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自闭症谱系障碍儿童的兄弟姐妹的经历。

Experiences of siblings to children with autism spectrum disorder.

作者信息

Mokoena Naledi, Kern Anwynne

机构信息

Department of Psychology, School of Human and Community Development, University of the Witwatersrand, Johannesburg, South Africa.

出版信息

Front Psychiatry. 2022 Jul 25;13:959117. doi: 10.3389/fpsyt.2022.959117. eCollection 2022.

Abstract

Autism spectrum disorder (ASD) is prevalent globally resulting in increased awareness and understanding of the disorder internationally and to a lesser extent in Southern African countries. This understanding has predominantly been in relation to the impact of the disorder on the neurodivergent child and family relations. Internationally, limited research has explored the impact on neurotypical siblings who have been raised alongside children diagnosed with ASD, with a dearth of such studies emerging from the South African context. The importance of neurotypical siblings' developmental experiences emerging from their immediate environment is significant within the traditionally collectivist nation of South Africa. For this reason, this study aimed to explore South African neurotypical siblings' experiences of living with a brother or sister diagnosed with ASD; through a qualitative study adopting an interpretative phenomenological design. Semi-structured interviews, aimed at generating demographic data and exploring the experiences of being raised alongside a sibling diagnosed with ASD, were conducted with eight university students. The data generated were analyzed employing the five stages of interpretive phenomenological analysis approach. Themes of emotional burden, perceived family dynamics, acceptance, and identity development emerged through data analysis. The participants reported experiences of pre-mature development, unfair treatment, and feelings of being overburdened, along with reported efforts toward acceptance of their sibling's diagnosis, and support from community members. Consequently, an understanding that their neurodivergent sibling played a key role in the development of their identities and career trajectories emerged. The impact of being raised alongside a sibling diagnosed with ASD highlights the need for additional support for neurotypical individuals, supported by programs to enhance awareness about ASD in the general South African community. These interventions would be aimed at mitigating the impact of heightened childhood stress, stigmatization, and marginalization.

摘要

自闭症谱系障碍(ASD)在全球范围内普遍存在,这使得国际上对该疾病的认识和理解有所提高,而在南部非洲国家,这种认识的程度相对较低。这种认识主要涉及该疾病对神经发育异常儿童及其家庭关系的影响。在国际上,有限的研究探讨了与被诊断患有ASD的儿童一起长大的神经发育正常的兄弟姐妹所受到的影响,而南非背景下这类研究则很少。在传统上奉行集体主义的南非,神经发育正常的兄弟姐妹从其直接环境中获得的发展经历的重要性是显著的。因此,本研究旨在通过采用解释现象学设计的定性研究,探索南非神经发育正常的兄弟姐妹与被诊断患有ASD的兄弟姐妹一起生活的经历。对八名大学生进行了半结构化访谈,旨在收集人口统计数据并探索与被诊断患有ASD的兄弟姐妹一起长大的经历。所收集的数据采用解释现象学分析方法的五个阶段进行分析。通过数据分析得出了情感负担、感知到的家庭动态、接纳和身份发展等主题。参与者报告了过早发育、不公平对待和负担过重的感受,以及为接受其兄弟姐妹的诊断所做的努力,还有来自社区成员的支持。因此,出现了一种认识,即他们患有神经发育障碍的兄弟姐妹在他们的身份和职业轨迹发展中发挥了关键作用。与被诊断患有ASD的兄弟姐妹一起长大所产生的影响凸显了为神经发育正常的个体提供额外支持的必要性,这种支持由提高南非普通社区对ASD认识的项目提供。这些干预措施旨在减轻童年时期压力增加、污名化和边缘化的影响。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5a3f/9364443/8b52714363e0/fpsyt-13-959117-g001.jpg

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