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’ 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