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Change over a 16-month period in the psychological well-being of mothers of girls and women with Rett syndrome

Change over a 16-month period in the psychological well-being of mothers of girls and women with Rett syndrome
Change over a 16-month period in the psychological well-being of mothers of girls and women with Rett syndrome
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’ behavioral and emotional problems and RTT behavioral 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’ behavioral and emotional problems rather than RTT behavioral 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 recognize positive perceptions and also consider targeted behavioral parent training to reduce behavior problems in individuals with RTT.
Developmental behavior checklist, family research, longitudinal design, maternal depression, Rett Syndrome Behaviour Questionnaire
1751-8423
261-265
Cianfaglione, Rina
bf9b4507-4a79-4f72-b7e2-7244b9dea9ef
Hastings, Richard P.
9eed39c0-206c-4027-8b29-e7c78bfb27b7
Felce, David
b4cdedfb-100b-4c53-b01c-363606db0d19
Clarke, Angus
934116e6-81eb-4f1f-ab9a-ef2b80b933cf
Kerr, Michael P.
d86f91d7-842f-4a95-b056-0923db4b1719
Cianfaglione, Rina
bf9b4507-4a79-4f72-b7e2-7244b9dea9ef
Hastings, Richard P.
9eed39c0-206c-4027-8b29-e7c78bfb27b7
Felce, David
b4cdedfb-100b-4c53-b01c-363606db0d19
Clarke, Angus
934116e6-81eb-4f1f-ab9a-ef2b80b933cf
Kerr, Michael P.
d86f91d7-842f-4a95-b056-0923db4b1719

Cianfaglione, Rina, Hastings, Richard P., Felce, David, Clarke, Angus and Kerr, Michael P. (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), 261-265. (doi:10.3109/17518423.2016.1142483).

Record type: Article

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’ behavioral and emotional problems and RTT behavioral 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’ behavioral and emotional problems rather than RTT behavioral 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 recognize positive perceptions and also consider targeted behavioral parent training to reduce behavior problems in individuals with RTT.

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More information

Accepted/In Press date: 12 January 2016
e-pub ahead of print date: 28 March 2016
Published date: 2017
Keywords: Developmental behavior checklist, family research, longitudinal design, maternal depression, Rett Syndrome Behaviour Questionnaire

Identifiers

Local EPrints ID: 420284
URI: https://eprints.soton.ac.uk/id/eprint/420284
ISSN: 1751-8423
PURE UUID: 08ff04d3-242a-46d1-9d0f-de55af0600c0
ORCID for Rina Cianfaglione: ORCID iD orcid.org/0000-0001-8739-0598

Catalogue record

Date deposited: 03 May 2018 16:30
Last modified: 20 Jul 2019 00:27

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