Khaksar Sajjad, Jafari-Oori Mehdi, Sarhangi Forogh, Moayed Malihe Sadat
Student Research Committee, Baqiyatallah University of Medical Sciences, Tehran, Iran.
Nursing Care Research Center, Clinical Sciences Institute, Nursing Faculty, Baqiyatallah University of Medical Sciences, Vanak Square, Tehran, Iran, 98 9127297199.
Asian Pac Isl Nurs J. 2025 Jan 28;9:e56667. doi: 10.2196/56667.
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.
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.
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.
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.
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.
神经肌肉疾病（NMDs）是一组异质性疾病，会影响运动神经元、神经肌肉接头和肌纤维，导致肌肉无力、疲劳和活动能力下降等症状。这些疾病严重影响患者的生活质量，并给照顾者带来沉重负担。脊髓性肌萎缩症（SMA）是儿童中相对常见的一种NMD，有多种类型，严重程度各不相同。
本研究旨在评估患有NMDs的儿童，特别是1型、2型和3型SMA儿童的睡眠质量，并评估其父母所经历的压力水平。
2023年2月至10月，在伊朗德黑兰和伊斯法罕的选定医院和肌营养不良协会开展了一项描述性分析研究。共有207名1至14岁患有各种NMDs的儿童纳入研究。使用基于网络的问卷收集数据，问卷包括三个部分：人口统计学信息、用于评估儿童睡眠的儿童睡眠习惯问卷，以及用于测量父母压力的压力反应量表。使用SPSS 22版进行统计分析，α水平为0.05。
不同类型SMA的睡眠质量存在显著差异，1型SMA的平均得分为74.76（标准差7.48），2型SMA为76.4（标准差7.29），3型SMA为72.88（标准差6.73），其他NMDs为75.87（标准差5.74）（P=0.02）。发现睡眠与住院时间之间存在相关性（r=0.234，P<0.001），睡眠与儿童性别之间也存在相关性（r=-0.140，P=0.04）。父母压力得分平均为95.73（标准差32.12）。四组父母的压力得分在统计学上没有显著差异（P=0.78）。这表明不同NMD组的父母压力水平相似。
睡眠障碍在患有NMDs的儿童中普遍存在，尤其是SMA。父母承受着高水平的压力，这可能会影响他们提供的护理。因此，改善儿童睡眠和解决父母压力的干预措施至关重要。建议进行定期筛查、咨询和提供量身定制的支持，以提高患有NMDs的儿童及其家庭的幸福感。
