Article

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.

Langue : ANGLAIS