COVID-19, social isolation and the mental health of autistic people and their families: A qualitative study
COVID-19, social isolation and the mental health of autistic people and their families: A qualitative study
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DOI：
10.1177/13623613211035936
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发表时间：
2021-08-06
期刊：
影响因子：
5.2
通讯作者：
Stears, Marc
中科院分区：
文献类型：
--
作者：
Pellicano, Elizabeth;Brett, Simon;Stears, Marc
2019冠状病毒病大流行及其应对政策对数百万人的心理健康产生了不利影响。在这里，我们用定性的方法来调查它对自闭症患者及其家庭的影响。具体来说，我们解决了：在最初的封锁期间，自闭症患者是如何经历社会孤立的增加的？封锁对他们的心理健康有什么影响？自闭症和非自闭症研究人员对自闭症成年人（n = 44），自闭症儿童的父母（n = 84），包括自闭症父母和自闭症年轻人（n = 16）进行了144次半结构化访谈。我们采用专题分析来确定关键主题。随着大流行而加剧的社会隔离对自闭症患者的心理健康和主观幸福感产生了严重和破坏性的影响。他们谈到了对朋友的强烈思念和更多偶然形式的社会联系。他们还报告对以在线/电话为基础的替代方式取代保健服务中具体的、面对面的联系表示强烈不满，这种替代方式有时会带来严重的负面后果。这些发现揭示了支持自闭症患者在大流行期间和之后保持直接和偶然的社会接触的根本重要性。他们反对现有的理论，这些理论淡化了自闭症患者对人际交往的需求，以及他们在封锁期间受到社会隔离影响的程度。在这项研究中，我们发现自闭症患者及其家人发现在COVID-19大流行期间很难应对封锁。自闭症和非自闭症研究人员采访了144人，其中包括44名自闭症成年人，84名自闭症儿童的父母和16名自闭症年轻人（12-18岁）。我们询问了他们在封锁期间的日常生活和心理健康状况。人们告诉我们，与covid -19前的生活相比，他们享受较少的义务和要求。他们觉得生活变得更加安静和平静了。但人们也一次又一次地告诉我们，他们多么想念在现实生活中见到的人，尤其是他们的朋友、治疗师和支持人员。人们告诉我们，他们的心理健康受到影响，因为他们没有与朋友和服务机构接触。重要的是，许多人（包括研究人员）认为自闭症患者不希望朋友或周围的人。但我们的研究结果表明，事实并非如此。许多自闭症患者确实想要朋友，想和其他人在一起。一些人的心理健康因在COVID-19期间无法与人见面而受到损害。自闭症患者在生活的许多方面都需要支持，这样他们才能继续社交，即使在困难时期，比如流行病时期，也能见到朋友。
The COVID-19 pandemic and its policy responses have had a detrimental effect on millions of people's mental health. Here, we investigate its impact on autistic people and their families using qualitative methods. Specifically, we addressed: how did autistic people experience an increase in social isolation during the initial lockdown? And how was their mental health impacted by lockdown? Autistic and non-autistic researchers conducted 144 semi-structured interviews with autistic adults (n = 44), parents of autistic children (n = 84) including autistic parents and autistic young people (n = 16). We deployed thematic analysis to identify key themes. The enhanced social isolation accompanying the pandemic had a serious and damaging impact on autistic people's mental health and subjective wellbeing. They spoke of intensely missing friends and more incidental forms of social connection. They also reported intense dissatisfaction with the substitution of embodied, person-to-person connection in health services by online/telephone-based alternatives, sometimes accompanied by serious negative consequences. These findings reveal the fundamental importance of supporting autistic people to maintain direct and incidental social contact during the pandemic and beyond. They speak against established theories that downplay autistic people's need for human connection and the extent to which they have been affected by social isolation during lockdowns. Lay abstract In this study, we show that autistic people and their families have found it very difficult to deal with the lockdowns during the COVID-19 pandemic. Autistic and non-autistic researchers spoke to 144 people, including 44 autistic adults, 84 parents of autistic children and 16 autistic young people (12-18 years old). We asked them about their everyday lives and mental health during lockdown. People told us that they enjoyed having fewer obligations and demands compared to pre-COVID-19 life. They felt that life was quieter and calmer. But people also told us again and again how much they missed meeting people in real life, especially their friends, and their therapists and support workers. People told us that their mental health suffered because they did not have contact with their friends and services. Importantly, many people (including researchers) think that autistic people do not want friends or to be around people. But our results show that is not true. Many autistic people do want friends and to be around other people. Some people's mental health has been damaged by not being able to see people during COVID-19. Autistic people need support in many areas of life so they can keep socialising and seeing their friends even through difficult times, like pandemics.