Parent survey of sleep problems among children with CHARGE syndrome.
Parents of kids with CHARGE syndrome say bedtime routines and melatonin beat meds and weighted blankets for sleep problems.
01Research in Context
What this study did
Mulder et al. (2020) sent a short survey to parents of children with CHARGE syndrome. Parents listed each sleep problem their child had and rated how well different fixes worked. The team tallied the answers to see which troubles showed up most and which fixes parents liked best.
What they found
Trouble falling or staying asleep was the top complaint. Parents said a calm bedtime routine and low-dose melatonin helped 'some' or 'a lot.' Weighted blankets and prescription sleep pills were rated lower. No numbers were given; the order of helpfulness is what matters.
How this fits with other research
Sadeh et al. (2023) asked parents of autistic children the same questions and also found melatonin came out on top. Their 2023 data extend the CHARGE result to another rare group, showing the win holds up across diagnoses.
Heald et al. (2020) went one step further: they let parents try an online sleep-coaching program that taught the same bedtime routines CHARGE parents liked. Parents in the case series said the program was easy to use, proving the favored routines can be packaged and taught.
Lee et al. (2022) pooled 49 sleep surveys in autism and confirmed that poor sleep drags down daytime mood, focus, and behavior. That meta-analysis gives you the why: fixing sleep is not a luxury—it changes waking life.
Why it matters
If you serve a child with CHARGE, start with parent-friendly tools that scored best: steady bedtime steps and pediatrician-approved melatonin. Track nights for two weeks, then add or drop one tool at a time. The same low-cost plan works for other rare diagnoses, and better nights should bleed into smoother days.
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02At a glance
03Original abstract
Sleep problems are common among children, especially those with developmental disabilities, visual impairments, and behavioral problems. Past research has indicated a particularly high prevalence of clinically-relevant sleep problems for children with CHARGE syndrome, who often possess all three of these qualities. To gather additional information regarding the nature of these sleep problems and how they are most commonly treated amongst parents, an explorative survey was conducted with 30 parents of children with CHARGE syndrome with comorbid sleep problems using the Sleep Disturbance Scale for Children, as well as demographic and sleep questionnaires developed for use in this study. Our findings indicated that problems of sleep initiation and maintenance were most commonly reported, consistent with previous research. Parents most often reported the following factors suspected of contributing to sleep problems: self-regulation difficulties, teeth grinding, hormonal imbalance, problem behaviors, and anxiety. The most commonly administered treatments were reported to be the use of positive bedtime routines, melatonin treatment, the use of a weighted blanket, and prescription medications, respectively. While parents reported overall that they felt all three of these intervention strategies were slightly effective at improving their child's sleep problem, the use of positive bedtime routines and melatonin treatment were perceived as more effective by parents. These results aid professionals in the selection of future research and intervention strategies to recommend for parents of children with CHARGE syndrome.
Research in developmental disabilities, 2020 · doi:10.1016/j.ridd.2020.103614