Community Participation for Girls and Women Living with Rett Syndrome
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). Univa...
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| Format: | Journal Article |
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Informa Healthcare
2013
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| Online Access: | http://hdl.handle.net/20.500.11937/29826 |
| _version_ | 1848752911059779584 |
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| author | Andrews, J. Leonard, H. Hammond, G. Girdler, Sonya Rajapaksa, R. Bathgate, Katherine Downs, J. |
| author_facet | Andrews, J. Leonard, H. Hammond, G. Girdler, Sonya Rajapaksa, R. Bathgate, Katherine Downs, J. |
| author_sort | Andrews, J. |
| building | Curtin Institutional Repository |
| collection | Online Access |
| description | 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. |
| first_indexed | 2025-11-14T08:16:08Z |
| format | Journal Article |
| id | curtin-20.500.11937-29826 |
| institution | Curtin University Malaysia |
| institution_category | Local University |
| last_indexed | 2025-11-14T08:16:08Z |
| publishDate | 2013 |
| publisher | Informa Healthcare |
| recordtype | eprints |
| repository_type | Digital Repository |
| spelling | curtin-20.500.11937-298262017-09-13T16:07:58Z Community Participation for Girls and Women Living with Rett Syndrome Andrews, J. Leonard, H. Hammond, G. Girdler, Sonya Rajapaksa, R. Bathgate, Katherine Downs, J. International Classification of Functioning Rett syndrome disability and health disability Community participation 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. 2013 Journal Article http://hdl.handle.net/20.500.11937/29826 10.3109/09638288.2013.813083 Informa Healthcare restricted |
| spellingShingle | International Classification of Functioning Rett syndrome disability and health disability Community participation Andrews, J. Leonard, H. Hammond, G. Girdler, Sonya Rajapaksa, R. Bathgate, Katherine Downs, J. Community Participation for Girls and Women Living with Rett Syndrome |
| title | Community Participation for Girls and Women Living with Rett Syndrome |
| title_full | Community Participation for Girls and Women Living with Rett Syndrome |
| title_fullStr | Community Participation for Girls and Women Living with Rett Syndrome |
| title_full_unstemmed | Community Participation for Girls and Women Living with Rett Syndrome |
| title_short | Community Participation for Girls and Women Living with Rett Syndrome |
| title_sort | community participation for girls and women living with rett syndrome |
| topic | International Classification of Functioning Rett syndrome disability and health disability Community participation |
| url | http://hdl.handle.net/20.500.11937/29826 |