自闭症儿童家庭生活质量评估

Vladimir Ilic, Sasa Stepanovic
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摘要

孩子的发展模式不典型,会遇到很多困难,作为孩子的父母,必须承担起孩子服务的倡导者和协调者的角色,从而限制了个人成就感的发挥。本研究旨在确定发育正常儿童的父母与自闭症儿童的父母在生活质量方面是否存在差异。此外,研究还旨在探讨父母对为人父母的满意度以及父母的压力体验。这项研究包括 90 个家庭,其中 45 个家庭有发育正常的儿童,45 个家庭有被诊断患有自闭症的儿童。为便于数据收集,研究人员设计了一份综合问卷,收集基本信息。此外,还采用了两个量表,即家长满意度量表和家长压力量表,来评估家长的观点。通过非参数分组比较技术得出的结果证实,自闭症儿童家长的压力明显增加。此外,在家长满意度的主要领域中也发现了值得注意的差异。本次调查还发现了一项前所未有的发现,即长子和独生子女患有自闭症的父母普遍倾向于再怀一个孩子,其动机是担心自闭症复发,以及担心自己是否有能力对自闭症儿童给予足够的关注。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Assessment of the Quality of Life of Families of Children With Autism
Being a parent of a child who exhibits atypical developmental patterns and encounters numerous difficulties necessitates parents to assume the roles of advocates and coordinators for their child’s services, thereby limiting the scope for personal fulfillment. This research endeavors to ascertain whether disparities exist in the quality of life between parents of typically developing children and parents of children with autism. Additionally, it aims to explore parental satisfaction with parenthood and the experience of parental stress. The study encompassed a cohort of 90 families, comprising 45 families with typically developing children and 45 families with children diagnosed with autism. To facilitate data collection, a comprehensive questionnaire was devised, capturing fundamental information. Furthermore, two scales, namely the Parental Satisfaction Scale and the Parental Stress Scale, were employed to assess parental perspectives. The results, obtained through nonparametric group comparison techniques, substantiate a significantly heightened level of parental stress among parents of children with autism. Moreover, noteworthy discrepancies were observed across essential domains of parental satisfaction. An unprecedented finding arising from this investigation, not documented in extant literature, pertains to the prevalent inclination of parents whose firstborn and solitary child has autism to conceive another child, motivated by apprehensions of autism recurrence and concerns surrounding their capacity to devote sufficient attention to a child with autism.
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