Community Participation for Girls and Women Living with Rett Syndrome
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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.
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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 ...
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 ...
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 ...