Factors associated with social participation among children with fragile X syndrome
Maria G Gonzalez1, April D Summers1, Lisa D Wiggins1
1Division of Human Development and Disability, National Center on Birth Defects and Developmental Disabilities (NCBDDD), Centers for Disease Control and Prevention (CDC), Atlanta, GA, USA.
Insights
Social participation is common in children with fragile X syndrome (FXS), but intellectual disability and emotional dysregulation pose challenges. Improving adaptive programs and support services can enhance engagement for children with FXS.
Area of Science:
- Pediatric Health
- Neurodevelopmental Disorders
- Social Sciences
Background:
- Social participation is linked to improved quality of life in children with disabilities.
- Limited research exists on social participation specifically within the fragile X syndrome (FXS) population.
Purpose of the Study:
- To characterize social participation among children with FXS.
- To identify associations between social participation and demographic/clinical factors.
- To document caregiver-identified barriers to social participation.
Main Methods:
- Utilized data from the Fragile X Online Registry With Accessible Research Database (2011-2021).
- Included 830 children aged 5-17 years with FXS.
- Employed chi-square tests and modified Poisson regression to analyze participation and barriers.
Main Results:
- 81.7% of children with FXS participated in at least one social activity; physical activities were most common.
- Severe to profound intellectual disability and emotional dysregulation were associated with lower participation rates.
- Caregivers cited behavioral issues, time constraints, and lack of resources as primary barriers.
Conclusions:
- Findings highlight the need for targeted interventions to boost social engagement.
- Recommendations include expanding adaptive programs and staff training.
- Increased respite support services may also facilitate greater social participation.
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.
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