Cerebra Centre for Neurodevelopmental Disorders, School of Psychology, University of Birmingham, Birmingham, B15 2TT, United Kingdom.
Res Dev Disabil. 2017 Oct;69:105-115. doi: 10.1016/j.ridd.2017.07.017. Epub 2017 Aug 30.
Angelman syndrome is a rare genetic syndrome, in which sleep disturbances are reported for 20-80% of individuals (Williams et al., 2006). This interview study delineated parental perceptions of sleep problems experienced by children with Angelman syndrome and the impact on parental sleep quality, health and wellbeing. The nature of desired interventions was also explored. Semi-structured interviews were completed with parents of 50 children, aged 16 months-15 years with Angelman syndrome who experienced current or historic sleep problems; predominantly night waking and settling problems. Parents were concerned by the impact of their child's sleep quality upon their own ability to function during the day. The importance of considering parental experiences was evidenced by variability in coping e.g. despite the persistence of sleep problems 20% of parents did not feel the need for any additional support. Amongst a range of types of further support desired, 27% cited further support with a behavioural intervention, and information about the trajectory of sleep problems in Angelman syndrome (18%). The results suggest that behavioural interventions supporting both children and parents in improving their sleep quality and well-being, and longitudinal research into sleep problems should be prioritised.
安琪曼综合征是一种罕见的遗传综合征，据报道，20-80%的个体存在睡眠障碍(Williams 等人，2006 年)。本访谈研究描述了父母对患有安琪曼综合征的儿童所经历的睡眠问题的看法，以及这些问题对父母睡眠质量、健康和幸福感的影响。还探讨了所需干预措施的性质。对 50 名患有安琪曼综合征且目前或曾经存在睡眠问题(主要是夜间醒来和入睡问题)的 16 个月至 15 岁的儿童的父母进行了半结构化访谈。父母对孩子的睡眠质量对他们白天的功能能力的影响感到担忧。尽管 20%的父母认为不需要任何额外的支持，但他们在应对方式上的差异证明了考虑父母经历的重要性，例如尽管存在睡眠问题持续存在。在父母希望得到的各种进一步支持中，27%的人提到了进一步的行为干预支持，以及关于安琪曼综合征中睡眠问题发展轨迹的信息(18%)。研究结果表明，应优先重视支持儿童和父母改善睡眠质量和幸福感的行为干预措施，以及对睡眠问题的纵向研究。
