"我是家庭的魔术师和杂耍演员":自闭症父母在 COVID-19 大流行期间的育儿经历。

Melanie Heyworth, Simon Brett, Jacquiline den Houting, Iliana Magiati, Robyn Steward, Anna Urbanowicz, Marc Stears, Elizabeth Pellicano
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引用次数: 0

摘要

背景介绍人们对自闭症父母的情况知之甚少。现有文献表明,自闭症父母在处理日常的养育和家庭生活需求时可能会遇到困难。虽然新的研究也强调了更多积极的育儿经验,但仍需要对自闭症父母的身份有更深入的了解:本研究旨在了解自闭症父母在 COVID-19 流行初期的育儿经历:35 名澳大利亚自闭症儿童(4-25 岁)的父母(95% 为女性)参加了半结构式访谈,旨在了解他们在封锁期间的生活经历。我们采用归纳法(自下而上)进行了反思性主题分析,以确定数据集中的模式化含义:结果:自闭症家长多次谈到封锁如何使他们从平时照顾孩子的紧张生活中解脱出来。尽管如此,大多数自闭症家长认为,在封锁期间,要努力兼顾所有事情的 "累积压力 "非常具有挑战性,最终对家长的心理健康造成了损害。家长们意识到他们需要支持,但发现很难向他们通常的社会支持(包括自闭症朋友)寻求帮助,正式的支持几乎不存在。因此,他们感到 "非常被遗忘"。尽管如此,他们描述了他们与孩子的联系是如何在禁闭期间变得更加紧密的,因为他们把重点放在了培养孩子的 "心理健康高于一切 "上:我们的分析表明,传统生活对自闭症父母来说是多么具有挑战性。为人父母需要应对一系列独特的要求,而这些要求通常可以通过许多自闭症父母所利用的非正式支持得到部分解决。然而,在大流行病期间,非正式支持的相对缺失使他们不得不依赖于更为正式的支持,而这些支持并不到位。迫切需要开展研究,以确定对自闭症家长最有效的正式支持,最好是与自闭症家长本身合作。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
"I'm the Family Ringmaster and Juggler": Autistic Parents' Experiences of Parenting During the COVID-19 Pandemic.

Background: Little is known about autistic parenthood. The literature that exists suggests that autistic parents can find it difficult to manage the everyday demands of parenting and domestic life. While emerging research has also highlighted more positive parenting experiences, greater understanding of autistic parenthood is needed.

Objective: This study sought to understand autistic parents' parenting experiences during the initial phase of the COVID-19 pandemic.

Methods: Thirty-five Australian autistic parents (95% women) of autistic children (aged 4-25 years) took part in semi-structured interviews designed to elicit their experiences of life during lockdown. We used reflexive thematic analysis using an inductive (bottom-up) approach to identify patterned meanings within the data set.

Results: Autistic parents repeatedly spoke of how the lockdown brought some initial relief from the intensity of their usual lives caring for their children. Nevertheless, most autistic parents felt that the "cumulative stress" of trying to juggle everything during lockdown proved very challenging, which eventually took its toll on parents' mental health. Parents were aware that they needed support but found it difficult to reach out to their usual social supports (including autistic friends) for help, and formal supports were virtually nonexistent. Consequently, they felt "very much forgotten." Nevertheless, they described how their connections with their children grew stronger over lockdown as they focused on nurturing their children's "mental health ahead of everything else."

Conclusions: Our analysis shows how challenging conventional life can be for autistic parents. Parenting requires grappling with a distinctive set of demands, which are usually partially manageable through the informal supports many autistic parents draw upon. The relative absence of informal supports during the pandemic, however, left them reliant on more formal supports, which were not forthcoming. Research is urgently needed to identify the most effective formal supports for autistic parents, ideally in partnership with autistic parents themselves.

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