Caregiver Perspectives on School Participation Among Students With Craniofacial Microsomia

Abstract

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.

The psychosocial impact of microtia and ear reconstruction: A national data-linkage study

“…Children with microtia in this cohort achieved comparable school results to age matched controls which is a highly relevant finding in light of the potential effects of microtia on hearing, self-confidence and absence from school to attend outpatient appointments and surgical inpatient stays. It has been previously reported that patients with craniofacial microsomia may be disadvantaged in academic settings owing to restricted participation ( 37 ), however comparable academic attainment was achieved in Maths, Science and English in our cohort at 10–11 years of age. Further validation of this finding could be attained through an analysis of GCSE and A-level data to ascertain whether any latent effects on academic attainment manifest later in life.…”

Capturing and Operationalizing Participation in Pediatric Re/Habilitation Research Using Artificial Intelligence: A Scoping Review

“…Skewed and missing data in predictive models raise questions about their generalizability to the population and the degree they may reinforce existing inequalities in healthcare settings ( 54 ). Therefore, future research on this topic should consistently report on family socio-economic status and child and/or youth race and ethnicity as well as improve sampling strategies to better represent child or youth gender ( 55 ) and the range of diagnoses in children who experience unmet participation need ( 56 , 57 ).…”

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“…23,29,30 In an American sample (N = 20), 75% had received multidisciplinary team care and 45% participated in at least a year of speech, physical, and/or occupational therapies. 20 In studies tracking a multisite North American sample of children with CFM (N = 107-121), 60% to 79% received intervention services, [31][32][33] including speech therapy (58%) and physical therapy (36%). Although communication difficulties were reported by more than two-thirds of those with aural atresia (total N = 254), only about half participated in speech therapy.…”

“…18 A pair of papers examined caregiver reports of school and community activities participation. 31,46 Although there were few differences between caregivers of children with CFM and healthy peers who had a history of participating in intervention services, there was a pattern of less involvement in school and community activities compared to peers with no service history, including less participation in organized physical activities, trips, clubs, and spending time with peers informally. 31,46…”