Burden in caregivers of children with congenital Zika syndrome in Pernambuco, Brazil: analysis and application of the Zarit burden interview scale

Abstract

With the increase in cases of microcephaly caused by the Zika virus, the demand for special care and a better quality of life for the child and caregiver increased proportionally. Objective This study aimed to analyze the burden on caregivers of children with congenital Zika syndrome associated with viral infections in the state of Pernambuco, Brazil using the Zarit Burden interview scale. Method A quantitative study was conducted at the Oswaldo Cruz University Hospital, Recife City, State of Pernambuco, Brazil. By convenience sampling, 56 mothers, two grandmothers, and two caregivers were enrolled, all are female. Data were collected from July 2019 to January 2020. In the analysis, the percentage frequencies were calculated. The normality was identified using the Kolmogorov–Smirnov test, and participant profiles were compared using Student’s t-test and analysis of variance. In descriptive statistics, quantitative variables are described by the median and interquartile range and categorical variables by proportions using the Chi-square test. Results In the comparative analysis, all factors evaluated were significant, except for the “gestational period in which the disease occurred” (p < 0.111). The significance of differences in all activities was evaluated. In the mean comparison test, only the factor “has a job” was significant (p < 0.043). When comparing the average of caregivers’ responses to the categories of the Zarit burden interview scale, the highest level of burden was regarding the feeling that the child is dependent on the caregiver (3.62 points). Caregiver burden was classified as absence, light, moderate, and high. Conclusion The consequences of contracting the Zika virus in the first trimester of pregnancy, lack of paid work, financial scarcity, full-time dedication to the child, and lack of time for themselves increase the burden on caregivers. Thus, caregivers have mild burden.