Telethon Kids Institute, The University of Western Australia, Australia.
The Royal Children's Hospital Melbourne, Australia.
Autism. 2019 Jan;23(1):71-80. doi: 10.1177/1362361317722764. Epub 2017 Oct 26.
Domains of quality of life in children with autism spectrum disorder have not previously been explored and there has been no quality of life measure developed for this population. Our study investigated parent observations to identify the domains important to children with autism spectrum disorder who also had an intellectual disability. In all, 21 parents (19 mothers, 2 fathers) of children with autism spectrum disorder (aged 6-17 years) participated in a qualitative study to discuss their child's quality of life. Thematic analysis using a grounded theory framework was conducted and 10 domains emerged in relation to health and well-being, capacity to perform and develop skills in daily life, and connections with the community and environment. Unique aspects of quality of life included varying levels of social desire, consistency of routines, and time spent in nature and the outdoors, which are not comprehensively captured in existing measures. Parent observations provide an initial framework for understanding quality of life in autism spectrum disorder and support the development of a new measure for this population.
先前并未探索自闭症谱系障碍儿童的生活质量领域，也没有为此人群开发生活质量衡量标准。我们的研究调查了父母的观察结果，以确定对同时患有智力残疾的自闭症谱系障碍儿童重要的领域。共有 21 名自闭症谱系障碍儿童（年龄 6-17 岁）的父母（19 名母亲，2 名父亲）参与了一项定性研究，讨论他们孩子的生活质量。采用扎根理论框架进行了主题分析，结果出现了与健康和幸福感、在日常生活中执行和发展技能的能力以及与社区和环境的联系相关的 10 个领域。生活质量的独特方面包括不同程度的社交欲望、日常生活中常规的一致性以及在自然和户外度过的时间，这些方面在现有的衡量标准中没有得到全面涵盖。父母的观察结果为理解自闭症谱系障碍中的生活质量提供了初步框架，并支持为此人群开发新的衡量标准。
