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

This study looked at the wellbeing of 405 parents caring for children with autism in China. Parents generally had lower quality of life scores. Mothers, rural families, and those with less education faced greater challenges. Parents with better sleep, less stress, good family support, and quality medical care had better wellbeing. The research shows caring for a child with autism affects parent wellbeing in many ways.

This cross-sectional study examined quality of life (QOL) among 405 caregivers of children with autism spectrum disorder in eastern China. Using standardized measures including WHOQOL-8, researchers identified multiple factors associated with caregiver wellbeing. Lower QOL was significantly associated with being a mother, living in rural areas, experiencing insomnia symptoms, and higher parenting stress. Conversely, higher education levels, absence of chronic disease, good family functioning, and perceived quality medical services were associated with better QOL.

The mean QOL score was 26.09±5.03, suggesting overall lower wellbeing among this caregiver population. Findings highlight the need for targeted interventions addressing insomnia, parenting stress, family functioning, and medical service accessibility.

Results suggest need for targeted support interventions addressing sleep problems, parenting stress, and family functioning. Rural caregivers and mothers may require additional support. Improving medical service quality and accessibility could enhance caregiver wellbeing. Comprehensive assessment of caregiver needs should consider multiple domains identified.

Cross-sectional design prevents causal inferences. Study limited to one geographic region in eastern China, limiting generalizability to other populations and cultures. Self-reported measures may introduce bias. No control group comparison with caregivers of neurotypical children.

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. 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. 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. 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.