Nations. (2016). Goal 4: quality education: why it matters. Retrieved from https://www.un.org/sustainabledevelopment/wp-content/uploads/2018/09/Goal-4.pdf
Wallace, E. R., Collett, B. R., Heike, C. L., Werler, M. M., & Speltz, M. L. (2018). Behavioral-social adjustment of adolescents with craniofacial microsomia. Cleft Palate-Craniofacial Journal, 55(5), 664–675. https://doi.org/10.1177/1055665617750488
