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Sleep Quality Amongst Family Caregivers of Children with Duchenne Muscular Dystrophy
Muhammed Mustafa Uzan1, Gamze Sarikaya Uzan2, Gizem Doğan3
1Ministry of Health Health Sciences University Izmir Tepecik Education and Research Hospital, Department of Family Medicine, İzmir, Turkey, Konak.
Background:
Duchenne and Becker muscular dystrophies (DMD/BMD) are progressive neuromuscular disorders typically presenting in childhood. Caring for children with these conditions imposes a substantial emotional and physical burden on parents. This study aimed to compare sleep quality and daytime sleepiness between caregivers of children with DMD who were followed at a specialized pediatric neuromuscular center and caregivers of healthy peers.
Methods:
The study included mothers of patients diagnosed with DMD who had no known psychiatric or organic disorders. Participants were recruited from a single neuromuscular center between March 2025 and May 2025. Sleep quality and daytime sleepiness were assessed using the Pittsburgh Sleep Quality Index (PSQI) and the Epworth Sleepiness Scale (ESS).
Results:
Statistically significant differences were observed between mothers of children with DMD and the control group regarding ESS scores, subjective sleep quality, daytime functioning, and total PSQI scores. Interestingly, mothers of children with DMD had lower ESS scores (4.35 ± 3.903) compared to the control group (p = 0.034). A moderately significant positive correlation was identified between ESS scores and total PSQI scores (r = 0.491, p < 0.001).
Conclusion:
Our findings revealed that the sleep quality of parents was better than anticipated. This suggests that specialized neuromuscular disease centers may positively impact the mental health and sleep hygiene of families. A multidisciplinary approach appears to support the psychological well-being and, indirectly, the sleep quality of parents managing chronic neuromuscular disorders.