Pavlopoulou Georgia
Department of Psychology and Human Development, Institute of Education, University College London, London, United Kingdom.
Anna Freud National Centre for Children and Families, London, United Kingdom.
Front Psychol. 2020 Dec 22;11:583868. doi: 10.3389/fpsyg.2020.583868. eCollection 2020.
Sleep is a strong predictor of quality of life and has been related to cognitive and behavioral functioning. However, research has shown that most autistic people experience sleep problems throughout their life. The most common sleep problems include sleep onset delay, frequent night-time wakings and shorter total sleep time. Despite the importance of sleep on many domains, it is still unclear from first-hand accounts what helps autistic people to sleep. The purpose of this study is to explore together with autistic adolescents their sleep-related practices before bedtime and during the day which contribute to a good night's sleep.
Fifty-four autistic adolescents collaborated with an academic researcher in a novel adapted photo-elicitation methodology, rooted in a Lifeworld framework. The adolescents were invited to collect and analyze their data. The data were also presented in a community knowledge exchange event.
Several self-reported practices that facilitate better nocturnal sleep were identified. Those were organized into two thematics: Evening/bedtime factors and Day time factors. These included practices such as personalized sensory and relaxation tools before bed and during night-time, engaging in a range of physical activities during daytime and accommodating personal time to engage with highly preferred and intense focus activities and hobbies. It also included spending time in predictable and fun ways with family members before bedtime.
This is the first time that a study uses a novel methodological approach based on personal accounts elicited by photos rooted in a Lifeworld framework to describe personal sleep-related practices before bedtime and during the day to identify a "good night of sleep" in autistic adolescents. The outcomes from the current study showed that sleep facilitating factors are in a direct contrast to the sleep hygiene recommendations. Therefore, it is thus important for the sleep practitioners and healthcare providers to move beyond providing standardized sleep hygiene interventions. A Lifeworld led care model that pays attention to personal experiences, promotes sense of agency, evaluates both autism-specific strengths and struggles could and should complement biomedical approaches.
This is the first study to examine autistic adolescents' self-reported sleep habits and factors which facilitate autistic adolescents' sleep by employing adapted photo-elicitation interviews. This study is innovative in at least three ways. First, it examines the factors that may facilitate a good night's sleep through personal accounts of autistic adolescents. Second, this is the first sleep study to adopt a collaborative, flexible approach to understanding positive sleep factors in the lives of autistic adolescents. This study employed a personalized approach into collecting, categorizing, coding, and analyzing qualitative data allowing autistic adolescents and the researcher to work together across key stages of data collection and data analysis. Third, we adopted a theoretical framework that allows us to consider autistic adolescents in both agency and vulnerability positions when it comes to their sleep difficulties. Our results highlight that sleep should be treated individually and in relation to the environmental and personal factors that affect each autistic person. Hence, researchers and professionals may benefit from working collaboratively with autistic adolescents with the aim to identify individual strengths and adopt a positive narrative around sleep. Furthermore, it is important to further examine both the daytime and evening factors that may affect bedtime and the quality and quantity of sleep as well as the role of intense focused interests and physical activities that cultivate positive feelings and help autistic people to relax before bedtime.
睡眠是生活质量的有力预测指标，且与认知和行为功能相关。然而，研究表明，大多数自闭症患者一生都存在睡眠问题。最常见的睡眠问题包括入睡延迟、夜间频繁醒来以及总睡眠时间缩短。尽管睡眠在许多方面都很重要，但从第一手资料来看，仍不清楚什么有助于自闭症患者入睡。本研究的目的是与自闭症青少年一起探讨他们睡前和白天有助于获得良好夜间睡眠的与睡眠相关的行为。
54名自闭症青少年与一名学术研究人员合作，采用了一种基于生活世界框架的新颖的适应性照片引出法。邀请青少年收集和分析他们的数据。这些数据还在一次社区知识交流活动中展示。
确定了几种有助于改善夜间睡眠的自我报告行为。这些行为分为两个主题：晚上/睡前因素和白天因素。这些行为包括睡前和夜间使用个性化的感官和放松工具、白天进行一系列体育活动，以及安排个人时间参与非常喜欢且能高度集中注意力的活动和爱好。还包括睡前以可预测且有趣的方式与家人共度时光。
这是首次有研究使用基于生活世界框架的照片引出的个人叙述的新颖方法，来描述自闭症青少年睡前和白天与睡眠相关的个人行为，以确定“良好的夜间睡眠”。本研究的结果表明，促进睡眠的因素与睡眠卫生建议形成了直接对比。因此，对于睡眠从业者和医疗保健提供者来说，超越提供标准化的睡眠卫生干预措施非常重要。以生活世界为导向的护理模式，关注个人经历，促进自主感，评估自闭症患者的特定优势和困难，可以而且应该补充生物医学方法。
这是第一项通过采用适应性照片引出访谈来研究自闭症青少年自我报告的睡眠习惯和促进自闭症青少年睡眠的因素的研究。这项研究至少在三个方面具有创新性。第一，它通过自闭症青少年的个人叙述来研究可能有助于获得良好夜间睡眠的因素。第二，这是第一项采用协作、灵活的方法来理解自闭症青少年生活中积极睡眠因素的睡眠研究。本研究采用个性化方法收集、分类、编码和分析定性数据，使自闭症青少年和研究人员能够在数据收集和数据分析的关键阶段共同合作。第三，我们采用了一个理论框架，使我们在考虑自闭症青少年睡眠困难时，能够将他们置于自主和脆弱的位置。我们的结果强调，睡眠应该根据影响每个自闭症患者的环境和个人因素进行个体化对待。因此，研究人员和专业人员可能会从与自闭症青少年合作中受益，目的是识别个人优势并围绕睡眠形成积极的叙述。此外，进一步研究可能影响就寝时间以及睡眠质量和数量的白天和晚上因素，以及强烈的专注兴趣和体育活动在培养积极情绪并帮助自闭症患者在睡前放松方面的作用也很重要。
