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CHARGE综合征患儿睡眠问题的家长调查

Parent survey of sleep problems among children with CHARGE syndrome.

作者信息

Kennert Benjamin A, Harshorne Timothy S, Kanouse Sandra, Johnson Carl

机构信息

Central Michigan University, Mount Pleasant, MI, USA.

Central Michigan University, Mount Pleasant, MI, USA.

出版信息

Res Dev Disabil. 2020 Jun;101:103614. doi: 10.1016/j.ridd.2020.103614. Epub 2020 Apr 2.

DOI:10.1016/j.ridd.2020.103614
PMID:32248059
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.

摘要

睡眠问题在儿童中很常见,尤其是那些患有发育障碍、视力障碍和行为问题的儿童。过去的研究表明,CHARGE综合征患儿临床上相关睡眠问题的患病率特别高,这些患儿往往具备上述所有三种特质。为了收集关于这些睡眠问题的性质以及家长最常用的治疗方法的更多信息,我们使用儿童睡眠障碍量表以及为本研究编制的人口统计学和睡眠问卷,对30名患有CHARGE综合征且伴有睡眠问题的患儿家长进行了一项探索性调查。我们的研究结果表明,入睡困难和维持睡眠困难是最常被报告的问题,这与之前的研究一致。家长最常报告的以下因素被怀疑与睡眠问题有关:自我调节困难、磨牙、激素失衡、问题行为和焦虑。最常用的治疗方法分别是采用积极的睡前常规、褪黑素治疗、使用加重毛毯和处方药。虽然家长总体上报告说,他们觉得这三种干预策略在改善孩子的睡眠问题上都有一定效果,但家长认为采用积极的睡前常规和褪黑素治疗更有效。这些结果有助于专业人员选择未来的研究和干预策略,以便向CHARGE综合征患儿的家长推荐。

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