Qualidade de vida e sobrecarga de mães de crianças com microcefalia / Quality of life and caregiver burden in mothers of children with microcephaly

Introdução: Devido a infecção congênita, a criança com microcefalia possui grandes limitações de sua condição de saúde. Estas limitações fazem com que a criança necessite de maior atenção de saúde e domiciliar. Geralmente, a mãe torna-se cuidadora principal desta criança, esse papel pode levar a sobrecarga com prejuízos em sua qualidade de vida. Objetivo: Analisar sobrecarga do cuidado e a qualidade de vida de mães ou cuidadoras principais de crianças com microcefalia relacionada à infecção congênita. Método: Estudo transversal, correlacional, realizado com 105 participantes do estado de Sergipe, Brasil, durante o período de outubro de 2017 a abril de 2018, através da aplicação questionários: sociodemográfico, WHOQOL-Bref e Sobrecarga do cuidador. Para análise estatística foram utilizados testes ANOVA, teste t e Person (r). Resultados: A totalidade dos participantes era do sexo feminino, 39 % foram classificadas com sobrecarga severa e 30,5% com sobrecarga intensa. A média total da sobrecarga (49,47) indica classificação de moderada à severa. Houve uma forte associação (p<0,0001) entre os níveis de sobrecarga e os domínios da qualidade de vida, sendo o de maior prejuízo o ambiental (36,57) e o físico (38,53). Foi observada uma correlação significativa e inversamente proporcional (r=-0,547, p<0,0001) entre a qualidade de vida e a sobrecarga do cuidador. Conclusão: As mães sofrem sobrecarga severa e intensa que pode levar a repercussões negativas em sua qualidade de vida. A enfermagem pode contribuir na criação e implementação de linhas de cuidados específicas para estas mulheres com ênfase na promoção da saúde física, mental e melhora da qualidade de vida.

Introducción: Debido a la infección congénita, las niñas y los niños con microcefalia tienen grandes limitaciones en su estado de salud. Estas limitaciones hacen que necesiten más atención sanitaria y domiciliaria. Generalmente, la madre se convierte en la principal cuidadora y este papel puede llevar a la sobrecarga, con perjuicio para su calidad de vida. Objetivo: Analizar la sobrecarga de cuidado y la calidad de vida de las madres o personas cuidadoras primarias de niñas o niños con microcefalia, relacionada con infección congénita. Método: Estudio transversal, correlacional realizado con 105 participantes del estado de Sergipe, Brasil, de octubre de 2017 a abril de 2018, a través de la aplicación de los siguientes cuestionarios: sociodemográfico, el WHOQOL-Bref y escala de sobrecarga del cuidador. Para el análisis estadístico, se utilizaron ANOVA, prueba t y prueba Person (r). Resultados: Población totalmente femenina. El 39 % se clasificó con sobrecarga severa y el 30.5 % con sobrecarga intensa. La sobrecarga media total (49.47) indica una clasificación de moderada a grave. Hubo una fuerte asociación (p<0.0001) entre los niveles de carga y los dominios de la calidad de vida, siendo los mayores daños ambientales (36.57) y físicos (38.53). Se observó una correlación significativa e inversamente proporcional (r=-0.547, p<0.0001) entre la calidad de vida y la sobrecarga de la persona cuidadora cuidador. Conclusión: Las madres sufren una sobrecarga severa e intensa que influye negativamente en su calidad de vida. La enfermería puede contribuir para la creación e implementación de líneas de atención específicas para estas mujeres con énfasis en la promoción de la salud física y mental y la mejora de la calidad de vida.

Introduction: Due to congenital infection, children with microcephaly have great limitations due to this condition. These limitations make the child need more health and home care. Generally, the mother becomes the main caretaker for this child, this role can lead to overload feelings that affect their quality of life. Objective: To analyze the role overload and the quality of life of mothers or primary caregiver of children with microcephaly related to congenital infection. Method: Cross-sectional, correlational study carried out with 105 participants from the state of Sergipe, Brazil, during the period from October 2017 to April 2018, through the application of questionnaires: sociodemographic, WHOQOL-Bref, and caregiver burden. For statistical analysis, ANOVA, t-test, and Pearson (r) tests were used. Results: All of the participants were females, 39 % were classified with severe role overload and 30.5% with intense role overload. The total average of this caregiver burden (49.47) presents a moderate to severe classification. There was a strong correlation (p<0.0001) between the levels of their role overload and the domains of their quality of life, where the greatest damage was in the environmental (36.57) and physical (38.53) aspects. A significant and inversely proportional correlation (r=-0.547, p<0.0001) was observed between the quality of life and the caregiver burden. Conclusion: Mothers suffer severe and intense caregiver overload that has a negative influence on their quality of life. Nursing can contribute to the creation and implementation of specific lines of care for these women emphasizing the promotion of physical and mental health to improve their quality of life.

"Very busy": daily reorganization of mothers to care of children with Congenital Zika Syndrome.

OBJECTIVE: To understand the experiences and care practices of mothers of children with congenital Zika syndrome. METHODS: A qualitative study with collection held in Feira de Santana - Bahia, between September and November 2017, from in-depth interviews and Story-Drawing with 11 family members of children, using thematic content analysis. RESULTS: Mothers take care from experiences with health professionals and groups of mothers. They reorganize themselves in order to optimize time, streamline domestic activities, teach family members, and navigate care spaces. They experience the routine organizing the home, taking care of the children and, specifically, the child with syndrome, referring to: bedtime; giving a shower; changing diapers; feeding; playing; and, stimulating, actions mediated by intense crying and environmental preparation. CONCLUSION: The experiences are unique and exceptional, conforming the social representation of the mothers as a group, the "mothers of micro", an aspect that differs from other experiences.

"Very busy": daily reorganization of mothers to care of children with Congenital Zika Syndrome / "Muy ocupada": reorganización diaria de las madres para cuidar a niños con Síndrome Congénito del Zika / "Bem corrido": reorganização cotidiana das mães para cuidar de crianças com Síndrome Congênita pelo Zika

ABSTRACT Objective: To understand the experiences and care practices of mothers of children with congenital Zika syndrome. Methods: A qualitative study with collection held in Feira de Santana - Bahia, between September and November 2017, from in-depth interviews and Story-Drawing with 11 family members of children, using thematic content analysis. Results: Mothers take care from experiences with health professionals and groups of mothers. They reorganize themselves in order to optimize time, streamline domestic activities, teach family members, and navigate care spaces. They experience the routine organizing the home, taking care of the children and, specifically, the child with syndrome, referring to: bedtime; giving a shower; changing diapers; feeding; playing; and, stimulating, actions mediated by intense crying and environmental preparation. Conclusion: The experiences are unique and exceptional, conforming the social representation of the mothers as a group, the "mothers of micro", an aspect that differs from other experiences.

RESUMEN Objetivo: Comprender las experiencias y prácticas de atención de las madres de niños con síndrome congénito por Zika. Métodos: Estudio cualitativo con recolección de datos realizada en Feira de Santana - Bahía, entre septiembre y noviembre de 2017, a partir de entrevistas en profundidad y Story-Drawing con 11 familiares de niños, utilizando análisis de contenido temático. Resultados: Las madres cuidan a partir de las experiencias con profesionales de la salud y grupos de madres. Se reorganizan para optimizar el tiempo, agilizar las actividades domésticas, enseñar a los integrantes de la familia y navegar por los espacios de atención. Experimentan la rutina organizando el hogar, cuidando a los niños y, específicamente, al niño con síndrome, refiriéndose a: la hora de acostarse; el baño; el cambio de pañales; la comida, los juegos y la estimulación, acciones mediadas por llanto intenso y preparación ambiental. Conclusión: Las experiencias son únicas y excepcionales, conformando así la representación social de las madres como grupo, las "madres de micro", un aspecto que difiere de otras experiencias.

RESUMO Objetivo: Compreender as experiências e práticas de cuidado das mães de crianças com Síndrome Congênita pelo Zika. Métodos: Estudo qualitativo com coleta realizada em Feira de Santana - Bahia, entre setembro e novembro de 2017, a partir de entrevistas em profundidade e Desenho Estória-Tema com 11 familiares das crianças, utilizando a análise de conteúdo temática. Resultados: As mães cuidam a partir das experiências com profissionais de saúde e grupos de mães. Elas se reorganizam para otimizar o tempo, agilizar as atividades domésticas, ensinar aos familiares e percorrer os espaços de cuidado. Experienciam a rotina organizando o domicílio, cuidando dos filhos e, especificamente, da criança com síndrome, referentes à: ninar; dar banho; trocar fraldas; alimentar; brincar; e, estimular, ações mediadas por choro intenso e preparação do ambiente. Conclusão: As experiências são únicas e singulares, conformando a representação social das mães enquanto grupo, as "mães de micro", aspecto que difere de outras experiências.

Depressive Symptoms and Care Demands Among Primary Caregivers of Young Children with Evidence of Congenital Zika Virus Infection in Brazil.

OBJECTIVE: Evidence suggests that caring for a child with special health care needs can affect many domains of family life, including caregiver mental health. However, few studies have examined these outcomes among families impacted by the Zika virus (ZIKV). This study examines depressive symptom severity and care demands among primary caregivers of children, aged 15 to 26 months, with evidence of congenital Zika virus infection (ZVI). METHODS: A sample of primary caregivers of children with evidence of congenital ZVI in northeastern Brazil (n = 150) reported on depressive symptoms, care demands, and their children's development. Children were categorized into groups according to their developmental delay status. Bivariate analyses were run to test for differences between groups. A path analysis model was used to examine the indirect effects of developmental delay on depressive symptoms through economic challenges and time spent providing health care at home and whether these associations varied by child care support. RESULTS: Compared to primary caregivers of children without developmental delay, primary caregivers of children with developmental delay had higher depression scores (p = 0.002), reported more economic (p < 0.001) and child care (p < 0.001) challenges, and spent more time providing health care at home (p < 0.001). Among primary caregivers who did not have child care support, developmental delay had a significant indirect effect on depressive symptoms through economic challenges but not through time spent providing health care at home. CONCLUSION: For families impacted by the ZIKV outbreak in Brazil, economic and child care challenges may be associated with primary caregiver mental health.

One in Seven Babies Exposed to Zika Virus In Utero Has Birth Defects.

Nurses play an important role in monitoring the health of these infants.

Nursing on the Zika front line.

Paediatric nurse Roberta Seabra quickly and quietly takes control when the mother of baby Graziella breaks down. Ushering visitors from the room, she reassures Inabela Souza about her six-month-old daughter, who has been born with an abnormally small head and brain - one of 5,000 babies thought to be affected by microcephaly in Brazil.

Application of the M technique to two severely disabled children in Belarus.

Following the early-morning explosion of reactor four at the Chernobyl nuclear plant on 26 April 1986, radioactive fallout fell over 80% of Belarus. More than 2.2 million people were affected, including thousands of children. As a result, there are now over 50,000 children in 600 orphanages in Belarus. Many of the orphanages are without basic amenities and are operating in dire circumstances. This article outlines two case studies of orphaned children with profound disabilities in one of these orphanages. The first author, a nurse volunteer from Ireland, used a method of touch called the 'M technique' to calm and soothe the children. The M technique is a gentle repetitive method of touch that can be learnt in a few hours. The results suggest that even when the situation appears very challenging, simple touch can have a beneficial effect.