Effects of an online caregiver respiratory education program on sleep-related outcomes and parental stress in children with neuromuscular diseases: a randomized controlled trial.
- 1Nursing Care Research Center, Clinical Sciences Institute, Faculty of Nursing, Baqiyatallah University of Medical Sciences, Tehran, Iran. [email protected].
- 2Student Research Committee, Baqiyatallah University of Medical Sciences, Tehran, Iran.
- 3Nursing Care Research Center, Clinical Sciences Institute, Faculty of Nursing, Baqiyatallah University of Medical Sciences, Tehran, Iran.
Abstract
Background
Children with neuromuscular diseases (NMDs) commonly experience sleep disturbances related to respiratory dysfunction, which may also increase caregiver stress.Objective
This study evaluated the effects of a structured caregiver respiratory education program on sleep-related outcomes in children with NMDs and parental stress.Methods
A randomized controlled pretest-posttest trial was conducted between December 2023 and April 2024 in Tehran and Isfahan, Iran. Ninety-nine children with NMD and their primary caregivers were randomly assigned to an intervention group (n = 50) or a control group (n = 49). The intervention group received four 75-minute online educational sessions over two weeks focusing on respiratory care techniques, including diaphragmatic breathing, airway clearance, postural drainage, effective coughing and suctioning, positioning, and basic cardiopulmonary resuscitation. Attendance was monitored during sessions. The control group received routine hospital-based education. Outcomes were assessed at baseline and two weeks post-intervention using the Children's Sleep Habits Questionnaire (CSHQ) and Stress Response Inventory (SRI).Results
No significant between-group differences were observed in the change in total sleep quality (between-group difference = - 0.12, 95% CI: -1.46 to 1.23; P = .286) or parental stress scores (between-group difference = - 0.89, 95% CI: -2.93 to 1.14; P = .871). However, exploratory analyses showed significant improvements in bedtime resistance (P = .01), sleep anxiety (P < .001), and parasomnias (P = .01) in the intervention group compared with the control group. Somatization scores also differed significantly between groups (P = .02), whereas no significant differences were observed for the remaining parental stress domains. Given the multiple subscale comparisons performed, these findings should be considered exploratory and interpreted with caution.Conclusion
Caregiver respiratory education may improve selected sleep-related behaviors in children with neuromuscular diseases and may have beneficial effects on specific dimensions of caregiver stress. Although no significant effects were observed on overall sleep quality or total parental stress, caregiver respiratory education may serve as a complementary rehabilitation approach for families of children with neuromuscular diseases. Further studies with longer follow-up periods and objective sleep outcome measures are needed to confirm these exploratory findings.Trial registration
Iranian Registry of Clinical Trials (IRCT; IRCT20221231056998N1) registered on April 25, 2023.
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BibTeX
@article{moayed2026effects,
title = {{Effects of an online caregiver respiratory education program on sleep-related outcomes and parental stress in children with neuromuscular diseases: a randomized controlled trial.}},
author = {Malihe Sadat Moayed and Sajjad Khaksar and Mehdi Jafari Oori and Forogh Sarhangi},
journal = {BMC pediatrics},
year = {2026},
month = aug,
doi = {10.1186/s12887-026-07465-3},
url = {https://europepmc.org/article/MED/42972277},
note = {CC BY},
}
RIS
TY - JOUR
TI - Effects of an online caregiver respiratory education program on sleep-related outcomes and parental stress in children with neuromuscular diseases: a randomized controlled trial.
AU - Malihe Sadat Moayed
AU - Sajjad Khaksar
AU - Mehdi Jafari Oori
AU - Forogh Sarhangi
PY - 2026
DA - 2026/08/05
JO - BMC pediatrics
DO - 10.1186/s12887-026-07465-3
UR - https://europepmc.org/article/MED/42972277
AB - Background Children with neuromuscular diseases (NMDs) commonly experience sleep disturbances related to respiratory dysfunction, which may also increase caregiver stress.Objective This study evaluated the effects of a structured caregiver respiratory education program on sleep-related outcomes in children with NMDs and parental stress.Methods A randomized controlled pretest-posttest trial was conducted between December 2023 and April 2024 in Tehran and Isfahan, Iran. Ninety-nine children with NMD and their primary caregivers were randomly assigned to an intervention group (n = 50) or a control group (n = 49). The intervention group received four 75-minute online educational sessions over two weeks focusing on respiratory care techniques, including diaphragmatic breathing, airway clearance, postural drainage, effective coughing and suctioning, positioning, and basic cardiopulmonary resuscitation. Attendance was monitored during sessions. The control group received routine hospital-based education. Outcomes were assessed at baseline and two weeks post-intervention using the Children's Sleep Habits Questionnaire (CSHQ) and Stress Response Inventory (SRI).Results No significant between-group differences were observed in the change in total sleep quality (between-group difference = - 0.12, 95% CI: -1.46 to 1.23; P = .286) or parental stress scores (between-group difference = - 0.89, 95% CI: -2.93 to 1.14; P = .871). However, exploratory analyses showed significant improvements in bedtime resistance (P = .01), sleep anxiety (P < .001), and parasomnias (P = .01) in the intervention group compared with the control group. Somatization scores also differed significantly between groups (P = .02), whereas no significant differences were observed for the remaining parental stress domains. Given the multiple subscale comparisons performed, these findings should be considered exploratory and interpreted with caution.Conclusion Caregiver respiratory education may improve selected sleep-related behaviors in children with neuromuscular diseases and may have beneficial effects on specific dimensions of caregiver stress. Although no significant effects were observed on overall sleep quality or total parental stress, caregiver respiratory education may serve as a complementary rehabilitation approach for families of children with neuromuscular diseases. Further studies with longer follow-up periods and objective sleep outcome measures are needed to confirm these exploratory findings.Trial registration Iranian Registry of Clinical Trials (IRCT; IRCT20221231056998N1) registered on April 25, 2023.
SN - 1471-2431
ER -