Children with SMA, their caregivers struggle to get quality sleep: Study
Clinicians urged to proactively assess, address these issues in patients
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- Children with SMA often struggle with sleep.
- Caregivers of children with SMA also face significant sleep deprivation.
- Clinicians should proactively assess and address sleep problems in SMA patients and caregivers.
Children with spinal muscular atrophy (SMA) often struggle to get a good night’s sleep — and their caregivers also commonly report feeling sleep-deprived, according to a new study.
“Sleep problems have potentially critical consequences for children and are also to a great extent related to caregivers’ sleep. We therefore believe it is of importance for clinicians to be able to assess and address sleep in children with SMA as well as their caregivers,” researchers wrote in the study, “Sleep in children with spinal muscular atrophy and their caregivers: Exploring sleep problems and the need for care,” which was published in Research in Developmental Disabilities.
Sleep is essential for health, providing the body and brain with the opportunity to rest and recuperate. Poor sleep is associated with a wide range of health issues.
Many SMA children have difficulty falling asleep
SMA is a genetic disorder that causes symptoms such as muscle weakness and mobility limitations. In some people with SMA, the disease can cause breathing problems, and many studies have closely examined how sleep-related breathing issues manifest in these individuals. The broader impact of the disease on sleep quality for kids with SMA and their caregivers has received less attention from scientists, however.
To help fill this gap, scientists in the Netherlands administered a questionnaire to examine caregivers’ perceptions of sleep among children with SMA. The survey was completed by 51 caregivers of SMA children, who answered questions about both their child’s sleep quality and their own. For comparison, the survey was also completed by 287 caregivers of children without any known developmental abnormalities.
Results indicated that many children with SMA struggle to fall asleep and/or wake up abnormally early — in fact, more than half of SMA caregivers reported that their children often or always experienced these issues.
The current study shows elevated levels of sleep problems in children with SMA, with over half of children often or always having sleep problems on two or more domains.
In an open-ended portion of the survey, one caregiver wrote: “Since he (8 years) was born, he never slept through the night. On average, he wakes up 4-5 times per night and wants to be turned in bed.”
Daytime fatigue was significantly more common among SMA children, reported by more than 60% of caregivers.
Data also indicated that children with SMA are more likely than their typically developing peers to snore, to experience pain or discomfort during the night, and to wake up during the night.
“The current study shows elevated levels of sleep problems in children with SMA, with over half of children often or always having sleep problems on two or more domains,” the researchers wrote.
Caregivers’ sleep issues strongly related to their child waking up
SMA caregivers also reported notable sleep issues themselves, with significantly more sleep deprivation and less sleep satisfaction compared with caregivers of typically developing children. One SMA parent described their family as “on the edge of extreme sleep deprivation.”
The researchers noted that caregivers’ sleep issues were “strongly related to their child waking up or having pain or discomfort during the night. In fact, caregivers of children with SMA were less satisfied with their own sleep than that of their child.”
Overall, these data underscore the importance of helping both children with SMA and their caregivers find strategies to achieve a good night’s sleep. The researchers called on SMA clinicians to be proactive about these discussions, noting that sleep should be a priority even if breathing problems are not a concern.
“It is essential that attention to sleep is integrated into care at every stage of the disease trajectory, not only when breathing support becomes necessary,” the scientists wrote. “By addressing sleep-related difficulties, healthcare professionals can contribute to improving the overall well-being and quality of life for children with SMA and their families.”
