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Parent survey of sleep problems among children with CHARGE syndrome

Benjamin A Kennert1, Timothy S Harshorne1, Sandra Kanouse1

  • 1Central Michigan University, Mount Pleasant, MI, USA.

Research in Developmental Disabilities
|April 6, 2020
PubMed

Insights

Children with CHARGE syndrome experience frequent sleep initiation and maintenance issues. Positive bedtime routines and melatonin are perceived as most effective by parents for managing these sleep disturbances.

Area of Science:

  • Pediatric Sleep Medicine
  • Genetics and Rare Diseases
  • Child Psychology

Background:

  • Sleep problems are prevalent in children, particularly those with developmental disabilities, visual impairments, and behavioral issues.
  • Children with CHARGE syndrome often exhibit these comorbidities, leading to a high prevalence of clinically relevant sleep disturbances.
  • Understanding the specific nature and treatment of sleep problems in this population is crucial.

Purpose of the Study:

  • To explore the characteristics of sleep problems in children with CHARGE syndrome.
  • To identify factors parents suspect contribute to these sleep issues.
  • To document commonly used treatments and their perceived effectiveness by parents.

Main Methods:

  • An explorative survey was conducted with 30 parents of children with CHARGE syndrome and comorbid sleep problems.
  • The Sleep Disturbance Scale for Children (SDSC) was utilized.
  • Custom demographic and sleep questionnaires were administered.

Main Results:

  • Sleep initiation and maintenance problems were the most frequently reported issues.
  • Suspected contributing factors included self-regulation difficulties, teeth grinding, hormonal imbalance, problem behaviors, and anxiety.
  • Commonly used treatments included positive bedtime routines, melatonin, weighted blankets, and prescription medications.

Conclusions:

  • Positive bedtime routines and melatonin treatment were perceived by parents as more effective than other interventions.
  • Findings support the need for targeted research and interventions for sleep problems in children with CHARGE syndrome.
  • These insights can guide healthcare professionals in recommending effective strategies for parents.

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