在 COVID-19 大流行的前 6 个月,英国自闭症成人的封锁经历和对未来参与研究的看法。

Alba X Realpe, Nicola Mills, Lucy Beasant, Sarah Douglas, Lorcan Kenny, Dheeraj Rai
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摘要

背景:COVID-19 大流行导致许多国家实施了大规模的公共卫生限制和封锁。关于此类封锁对自闭症成人的不同影响的文献越来越多。然而,关于大流行病和相关公共卫生措施如何影响自闭症患者参与和参加研究的意愿的研究却很少。本定性研究旨在探讨成年自闭症患者在 COVID-19 封锁中的经历,以及大流行会如何影响他们未来的研究参与:我们在 2020 年 3 月至 7 月期间对 31 名成年自闭症患者进行了深入访谈。我们在批判现实主义框架内对访谈记录进行了专题分析:结果:参与者发现了封锁的积极方面,如享受没有社会压力的生活,以及利用他们发展成熟的技能应对不确定性。自闭症患者也分享了适应关禁闭所面临的挑战,例如日常生活的快速变化。虽然参与者对放松限制后获得的自由充满希望,但他们也对脱离封锁后的沟通和规则应用不一致表示担忧。这可能会加剧自闭症患者本已加剧的心理健康问题。参与者认为,在大流行病期间,研究的参与和介入更具相关性,并欢迎使用在线交流方式开展研究的努力:COVID-19 封锁对自闭症患者的生活和作息产生了不同程度的影响。然而,医疗服务提供者和研究人员需要注意的是,在大流行过后,心理健康问题会越来越多,尤其是对于那些本来就很脆弱的人来说。大流行的应对措施可能为研究过程的创新提供了机会,使更多的自闭症患者能够参与研究,并使研究更具包容性。
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Lockdown Experiences and Views on Future Research Participation of Autistic Adults in the UK During the First 6 Months of the COVID-19 Pandemic.

Background: The COVID-19 pandemic resulted in large-scale public health restrictions and lockdowns across many countries. There is an increasing literature on the varied impact of such lockdowns in autistic adults. However, there is very little research on how the pandemic and related public health measures may impact the willingness of autistic people in engaging and taking part in research. The aim of this qualitative study was to explore autistic adults' experiences of the COVID-19 lockdown and how the pandemic may affect future research participation.

Methods: We conducted in-depth interviews with 31 autistic adults between March and July 2020. Transcripts were analyzed thematically within a critical realism framework.

Results: Participants identified positive aspects of lockdown such as enjoying the lack of social pressures and using their well-developed skills for dealing with uncertainty. Autistic people also shared challenges of adjusting to lockdown, for example, rapid change in daily routines. While hopeful about the freedom gained from easing restrictions, participants were concerned about the inconsistent communication and application of rules during the transition out of lockdown. This may have exacerbated already rising mental health issues among autistic people. The participants viewed research participation and engagement with increased relevance during the pandemic and welcomed efforts to conduct research using online methods of communication.

Conclusion: The COVID-19 lockdown had a varied effect in the lives and routines of autistic people. However, health care providers and researchers need to be mindful of rising mental health issues in the aftermath of the pandemic, especially for people who were already vulnerable. The response to the pandemic may have offered opportunities for innovation in research processes enabling more autistic people to engage with research and making studies more inclusive.

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