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Core experiences of parents of children with autism during the COVID-19 pandemic lockdown
Autism ( IF 6.684 ) Pub Date : 2021-01-12 , DOI: 10.1177/1362361320984317
Itay Tokatly Latzer 1, 2 , Yael Leitner 1, 2 , Orit Karnieli-Miller 2
Affiliation  

The lockdown that was imposed by governments as part of the attempt to contain the COVID-19 pandemic included extreme measures, such as home confinement and the shutting down of special education systems. Our aim was to learn about the core experiences of parents of children with autism during this significant life disturbance. Thirty-one parents of 25 children with autism participated in semi-structured telephone interviews which were transcribed verbatim and underwent a qualitative, immersion/crystallization analysis. The analysis was conducted in an iterative consensus-building process to identify parents’ experiences, concerns, challenges, coping strategies, and perceived needs during the lockdown. The main themes that emerged related to the various parental concerns; the major difficulties encountered during this unique time, the functional, social, and behavioral implications the lockdown had on these children; and the manner in which the parents coped as an indication of their resourcefulness and outlook. Our findings broaden the insight into the underlying elements of the hardships and gains experienced by children with autism and their parents in times of significant life adversity. Programs in such times should be directed at supporting and guiding parents on how to better accommodate to the situation, thereby optimizing their coping strategies and resilience.

Lay abstract

The lockdown and home isolation due to the COVID-19 pandemic led to significant transformation in lifestyles. Being a parent in this situation was not easy for anyone, much less for parents of children with special needs. The shutting down of special education systems meant that parents lost a vital support network and had to be the sole full-time caregivers despite often lacking the skills to cope with this new and daunting situation. We interviewed parents and learned that the main difficulties faced by homebound autistic children stemmed from the change in routine, lack of special education services, limited physical space, and food- and sleep-related issues. Some children experienced worsening in behavioral, social, and developmental domains, yet others seemed to not only overcome the challenges of changing conditions but even benefit from them. The children’s success or failure was directly related to how their parents coped. The key factors that enabled successful coping were the parents’ ability to accommodate to the child’s needs, their own creativeness and resourcefulness, and a generally positive outlook. The results of this analysis revealed that the best way to benefit autistic children caught up in drastic changes in their routine lifestyle is to invest in a strong support system for their parents.



中文翻译:

COVID-19大流行封锁期间自闭症儿童父母的核心经历

政府为遏制COVID-19大流行而进行的封锁包括极端措施,例如家庭禁闭和特殊教育系统的关闭。我们的目的是了解自闭症儿童父母在这种严重的生活障碍中的核心经历。25名自闭症儿童的31名父母参加了半结构电话访谈,逐字抄录并进行了定性,浸入/结晶分析。该分析是在反复达成共识的过程中进行的,目的是确定锁定期间父母的经历,担忧,挑战,应对策略和感知需求。出现的主要主题与父母的各种关注有关。在这个独特的时期,功能,封锁对这些孩子的社会和行为影响;以及父母应付的方式,表明他们的机智和远见。我们的发现扩大了对自闭症儿童及其父母在重大生活逆境中所经历的困难和收获的内在因素的认识。这种时期的计划应该针对支持和指导父母如何更好地适应情况,从而优化他们的应对策略和适应能力。我们的发现扩大了对自闭症儿童及其父母在重大生活逆境中所经历的困难和收获的内在因素的认识。这种时期的计划应针对支持和指导父母如何更好地适应情况,从而优化他们的应对策略和适应能力。我们的发现扩大了对自闭症儿童及其父母在重大生活逆境中所经历的困难和收获的内在因素的认识。这种时期的计划应针对支持和指导父母如何更好地适应情况,从而优化他们的应对策略和适应能力。

放置摘要

由于发生COVID-19大流行而导致的封锁和家庭隔离导致了生活方式的重大转变。在这种情况下成为父母对任何人来说都不容易,对有特殊需要的孩子的父母更是如此。特殊教育系统的关闭意味着父母失去了至关重要的支持网络,尽管他们常常缺乏应付这种新的艰巨状况的技能,但他们必须是唯一的全职照顾者。我们采访了父母,并了解到自闭症儿童面临的主要困难源于常规的改变,缺乏特殊教育服务,有限的身体空间以及与食物和睡眠有关的问题。一些孩子在行为,社交和发展方面经历了恶化,其他人似乎不仅克服了条件变化带来的挑战,甚至从中受益。孩子的成功或失败与父母的应对方式直接相关。能够成功应对的关键因素是父母适应孩子需求的能力,他们自己的创造力和机智以及总体上乐观的态度。分析结果表明,让陷入例行生活急剧变化的自闭症儿童受益的最佳方法是为父母投资一个强大的支持系统。

更新日期:2021-01-13
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