Caring for children with autism spectrum disorder (ASD) negatively impacts quality of life (QoL). This cross-sectional study aimed to determine the factors associated with perceived QoL and how problematic a child’s autism-specific difficulties are among the main caregivers of children with ASD who attend specialized preschool programs at the National Autism Society of Malaysia and IDEAS Autism Centre located in Selangor and Kuala Lumpur. Utilizing the questions from Parts A and B of the Quality of Life in Autism Questionnaire (QoLA), the data from 116 responders were analyzed using univariate and multivariate linear regression. The mean scores of Part A and Part B were 88.55 ± 17.25 and 56.55 ± 12.35, respectively. The QoL was significantly associated with staying in an apartment/flat −11.37 (95%CI: −19.52, −1.17, p = 0.008), main caregivers attending two training sessions 10.35 (95%CI: 1.17, 19.52, p = 0.028), and more than three training sessions 13.36 (95%CI: 2.01, 24.70, p = 0.022). Main caregiver perceptions of their child’s autistic-specific difficulties were significantly associated with not receiving additional help for childcare: no maid −13.54 (95%CI: −24.17, −12.91, p = 0.013); no grandparent −8.65 (95%: −14.33, −2.96, p = 0.003); and main caregivers not having asthma 8.44 (95%CI: 0.02, 16.86, p = 0.049). These identified factors can be considered to inform main caregivers and health care providers on targeted ways to improve the QoL of main caregivers.

中文翻译：

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马来西亚主要看护人的生活质量和自闭症儿童的特殊困难：一项横断面研究

照顾患有自闭症谱系障碍 (ASD) 的儿童会对生活质量 (QoL) 产生负面影响。这项横断面研究旨在确定与感知 QoL 相关的因素，以及在马来西亚国家自闭症协会和位于雪兰莪和吉隆坡。利用孤独症生活质量问卷 (QoLA) 的 A 部分和 B 部分的问题，使用单变量和多变量线性回归分析了 116 名响应者的数据。A 部分和 B 部分的平均分数分别为 88.55 ± 17.25 和 56.55 ± 12.35。QoL 与住在公寓/公寓显着相关 -11.37 (95%CI: -19.52, -1.17, p= 0.008)，主要看护者参加两次培训课程 10.35 (95%CI: 1.17, 19.52, p = 0.028)，以及超过三个培训课程 13.36 (95%CI: 2.01, 24.70, p = 0.022)。主要看护人对其孩子的自闭症特定困难的看法与没有接受额外的儿童看护帮助显着相关：没有女佣 -13.54（95%CI：-24.17，-12.91，p = 0.013）；没有祖父母 -8.65 (95%: -14.33, -2.96, p = 0.003); 和主要照顾者没有哮喘 8.44 (95% CI: 0.02, 16.86, p = 0.049)。可以考虑这些确定的因素，以告知主要照顾者和医疗保健提供者有针对性的方法来提高主要照顾者的 QoL。