The level and factors associated with caregiver experience among parents of children with cerebral palsy: a cross-sectional study in Southwest China

Background Disability is a global public health issue, affecting one in seven people worldwide. In China, there are about 5 million children under 14 years of age with cerebral palsy and about 40,000 new individuals occur every year. Previous studies have revealed that the caregivers of children with cerebral palsy were more likely to perceive a greater burden compared with caregivers of typically developing children. However, there is a lack of information available on the care burden experienced by parents of children with cerebral palsy in China. Objectives This study was conducted to determine the level of care burden and its related factors in the parents of children with cerebral palsy. Methods This descriptive cross-sectional study was conducted with parents of 165 children with cerebral palsy who were enrolled in children rehabilitation departments of three tertiary hospitals between September 2021 and December 2022. Besides demographic information, the Caregiver Burden Inventory, the Patient Health Questionaire-9, and the Fatigue Severity Scale were used to collect data. Data were analyzed by descriptive and inferential statistics (correlation and multiple linear regression analysis). Results The mean (±SD) Caregiver Burden Inventory score of the parents was 42.18 ± 18.79. The score of Fatigue Severity Scale and Patient Health Questionaire-9 demonstrated positive moderate to strong correlations with caregiver burden ( r = 0.461, p 0.001; r = 0.630, p 0.001, respectively). The results of the multiple linear regression analysis showed that a low level of education, long caring time combined with visual impairment, higher depression, and fatigue had an influence on caregiver burden, and 46.4% of the variance in caregiver burden was explained by these factors. Discussion The key predictors of caregiver burden include the level of education, caring time, children with visual impairment, and the degree of depression and fatigue. Efforts should be made to relieve the burden on parents of children with cerebral palsy.