title: Community participation for girls and women living with Rett syndrome.
abstract: OBJECTIVE
  To describe the relationships between impairment and contextual factors and community participation for girls and women with Rett syndrome.
  
  
  METHODS
  Data was collected from a questionnaire completed in 2009 by families participating in the Australian Rett Syndrome Database (n = 214). Univariate and multivariate logistic regression were used to analyse relationships between impairment, personal and environmental factors and community participation.
  
  
  RESULTS
  The mean age of the girls and women was 17.6 years (SD = 7.95, range 3 to 34 years) with 114 (53.3%) girls still at school and 100 (46.7%) women post school. Frequency of activities was influenced by level of walking, community support and maternal education. For girls living at home, participation in activities was associated with greater functional independence and higher levels of maternal education. Participation in recreational (90.1%), physical/skill-based (67.6%) and/or social (70.3%) activities was commonly reported by families, while self-improvement (17.6%) activities were less reported. Younger girls participated in activities mainly with family members and older girls more frequently participated with carers.
  
  
  CONCLUSIONS
  Participation for girls and women with Rett syndrome could be enhanced by stronger local community supports. There are also needs for the implementation of policies that ensure resources are available and accessible by those communities most in need.
authors.affiliation: School of Exercise, Biomedical and Health Sciences, Edith Cowan University , Perth, Western Australia , Australia .
authors.forename: Jaimi
authors.initials: J
authors.lastname: Andrews
authors.forename: Helen
authors.initials: H
authors.lastname: Leonard
authors.forename: Geoffrey C
authors.initials: GC
authors.lastname: Hammond
authors.forename: Sonya
authors.initials: S
authors.lastname: Girdler
authors.forename: Ruwani
authors.initials: R
authors.lastname: Rajapaksa
authors.forename: Katherine
authors.initials: K
authors.lastname: Bathgate
authors.forename: Jenny
authors.initials: J
authors.lastname: Downs
mesh_terms: D000203:Activities of Daily Living; D000293:Adolescent; D000328:Adult; D001315:Australia; D002675:Child, Preschool; D003256:Community Participation / Q000523:psychology / Q000706:statistics & numerical data; D004522:Educational Status; D005190:Family / Q000523:psychology; D005192:Family Health; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D015518:Rett Syndrome / Q000523:psychology / Q000534:rehabilitation; D012944:Social Support; D012959:Socioeconomic Factors; D016138:Walking
keywords: Community participation; Disability and Health; International Classification of Functioning; Rett syndrome; disability