JMIR Publications

Background:

Neuromuscular diseases (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 NMDs 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 three-part online questionnaire: demographic information, Children's Sleep Habits Questionnaire (CSHQ) to assess children's sleep, and Stress Response Inventory (SRI) to measure parental stress. Statistical analyses were performed using SPSS version 22, with the significance set at P < .05.

Results:

Significant differences in sleep quality were found among SMA types, with mean scores of 74.76± 7.48 for SMA1, 76.4±07.29 for SMA2, 72.88±6.73 for SMA3, and 75.87±5.74for other NMDs (P = .025). A correlation was found between sleep and length of hospital stay (r = .234, P < .000), as well as sex (r = -.140, P = .043). Parental stress scores averaged 95.73±32.12. There was no statistically significant difference in parental stress scores among the four groups (P =.783). 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.