Purpose: To evaluate health-relatedquality of life(HRQoL), depression, anxiety and sleep in caregivers (mothers and fathers) of children with Dravet Syndrome (DS).
Methods: Mothers (n = 41) and fathers (n = 39) of 42 children with DS completed the Rand 36-Item Short Form Health Survey (SF-36), the Hospital Anxiety and Depression Scale(HADS), and the Insomnia Severity Index (ISI). Mothers' and fathers' SF-36 scores were compared with Swedish population values for males and females using t-tests. Differences in proportions of mothers vs. fathers classified as 'noncases' or 'possible/probable' cases of anxiety (HADS-A) and depression (HADS-D), respectively, were assessed with the chi-square test. Parents' SF-36, HADS symptom and ISI scores were compared using t-tests. Linear regression analysis was employed to explore factors associated with sleep and mental health.
Results: Mothers had significantly lower scores compared with population norms on seven of eight SF-36 domains whilst fathers had lower scores on five domains. Mothers had significantly lower scores than fathers on one (i.e. Role limitation - emotional) SF-36 domain. A larger proportion of mothers than fathers had 'possible/probable' anxiety (83 % vs 59 %; p = 0.018), but not depression (46 % vs. 46 %; p = 0.987). Mothers reported more symptoms of anxiety than fathers (p = 0.007) but there was no difference in depression (p = 0.399). Mothers (78 %) reported more sleep difficulties than fathers (67 %) but the difference was not significant (p = 0.254). Sleep difficulties were predicted by mental health difficulties and vice versa, in mothers and fathers (all p < 0.001). Increased child sleep difficulties were associated with increased maternal sleep difficulties (p = 0.003) but not paternal sleep difficulties.
Conclusion: Parents of children with DS have high levels of mental health and sleep difficulties and reduced HRQoL. Mothers experienced higher levels of anxiety, but not depression, than fathers. There is a need to screen parents of children for these difficulties and develop interventions to ameliorate the difficulties.
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