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Change over a 16 month period in the psychological well-being of mothers of girls and women with Rett syndrome
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Cianfaglione, Rina, Hastings, Richard P., Felce, David, Clarke, Angus and Kerr, Mike (2017) Change over a 16 month period in the psychological well-being of mothers of girls and women with Rett syndrome. Developmental Neurorehabilitation, 20 (5). pp. 261-265. doi:10.3109/17518423.2016.1142483 ISSN 1751-8423.
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Official URL: http://dx.doi.org/10.3109/17518423.2016.1142483
Abstract
Purpose: There is an emerging research literature on the experiences of family members of girls and women with Rett syndrome (RTT), but a lack of longitudinal data. Methods. Fifty mothers whose daughters had RTT were surveyed 16—17 months after an earlier cross-sectional study. Measures completed at both time points focused on maternal positive and negative psychological well-being and their daughters’ behavioural and emotional problems and RTT behavioural phenotype severity. Results: Maternal stress, anxiety and depression demonstrated at least moderate levels of stability. Maternal positive perceptions were also moderately stable over 16—17 months. Longitudinal analyses suggested that their daughters’ behavioural and emotional problems rather than RTT behavioural phenotype severity predicted later maternal well-being. Conclusion: Mothers with RTT daughters experience chronic stress (persisting over time) but also ongoing positive perceptions. Practitioners should recognise positive perceptions, and also consider targeted behavioural parent training to reduce behaviour problems in individuals with RTT.
Item Type: | Journal Article | ||||||||||
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Subjects: | B Philosophy. Psychology. Religion > BF Psychology R Medicine > RJ Pediatrics |
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Divisions: | Faculty of Social Sciences > Centre for Educational Development, Appraisal and Research (CEDAR) | ||||||||||
Library of Congress Subject Headings (LCSH): | Rett syndrome, Mothers of children with disabilities -- Longitudinal studies, Anxiety, Depression, Well-being | ||||||||||
Journal or Publication Title: | Developmental Neurorehabilitation | ||||||||||
Publisher: | Taylor & Francis | ||||||||||
ISSN: | 1751-8423 | ||||||||||
Official Date: | 2017 | ||||||||||
Dates: |
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Volume: | 20 | ||||||||||
Number: | 5 | ||||||||||
Page Range: | pp. 261-265 | ||||||||||
DOI: | 10.3109/17518423.2016.1142483 | ||||||||||
Status: | Peer Reviewed | ||||||||||
Publication Status: | Published | ||||||||||
Access rights to Published version: | Restricted or Subscription Access | ||||||||||
Date of first compliant deposit: | 16 February 2016 | ||||||||||
Date of first compliant Open Access: | 28 March 2017 | ||||||||||
Funder: | National Institute for Social Care and Health Research (Wales) (NISCHR) |
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