Caregiving Burden And Psychosocial Characteristics Of Caregivers Of Children With Birth Defects In Hunan Province

Objective :(1)To investigate the burden of care,emotional status,level of social support,perceived discrimination and family resilience of caregivers of children with birth defects in Hunan province.(2)To analyze the factors influencing the caregiving burden of caregivers of children with birth defects in Hunan Province,and provide reference for the development of psychosocial intervention strategies for caregivers of children with birth defects and the improvement of the quality of life of children with birth defects and caregivers.Methods: From January 1,2021 to January 31,2022,caregivers of children with birth defects registered in the Birth Defect Information Management System of Hunan Province in Changsha,Yueyang and Huaihua,three cities representing high,medium and low levels of economic development,were selected as the research site.194 caregivers of children with birth defects and 194 caregivers of healthy children who met the inclusion criteria and were willing to participate were surveyed by questionnaire or interview.Specific investigation contents and tools include:(1)The basic information of the samples and families was investigated by using the self-designed "Caregiver and Family Basic Information Questionnaire";(2)The Zairt Burden Interview was used to evaluate the caregiving burden level;(3)The patients’ health questionnaire and the Generalized Anxiety Scale were used to screen the occurrence of depression and anxiety emotional symptoms of the samples.(4)Measuring Dimensions of Perceived Discrimination,Social Support Rating Scale,Family Resilience Questionnaire and Euroqol Five-Dimension Questionnaire were used to evaluate perceived discrimination level,social support level,family resilience level and caregivers’ quality of life.Results:(1)Compared with families of healthy children,the proportion of 2 or more family members participating in care was lower in families of children with birth defects(62.4% vs.18.6%),and the proportion of boys was higher in families of children with birth defects(53.1% vs.66.0%),the differences were statistically significant(P <0.05).(2)Compared with caregivers of healthy children,caregivers of children with birth defects had lower education level,and more caregivers had quit their jobs or taken long vacations to take care of their children(45.9% vs.64.4%),with statistically significant differences(P <0.05).(3)Compared with caregivers of healthy children,caregivers of children with birth defects had a higher proportion of moderate-severe(14.9% vs.19.6%)and several-severe(0.5% vs.3.6%)levels of care burden,and the difference was statistically significant(z=2.031,P<0.05).(4)After screening evaluation of depression and anxiety,39caregivers(20.1%)had depressive symptoms,46 caregivers(23.7%)had anxiety symptoms.Compared with caregivers of healthy children,caregivers of children with birth defects had a higher proportion of depressive symptoms(10.8% vs.20.1%)and anxiety symptoms(11.9% vs.23.7%),and the differences were statistically significant(P <0.05).However,there were no significant differences in perceived discrimination,social support and family resilience between the two groups(ALL P >0.05).(5)Among the caregivers of children with birth defects,the EQ-5D utility value of caregivers with moderate was burden(ZBI>40)lower than that of the caregivers with moderate care burden(0.96±0.05 vs.0.99±0.03,P<0.05).The health self-assessment scores of caregivers with moderate care burden were lower than those with moderate care burden(75.16±17.95 vs.82.23±16.80,P<0.05).(6)Taking the continuous variable ZBI total score as the dependent variable,multivariate regression analysis showed that the caregivers with birth defects who quit their jobs to take care of children had a higher level of caregiving burden(b=7.795,95%CI: 2.994*12.596);Caregivers of children with birth defects with anxiety symptoms perceived higher level of care burden(b=11.285,95%CI: 4.484*18.087);The caregivers with higher perceived discrimination had higher burden level(b=4.645,95%CI:2.258* 7.032).Caregivers with stronger family resilience had a lower level of care burden(b=-0.196,95%CI:-0.386*-0.006).Conclusion:1.About 1/4 of the caregivers of children with birth defects in Hunan province had a caregiving burden above moderate level,significantly higher than that of the caregivers of healthy children.Compared with caregivers of healthy children,caregivers of children with birth defects had higher rates of depressive symptoms and anxiety symptoms.Among the caregivers of children with birth defects,the caregivers with the level of caregiving burden above moderate had higher perceived discrimination,lower level of social support,and weaker family resilience.2.Perceived discrimination due to the presence of a child with birth defects in the family,having quit a job in order to care for the child,and having anxiety symptoms were related to increased burden of caregivers of children with birth defects,while family resilience was related to reduced burden of caregivers of children with birth defects.