Insomnia common and troubling sleep problem: Angelman parents
Sleep disturbances affect both child and caregivers, with scant support given
Among the many sleeping problems facing children with Angelman syndrome, insomnia and the circadian rhythm disturbances that fracture sleep are the most frequent and troublesome, according to a survey of parents and caregivers.
Sleep disturbances affect a child’s behavior at home and school, the adults noted, while depriving parents of the sleep they need to maintain family and social relationships, work, and their mental health and physical well-being.
According to parents, prescription medications, sleeping with the child, exercise, and changes to their child’s bedroom were rated as the most effective approaches in dealing with these issues.
“The detrimental effects of chronic sleep deprivation among children with developmental disabilities and … chronic health conditions, are well documented,” the researchers wrote, but “the collateral impacts of sleep problems on children with [Angelman syndrome] and their parents is greatly understudied.”
Sleep disturbances and poor sleep cycles common with Angelman syndrome
Survey findings were reported in the study, “The Type, Severity, and Impact of Sleep Problems in Children With Angelman Syndrome and Parental Help-seeking Patterns,” published in the journal Behavioral Sleep Medicine.
Children with Angelman syndrome are known to have abnormal sleep cycles and sleep disturbances, but Angelman research has focused primarily on underlying biological reasons for these patterns, from genetic factors to seizures.
As little is known about the role the social environment plays in these sleep disturbances, especially parent-child interactions, researchers in New Zealand and the U.S. asked parents and caregivers of children with Angelman to complete a sleep survey. The project was supported by The Angelman Network.
Their goal was to understand the type and severity of sleep problems, their impact on parents and family, treatments and their perceived effectiveness, and sources of support and advice.
“A survey of parents’ perspectives of their child’s sleep problems and their help-seeking behavior enables us to address some of these research gaps,” the researchers wrote.
A total of 139 surveys were completed by a parent or caregiver of a child, infants to 21 year olds, with a clinical Angelman diagnosis who experienced some form of sleep disturbance.
An average of 4.5 sleep problems was reported, ranging from one to 11 separate issues.
All 139 parents or caregivers noted insomnia as a sleep problem
Insomnia, which includes difficulties with starting to sleep and staying asleep, was the most common, cited by all 139 survey respondents. It was followed by waking up at night (71%) or awakening early in the morning (63%), waking up repeatedly during the night (61%), being slow to fall asleep (61%), and needing to sleep with a parent in either the parent’s (23%) or the child’s (27%) bed.
Daytime sleepiness was less common, reported by 8% of respondents, supporting the belief that “children with AS [Angelman syndrome] may have a diminished need for sleep,” the team wrote.
Problems affecting the circadian rhythm — a person’s biological clock that controls body temperature, digestion, and sleep cycles among its functions — were seen in most children. They included fragmented sleep, and exceedingly early or late sleeping and waking phases, a problem called advanced or delayed sleep phase disorder.
“Frequent and lengthy night wakings, accompanied by early wakings dominated presentations across the age ranges,” the researchers wrote.
Acting out or behaviors that resisted bedtime and sleep, from crying or demanding parents’ attention to playing with toys, also were typical. Fewer children experienced nightmares, sleepwalking or talking while asleep, or had night terrors or tooth grinding.
Disturbed sleep impacted the children’s behavior at school and in the home, about half of the parent’s surveyed reported, with their ability to learn and control their emotions most affected.
Most parents rated sleep problems as a primary concern or issue about which they “very” or “somewhat concerned.” One respondent was “not concerned,” and 13 others were “mildly concerned.”
Most parents and caregivers also considered sleep issues their primary focus or “very important to treat.” The priority placed here rose in association with the number of sleep issues in a child, regardless of the child’s age.
Majority of parents reported little or occasional support
A child’s poor sleep affected the sleep of parents and caregivers, weighing on their day-to-day functioning, relationships and health.
A majority (59%) also reported receiving little or occasional support, while 20% said they had suitable or extensive support. Most parents sought help from medical professionals, who largely recommended medications. Few were instructed in behavioral, learning, or environmental approaches that might promote sleep. About half noted looking for help and support on the internet or from other parents.
Well more than two-thirds of the parents (85%) reported being given prescription medications to help their child sleep, the most common being melatonin followed by clonidine.
A majority of parents also tried ignoring the child, changing the bedroom “environment” by taking out toys or ensuring the room’s quieter, or using weighted blankets, white noise, and stories. About one-quarter tried scheduled awakenings.
All these approaches are supported in studies, the researchers noted, while a number also tried “unsupported” approaches, from massages and exercise to sleeping with the child.
“There was little relationship between parent-reported effectiveness and level of empirical support,” the researchers wrote, adding that parents reported trying supported and unsupported treatments “with almost equal frequency.”
Parents rated co-sleeping, prescription medications, exercise, and changes to the bedroom environment as the most effective for Angelman-related sleep problems.
“Study findings highlight the need to establish a disability-specific profile of … sleep problems experienced by children with AS, and have further implications for the delivery of clinical services and support provided to parents of children with AS,” the researchers wrote.