Evolução da qualidade de vida de mães de crianças com síndrome congênita de Zika

Abstract

Children with Congenital Zika Syndrome (SCZ) have severe neuropsychomotor impairment, which requires care in interruptions. Usually mothers are the most involved in this process; many abandon their jobs, reduce leisure and social activities to dedicate themselves exclusively to the needs of the dependent child. The in-depth knowledge about the quality of life of these mothers favors the creation of public policies and directs them as processes of a multidisciplinary team. There are currently few studies on this topic, only two of which are from the same author. This dissertation was constructed in the format of a scientific article, the first being a cross-sectional analytical study, with the objective of relating sociodemographic and clinical aspects to the quality of life of mothers of children with SCZ according to the second, and the second, longitudinal and observational, aimed to compare the quality of life of mothers of children with SCZ before and during a COVID-19 pandemic. In both articles, the Quality of Life of the World Health Organization (WHOQOL-Bref) and the sociodemographic and clinical questionnaires of mothers and children, used by the researchers, were used. The initial sample consisted of 30 mothers of children diagnosed with SCZ who were placed in a rehabilitation center in Goiânia - Goiás and after 18 months, 23 mothers were reevaluated. In the first data collection, all children obey the face-to-face multiprofessional follow-up at the institution, but due to the pandemic by COVID-19, in the second collection, only 34.8% were in person (the remainder was by call center).Data analysis was performed using Mann-Whitney tests; Kruskal-Wallis, followed by Dunnett's Posthoc; and Spearman's correlation. The second collection of the analysis was carried out through the Shapiro-Wilk tests, a comparison of quality of life (WHOQOL-bref) was carried out before and during the pandemic was carried out using the paired t test. The results of the analytical cross-sectional article showed that the mothers' average age was 30.57 ± 6.67 years, most had completed high school (60.0%), had a family income below two minimum wages, including government benefit (56.7%), used buses as a means of transport (56.7%), had more than one child, in addition to the child with SCZ (66.6%) and had no partner (56.7%). Half had leisure activities such as walks (50.0%); and a minority took turns taking care of the child with other people (36.7%). As for quality of life, the social (68.3 ± 21.3) and physical (68.0 ± 18.6) domains showed better averages and the environment (51.6 ± 17.1) domain the worst. Mothers who did not have a partner, without leisure activities, who used buses as a means of transport and who had children without microcephaly had a worse quality of life. The results of the longitudinal article showed that after 18 months there 9 was an increase of 4.1% of working mothers, 8.7% in the relay of care, 13% in the use of the car as a means of transport, 13.1% in adherence to a plan health care for children and 0.32 salaries in family income, but with a reduction of 8.7% in the receipt of social benefits; there was a reduction of 17.4% in leisure activities and 4.3% in the performance of psychological therapy by mothers. There was no difference in the mothers' quality of life when comparing before and during the pandemic period; and the environment domain remained more committed. In view of these results, this study may serve as subsidies that demonstrate the need to reformulate existing public policies for this population, with the aim of improving the quality of life and decreasing the likelihood of psychological problems. This study adopted the entire population that performed therapies at the referral center for rehabilitation in this region, unlike the studies already published that adopted only a small portion of the population of mothers with children with SCZ