Factors Associated With Social Participation Among Children With Fragile X Syndrome.

Details

• Alternative Title:
  Disability and Health Journal, 2026, v. 19, no. 3: Factors Associated With Social Participation Among Children With Fragile X Syndrome.
• Journal Article:
  Disability and Health Journal
• Personal Author:
  Gonzalez, Maria G. ; Summers, April D. ; Wiggins, Lisa D. ; Schweizer, Marc A. ; Thompson-Paul, Angela M. ; Tinker, Sarah C.
• Description:
  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).
  
  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.
  
  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).
  
  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.
  
  Increasing adaptive program availability, activity staff training, and respite support services may improve social participation.
• Content Notes:
  Author manuscript
• Subjects:
  • Humans
  • Social Participation
  • Child
  • Fragile X Syndrome
  • Female
  • Male
  • Adolescent
  • Child, Preschool
  • Caregivers
  • Quality of Life
  More +
• Keywords:
  • Fragile X syndrome
  • Social participation
  • Developmental disabilities
• Source:
  Disability and Health Journal, 2026, v. 19, no. 3
• DOI:
  https://doi.org/10.1016/j.dhjo.2026.102069
• ISSN:
  1936-6574 ; 1876-7583
• Pubmed ID:
  41832059
• Pubmed Central ID:
  PMC13454921
• Document Type:
  Text
• Funding:
  CC999999/ImCDC/Intramural CDC HHSUnited States/
• Genre:
  Journal Article
• Pages in Document:
  102069 (20 pdf pages)
• Volume:
  19
• Issue:
  3
• Download URL:
  https://stacks.cdc.gov/view/cdc/260738/cdc_260738_DS1.pdf
• File Type:
  [PDF - 160.64 KB]
• Collection(s):
  CDC Public Access
• Main Document Checksum:
  urn:sha-512:c6381daae7c69490c287a080c0805d2cb48ff22239c3407868759b3eb1c557b12e392d6e5a67f912afffdfa297e2d06f908311671bedd98d91dc559df24d46e2