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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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
Subjects:	B Philosophy. Psychology. Religion > BF Psychology R Medicine > RJ Pediatrics
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:	Date Event 2017 Published 28 March 2016 Available 12 January 2016 Accepted 16 September 2015 Submitted
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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