Social capital and quality of life among caregivers of children with Autism Spectrum Disorder in Mongolia: a cross-sectional study

蒙古自闭症谱系障碍儿童照护者的社会资本与生活质量:一项横断面研究

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Abstract

BACKGROUND: Caregivers of children with Autism Spectrum Disorder (ASD) tend to experience a low quality of life (QoL) due to caregiving burdens. Supporting these caregivers, social capital is expected to improve their overall well-being. However, there is limited research on the relationship between social capital and QoL among caregivers of children with ASD in low- and middle-income countries. This study explored this association in the context of caregivers of children with ASD in Mongolia. METHODS: This study conducted a cross-sectional online survey using a structured questionnaire. Caregivers with a child diagnosed with ASD were recruited through institutions related to ASD in Mongolia. Social capital was assessed by the Looman Social Capital Scale. QoL was assessed using the 26-item World Health Organization Quality of Life instrument. The association between social capital and QoL was identified by using multiple linear regression analysis. RESULTS: Among 216 caregivers, the majority of them were mothers (87.1%), married (88.0%), and had higher education (84.3%). Over half of the children (59.7%) were between 0-4 years old, and 24.5% of the total children were girls. Having a better social capital score was positively associated with psychological well-being (B = 0.57, 95% CI [confidence interval] 0.29 to 0.85), social relationship (B = 0.58, 95% CI 0.17 to 0.99), and environmental support (B = 0.70, 95% CI 0.37 to 1.02) domains of QoL. No evidence was found on the association between social capital and the physical health domain of QoL. Among the four domains of QoL, environmental support had the lowest score (mean: 36.5, standard deviation: 13.9). CONCLUSIONS: This study is the first to explore the association between social capital and QoL among caregivers of children with ASD in low- and middle-income countries. Social capital was positively associated with three QoL domains, excluding the physical domain, with caregivers-mostly mothers-scoring the lowest in environmental support. Their social capital and QoL scores were lower than those in previous studies. To address these issues, resource-limited countries should implement community-level initiatives, such as peer support groups, alongside developing healthcare systems and social welfare programs tailored for caregivers and children with ASD.

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