Factors related to quality of life in caregivers of children with autism spectrum disorder: emphasizing challenges in the context of Eastern China.

BACKGROUND: Caregivers of children with autism spectrum disorder (ASD) encounter multiple challenges, increasing their risk of experiencing a low quality of life (QOL). Therefore, this study aims to examine the QOL among caregivers of children with ASD in eastern China and to identify the associated factors across many aspects. METHODS: A cross-sectional study was conducted across five institutions in Lianyungang, Jiangsu Province, eastern China. A self-administered questionnaire included child characteristics, caregiver characteristics, the World Health Organization Quality of Life 8 questions (WHOQOL-8), the Insomnia Severity Index (ISI), the Parenting Stress Index-Short Form (PSI-SF), the Family APGAR index (APGAR), and the medical service quality questionnaire were used to collect data. Multiple linear regression models were used to identify factors associated with QOL among caregivers of children with ASD. RESULTS: Overall, 405 caregivers of children with ASD participated in the study. The mean QOL score was 26.09 ± 5.03, with a median score of 26.00 (23.00, 30.00). Multiple linear regression analysis revealed that lower QOL was significantly associated with being a mother (β = -1.704, 95% CI: -2.796 - -0.612; P < 0.05), resided in rural areas (β = -0.941, 95% CI: -1.775 - -0.108; P < 0.05), higher insomnia symptoms (β = -0.256, 95% CI: -0.327 - -0.184; P < 0.001), and higher parenting stress (β = -0.089, 95% CI: -0.127 - -0.051; P < 0.001). However, caregivers with at least a high school education (β = 1.539, 95% CI: 0.696-2.382; P < 0.001), reported no chronic disease (β = 2.169, 95% CI: 0.449-3.889; P < 0.05), experienced good family function (β = 0.296, 95% CI: 0.150-0.442; P < 0.001), and perceived high quality of medical services (β = 0.264, 95% CI: 0.086-0.442; P < 0.05) exhibited significantly higher QOL. CONCLUSIONS: The findings highlighted that the QOL in caregivers of children with ASD was lower, and more attention needed to be paid to caregivers who were mothers, lived in rural areas, had an education level of junior high school or below, and had chronic diseases. In addition, it was necessary to develop coping strategies to address insomnia symptoms, parenting stress, family function, and medical service quality.