Curtin University Homepage
  • Library
  • Help
    • Admin

    espace - Curtin’s institutional repository

    JavaScript is disabled for your browser. Some features of this site may not work without it.
    View Item 
    • espace Home
    • espace
    • Curtin Research Publications
    • View Item
    • espace Home
    • espace
    • Curtin Research Publications
    • View Item

    Community Participation for Girls and Women Living with Rett Syndrome

    Access Status
    Fulltext not available
    Authors
    Andrews, J.
    Leonard, H.
    Hammond, G.
    Girdler, Sonya
    Rajapaksa, R.
    Bathgate, Katherine
    Downs, J.
    Date
    2013
    Type
    Journal Article
    
    Metadata
    Show full item record
    Citation
    Andrews, Jaimi and Leonard, Helen and Hammond, Geoffrey C. and Girdler, Sonya and Rajapaksa, Ruwani and Bathgate, Katherine and Downs, Jenny. 2014. Community Participation for Girls and Women Living with Rett Syndrome. Disability and Rehabilitation. 36 (11): pp. 894-899.
    Source Title
    Disability and Rehabilitation
    DOI
    10.3109/09638288.2013.813083
    ISSN
    0963-8288
    URI
    http://hdl.handle.net/20.500.11937/29826
    Collection
    • Curtin Research Publications
    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.CONCLUSION: 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.

    Related items

    Showing items related by title, author, creator and subject.

    • Initial assessment of the StepWatch Activity Monitor™ to measure walking activity in Rett syndrome
      Downs, Jennepher; Leonard, H.; Hill, Kylie (2012)
      Purpose: In girls and women with Rett syndrome, we assessed the accuracy of the StepWatch Activity Monitor™ and investigated relationships between daily step counts, gross motor skills and age. Method: Twelve subjects ...
    • Caring for a child with severe intellectual disability in China: The example of Rett syndrome
      Lim, Faye; Downs, Jennepher; Li, Jianghong; Bao, Xinhua; Leonard, Helen (2013)
      Purpose: Rett syndrome is one of several genetic disorders known to cause severe intellectual and physical disability, mostly in girls. Girls affected by Rett syndrome appear to develop normally in the first 6 months of ...
    • Change in Gross Motor Abilities of Girls and Women with Rett Syndrome Over a 3- to 4- Year Period
      Foley, K.; Downs, Jennepher; Bebbington, A.; Jacoby, P.; Girdler, S.; Kaufmann, W.; Leonard, H. (2011)
      Rett syndrome is a rare but severe neurological disorder typically associated with a mutation in the MECP2 gene. We describe change in gross motor function over 3 to 4 years for 70 subjects participating in the Australian ...
    Advanced search

    Browse

    Communities & CollectionsIssue DateAuthorTitleSubjectDocument TypeThis CollectionIssue DateAuthorTitleSubjectDocument Type

    My Account

    Admin

    Statistics

    Most Popular ItemsStatistics by CountryMost Popular Authors

    Follow Curtin

    • 
    • 
    • 
    • 
    • 

    CRICOS Provider Code: 00301JABN: 99 143 842 569TEQSA: PRV12158

    Copyright | Disclaimer | Privacy statement | Accessibility

    Curtin would like to pay respect to the Aboriginal and Torres Strait Islander members of our community by acknowledging the traditional owners of the land on which the Perth campus is located, the Whadjuk people of the Nyungar Nation; and on our Kalgoorlie campus, the Wongutha people of the North-Eastern Goldfields.