Parents of Children with Angelman Syndrome Outline How Their Youngsters’ Sleep Problems Affect Them
Sleep problems of children with Angelman syndrome (AS) take a toll on parents as well, according to a study that takes a closer look at those challenges than previous research.
The findings of the study, which was based on interviews with parents, prompted the research team to call for ways to help parents deal better with the challenges.
Researchers published the study, titled “Sleep in children with Angelman syndrome: Parental concerns and priorities,” in the journal Research in Developmental Disabilities.
Similar to children with other intellectual disabilities, many youngsters with AS experience sleep problems. Estimates of the number affected cover a wide range — 20 to 80 percent. The huge differences in the estimates could be due to lack of a consistent definition of what constitutes sleep disturbances.
Sleep problems in children with AS include taking a long time falling asleep, sleeping less than the should, and night walking.
A number of studies have reported that when a child takes a long time to fall asleep, their parents often experience insomnia and daytime sleepiness. Children’s night walking in particular disturbs their mothers’ sleep, research has shown.
Until the University of Birmingham study, no research had taken a comprehensive look at how parents see the sleep problems affecting both their children and themselves.
Researchers interviewed parents of 50 children with AS, most of them living in the United States. The children ranged from 16 months to 15 years old. All had a history of sleep disturbances, especially problems falling asleep and night walking. The disturbances started before they were even a year old.
In addition to addressing the challenges that children’s sleep disturbances pose for both the children and their parents, the study covered ways that parents could manage the challenges.
A key finding was parents’ report that the disturbances robbed them of sleep, preventing them from functioning as well as they could during the day. Most children “seek out parent attention when they awake during the night, thus potentially increasing the proportion of the night that the parent is awake for,” the researchers wrote.
Parents reported that night walking was a bigger problem than getting children to fall sleep — a finding that mirrors previous studies.
Two approaches that parents used to manage their children’s sleep problems were keeping them to a routine and using behavioral strategies, with or without melatonin, a hormone supplement that can help people fall asleep.
Researchers also discovered that a higher percentage of parents seek professional help with their children’s sleep problems these days than in the past.
Interestingly, 20 percent of parents said they did not need additional support.
Among those who said they would welcome support, 27 percent said they could use behavioral strategies for dealing with specific problems, such as getting children to fall asleep.
Researchers suggested that behavioral strategies could help both children and parents sleep better, improving their well-being. The study also highlighted the importance of doctors and other professionals considering the sleep problems’ “wider impact upon parents, which parents considered to be the most debilitating aspect of their child’s sleep problems,” the team wrote.
The researchers called for more studies on sleep disturbances’ impact on children with AS. They also recommended taking parents’ needs into account when doctors and other professionals come up with strategies to deal with the disturbances.