Quality of Life and Child's Autism-Specific Difficulties among Malaysian Main Caregivers: A Cross-Sectional Study

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.