Factors associated with social participation among children with fragile X syndrome

BACKGROUND: Social participation may increase quality of life for children with disabilities. However, few studies have explored social participation among children with fragile X syndrome (FXS). OBJECTIVES: The objectives of this analysis were to describe social participation among children with FXS, associations with demographic and clinical characteristics, and caregiver-reported barriers to social participation. METHODS: Children with FXS aged 5-17 years were identified using data collected 2011-2021 in the Fragile X Online Registry With Accessible Research Database. Caregivers reported on types of social activities the child was involved in and specific barriers to social participation. Chi-square tests of independence were used to compare distributions by sex and modified Poisson regression was used to estimate unadjusted and adjusted prevalence ratios (aPRs) and 95% confidence intervals (CI). RESULTS: Among children with FXS (n = 830), 81.7% participated in at least one social activity; physical (65.8%) and work or volunteer activities (2.0%) were the most and least common. Children with severe to profound intellectual disability (ID; aPR = 0.57, CI = 0.43-0.77) and emotional dysregulation behaviors (aPR = 0.93, CI = 0.87-1.00) were less likely to participate in a social activity relative to children without these characteristics. Demographic and clinical differences were observed for social participation by activity type. Caregivers most often reported behavioral issues (72.2%), time constraints (64.4%), and lack of community resources (64.2%) as barriers to social participation. CONCLUSION: Increasing adaptive program availability, activity staff training, and respite support services may improve social participation.