JMIR Publications

ABSTRACT

Background:

Sleep quality and parental stress levels play an important role in the care of children with neuromuscular disorders (NMD). However, there has been no comprehensive study conducted on the sleep problems experienced by children with NMD and the stress levels of their parents in Iran.

Objective:

The purpose of this study is to examine the sleep quality of children with NMD and the level of stress experienced by their parents.

Methods:

This descriptive study was conducted in selected hospitals in Tehran and Isfahan, as well as the dystrophy association of these centers in Iran in 2023. The research sample consisted of 207 children aged 1-14 diagnosed with NMD. These children were assessed using a three-part online demographic information questionnaire, the Children's Sleep Habits Questionnaire (CSHQ) scale, and the Stress Response Inventory (SRI) questionnaire to measure parental stress.

Results:

Of the 207 NMD children studied, 24% had SMA (Spinal muscular atrophy)1, 46% had SMA2, 26% had SMA3, and only 4% had other diseases. The average age of these children was 7.14 (4.1) and 55% were boys, while 45% were girls. The mean stress score of the parents was 95.73 (32.12) and the mean sleep quality of the children was 74.37 (7.14). Correlation analysis showed a statistically significant relationship between the duration of hospitalization and sex with child sleep variables, as well as between the children's illness and parental stress (P<0.05).

Conclusions:

Sleep disruption is common in children with NMD, especially SMA, and their parents experience high levels of stress. These factors can impact the quality of care provided to these children. Therefore, interventions to improve sleep in these children and reduce parental stress are recommended.