Authors:
Andrews J, Leonard H, Hammond GC, Girdler S, Rajapaksa R, Bathgate K, Downs J
Authors notes:
Disability and Rehabilitation.online:1-6
Keywords:
Community participation, disability, international classification of functioning, disability and health, reft syndrome
Abstract:
To describe the relationships between impairment and contextual factors and community participation for girls and women with Rett syndrome.
The mean age of the girls and women was 17.6 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.
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.