Pediatric Sleep Quality and Parental Stress in Neuromuscular Disorders: Descriptive Analytical Study.

Background: Neuromuscular disorders (NMDs) constitute a heterogeneous group of disorders that affect motor neurons, neuromuscular junctions, and muscle fibers, resulting in symptoms such as muscle weakness, fatigue, and reduced mobility. These conditions significantly affect patients' quality of life and impose a substantial burden on caregivers. Spinal muscular atrophy (SMA) is a relatively common NMD in children that presents in various types with varying degrees of severity.

Objective: This study aimed to evaluate the sleep quality of children with NMDs, particularly SMA types 1, 2, and 3 and assess the stress levels experienced by their parents.

Methods: A descriptive analytical study was conducted from February to October 2023, in selected hospitals and dystrophy associations in Tehran and Isfahan, Iran. A total of 207 children aged 1-14 years with various NMDs were included in the study. Data were collected using a web-based questionnaire with 3 parts: demographic information, the Children's Sleep Habits Questionnaire to assess children's sleep, and the Stress Response Inventory to measure parental stress. Statistical analyses were performed using SPSS version 22, with an α level of .05.

Results: Significant differences in sleep quality were found among SMA types, with mean scores of 74.76 (SD 7.48) for SMA type 1, 76.4 (SD 7.29) for SMA type 2, 72.88 (SD 6.73) for SMA type 3, and 75.87 (SD 5.74) for other NMDs (P=.02). A correlation was found between sleep and length of hospital stay (r=0.234, P<.001)and between sleep and the child's sex (r=-0.140, P=.04). Parental stress scores averaged 95.73 (SD 32.12). There was not a statistically significant difference in parental stress scores among the 4 groups (P=.78). This suggests that parental stress levels were similar across different NMD groups.

Conclusions: Sleep disorders are prevalent among children with NMDs, especially SMA. Parents experience high levels of stress that can affect the care they provide. Therefore, interventions to improve children's sleep and address parental stress are crucial. Regular screening, counseling, and tailored support are recommended to enhance the well-being of children with NMDs and their families.