Comparing Parental Well-Being and Its Determinants Across Three Different Genetic Disorders Causing Intellectual Disability
© 2017, Springer Science+Business Media, LLC, part of Springer Nature. Using the Short Form 12 Health Survey this cross-sectional study examined parental well-being in caregivers of children with one of three genetic disorders associated with intellectual disability; Down syndrome, Rett syndrome and...
| Main Authors: | , , , , |
|---|---|
| Format: | Journal Article |
| Published: |
Springer New York LLC
2018
|
| Online Access: | http://hdl.handle.net/20.500.11937/71889 |
| _version_ | 1848762600865660928 |
|---|---|
| author | Mori, Y. Downs, Jennepher Wong, K. Heyworth, J. Leonard, H. |
| author_facet | Mori, Y. Downs, Jennepher Wong, K. Heyworth, J. Leonard, H. |
| author_sort | Mori, Y. |
| building | Curtin Institutional Repository |
| collection | Online Access |
| description | © 2017, Springer Science+Business Media, LLC, part of Springer Nature. Using the Short Form 12 Health Survey this cross-sectional study examined parental well-being in caregivers of children with one of three genetic disorders associated with intellectual disability; Down syndrome, Rett syndrome and the CDKL5 disorder. Data were sourced from the Western Australian Down Syndrome (n = 291), Australian Rett Syndrome (n = 187) and International CDKL5 Disorder (n = 168) Databases. Among 596 mothers (median age, years 43.7; 24.6–72.2), emotional well-being was poorer than general female populations across age groups. Multivariate linear regression identified the poorest well-being in parents of children with the CDKL5 disorder, a rare but severe and complex encephalopathy, and negative associations with increased clinical severity irrespective of diagnosis. These findings are important for those providing healthcare and social services for these populations. |
| first_indexed | 2025-11-14T10:50:09Z |
| format | Journal Article |
| id | curtin-20.500.11937-71889 |
| institution | Curtin University Malaysia |
| institution_category | Local University |
| last_indexed | 2025-11-14T10:50:09Z |
| publishDate | 2018 |
| publisher | Springer New York LLC |
| recordtype | eprints |
| repository_type | Digital Repository |
| spelling | curtin-20.500.11937-718892018-12-13T09:33:49Z Comparing Parental Well-Being and Its Determinants Across Three Different Genetic Disorders Causing Intellectual Disability Mori, Y. Downs, Jennepher Wong, K. Heyworth, J. Leonard, H. © 2017, Springer Science+Business Media, LLC, part of Springer Nature. Using the Short Form 12 Health Survey this cross-sectional study examined parental well-being in caregivers of children with one of three genetic disorders associated with intellectual disability; Down syndrome, Rett syndrome and the CDKL5 disorder. Data were sourced from the Western Australian Down Syndrome (n = 291), Australian Rett Syndrome (n = 187) and International CDKL5 Disorder (n = 168) Databases. Among 596 mothers (median age, years 43.7; 24.6–72.2), emotional well-being was poorer than general female populations across age groups. Multivariate linear regression identified the poorest well-being in parents of children with the CDKL5 disorder, a rare but severe and complex encephalopathy, and negative associations with increased clinical severity irrespective of diagnosis. These findings are important for those providing healthcare and social services for these populations. 2018 Journal Article http://hdl.handle.net/20.500.11937/71889 10.1007/s10803-017-3420-x Springer New York LLC restricted |
| spellingShingle | Mori, Y. Downs, Jennepher Wong, K. Heyworth, J. Leonard, H. Comparing Parental Well-Being and Its Determinants Across Three Different Genetic Disorders Causing Intellectual Disability |
| title | Comparing Parental Well-Being and Its Determinants Across Three Different Genetic Disorders Causing Intellectual Disability |
| title_full | Comparing Parental Well-Being and Its Determinants Across Three Different Genetic Disorders Causing Intellectual Disability |
| title_fullStr | Comparing Parental Well-Being and Its Determinants Across Three Different Genetic Disorders Causing Intellectual Disability |
| title_full_unstemmed | Comparing Parental Well-Being and Its Determinants Across Three Different Genetic Disorders Causing Intellectual Disability |
| title_short | Comparing Parental Well-Being and Its Determinants Across Three Different Genetic Disorders Causing Intellectual Disability |
| title_sort | comparing parental well-being and its determinants across three different genetic disorders causing intellectual disability |
| url | http://hdl.handle.net/20.500.11937/71889 |