Abstract
BACKGROUND: Congenital disorders are a significant public health concern and a leading cause of infant mortality and morbidity, causing a substantial burden to the family caregivers. Various psychosocial factors have been shown to be associated with caregiver burden across different populations, yet their associations are less studied among caregivers of children with congenital disorders. Thus, this study aimed to describe caregiver burden and psychosocial characteristics of caregivers of children with congenital disorders compared with healthy children's caregivers and to explore factors associated with caregiver burden of children with congenital disorders. METHODS: A comparative cross-sectional study was conducted in three cities that represent high, medium, and low socioeconomic development in Hunan Province from January to December 2021. 194 caregivers of children with congenital disorders and 194 caregivers of healthy children were matched based on the family residence and the age. Sociodemographic information, caregiver burden, depressive symptoms, anxiety symptoms, perceived discrimination, social support, and family resilience were collected by a series of standardized scales and researcher-designed questionnaires. Multiple linear regression analysis was applied to identify factors associated with caregiver burden of children with congenital disorders. RESULTS: Compared with healthy children's caregivers, caregivers of children with congenital disorders were more likely to have moderate-to-severe (19.6% vs. 14.9%) and severe (3.6% vs. 0.5%) burden, depressive symptoms (20.1% vs. 10.8%), and anxiety symptoms (23.7% vs. 11.9%). In addition, the following factors were independently associated with higher levels of caregiver burden among caregivers of children with congenital disorders: having resigned from work for childcare (β = 7.795, p = 0.002), anxiety symptoms (β = 11.285, p = 0.001), perceived discrimination (β = 4.645, p < 0.001), and low levels of family resilience (β=-0.196, p = 0.043). CONCLUSIONS: This study showed that caregivers of children with congenital disorders had a higher caregiver burden than healthy children's caregivers, which was associated with multiple psychosocial factors. The findings provide helpful guidance for future intervention programs to address caregiver burden by improving psychosocial factors such as strengthening family resilience, decreasing anxiety symptoms, and developing anti-discrimination activities. CLINICAL TRIAL NUMBER: Not applicable.