Fridell Anna, Norrman Hjalmar Nobel, Girke Linda, Bölte Sven
Center of Neurodevelopmental Disorders (KIND), Centre for Psychiatry Research, Department of Women's and Children's Health, Karolinska Institutet & Stockholm Health Care Services, Region Stockholm, 113 30 Stockholm, Sweden.
Child and Adolescent Psychiatry, Stockholm Health Care Services, Region Stockholm,118 61 Stockholm, Sweden.
Int J Environ Res Public Health. 2022 Jan 24;19(3):1268. doi: 10.3390/ijerph19031268.
While the COVID-19 pandemic is ongoing, early outcome studies indicate severe and pervasive global effects of the pandemic and associated measures to prevent the spread of the virus. General population studies, as well as insight into the outcomes for particular groups, will be necessary in order to mitigate potentially long-term effects as well as to prepare for future epidemics or pandemics. The pandemic conditions have been marked by rapid and abrupt changes and unpredictability which are circumstances that leave the autistic population particularly vulnerable to adverse outcomes following the distinctive features of the diagnosis. Studies are only beginning to delineate the outcomes of the global autism community and the present study adds to these findings by providing a local, multi-perspective, qualitative analysis of the lived experiences of the Swedish autism community. In this study, autistic youth and adults, caregivers of autistic individuals, as well as representatives of Swedish interest organizations were interviewed. Thematic analysis was performed on the population as a whole and patterns of results were formalized according to the International Classification of Function, Disability and Health (ICF-CY). Participants report wide-ranging adverse outcomes of the pandemic relating to mental health and access to support, participation in daily activities and socialization, education, and work as well as parental resources. However, participants also report positive outcomes relating to a reduction in specific social and everyday demands, and normalization of lived experiences. Additionally, interviews outlined some strategies used to cope during pandemic conditions. Implications of these findings are discussed.
在新冠疫情仍在持续之际,早期结果研究表明该疫情及相关病毒传播预防措施产生了严重且广泛的全球影响。为了减轻潜在的长期影响并为未来的流行病或大流行做好准备,有必要开展普通人群研究以及深入了解特定群体的情况。疫情状况的特点是变化迅速且突然,具有不可预测性,而这些情况使自闭症群体因其诊断的独特特征而特别容易受到不良后果的影响。相关研究才刚刚开始描绘全球自闭症群体的情况,本研究通过对瑞典自闭症群体的生活经历进行本地、多视角的定性分析,补充了这些研究结果。在本研究中,对自闭症青年和成年人、自闭症患者的照料者以及瑞典相关利益组织的代表进行了访谈。对整个群体进行了主题分析,并根据《国际功能、残疾和健康分类》(儿童版)将结果模式进行了整理。参与者报告了疫情在心理健康、获得支持、参与日常活动和社交、教育、工作以及家长资源等方面产生的广泛不良后果。然而,参与者也报告了一些积极结果,比如特定社会和日常需求的减少以及生活经历的正常化。此外,访谈还概述了在疫情期间采用的一些应对策略。本文讨论了这些研究结果的意义。