Abstract
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.
Highlights
Autism spectrum disorder (ASD) is a lifelong neurodevelopmental disorder characterized by a chronic condition exhibiting deficits in social interaction and communication, restricted repetitive behavioural patterns, interests, and activities in the beginning of childhood [1]
This cross-sectional study collected the data from main caregivers with children with ASD who send their children to the non-governmental organization (NGO) early intervention childcare centres in Selangor and in Kuala Lumpur, Malaysia
We investigated the level of quality of life (QoL) among the main caregivers of children with ASD attending NGO autism interventional centres in Selangor and Kuala Lumpur, Malaysia using the Quality of Life in Autism (QoLA) autism-specific questionnaire
Summary
Autism spectrum disorder (ASD) is a lifelong neurodevelopmental disorder characterized by a chronic condition exhibiting deficits in social interaction and communication, restricted repetitive behavioural patterns, interests, and activities in the beginning of childhood [1]. The United States of America observed an increasing prevalence of ASD among. ASD within the Asia Pacific region are limited to Japan and China, with an estimated median prevalence value of 11.6 in 10,000 [4]. Due to the limited data availability and the small sample size of these studies, the true prevalence of children with ASD in Asia is not known. Within the local setting, the lack of an ASD registry limits the knowledge of prevalence. The number of children with ASD enrolling in early intervention training centres in Malaysia is increasing. The National Autism Society of Malaysia (NASOM), which is the largest local NGO-based autism training centre in Malaysia, reported an increased percentage of children with ASD enrolling in their centre of 30% in 2009 [5]
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