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Previous issue date: 2018-02-22 / Coordena??o de Aperfei?oamento de Pessoal de N?vel Superior - CAPES / Study qualitative, exploratory, with the objective of understanding the experiences of families of children with microcephaly by Zika virus. For the production of empirical data we explore the narratives of relatives contained in videos posted on the YouTube Internet platform published between 10/01/2015 and 07/31/2016, as well as narratives obtained from an in-depth interview, of the story-theme design applied in 11 family members of children with microcephaly attended at the Association of Parents and Friends of the Exceptional in Feira de Santana, as well as field diary material. The data collection took place between September and November 2017. For the treatment of the data we adopted the thematic content analysis and the iconographic analysis. The results are organized in: Article 1 - Bad news: experiences and feelings of families regarding the diagnosis of microcephaly by Zika virus; A session entitled: Understanding the family dynamics of study participants; Article 2 - "Well run, very fast ...": experiences of care of mothers of children with microcephaly by Zika; Article 3 - Family organization to take care of the child with microcephaly by z?ka virus. Microcephaly is revealed in the prenatal period, through imaging tests, or during the immediate or late postpartum. Relatives live with feelings of sadness, despair, pain, fright, commotion, disorientation and terror. After diagnosis, family members seek to understand microcephaly through internet resources, and question God's permission and the relevance of scientific knowledge. Mothers experience day-to-day organizing and cleaning the home environment, caring for their children and the specific care of the child with microcephaly, regarding lullaby, since children cry frequently, requiring the mother to spend hours with the child in the lap; Give a shower; change diapers; to feed; play; and, stimulate. They learn to differentiate cognitive, psychomotor, auditory, and visual impairments; recognize progress in the development and new needs of children; identify episodes of seizure; consider patience and attention relevant to care; and, seek to learn about new thematic and unknown terms such as calcifications. Family members build a network of solidarity and unity for the benefit of the child, family relationships are strengthened, bringing together previously conflicting relationships. Caregivers include mothers, fathers, grandparents, sisters, cousins, aunts, friends and neighbors, with the mother being the protagonist who also coordinates and defines the roles played by other people. Family members practice care that has been organized in four dimensions: "Take care"; Encourage; Access Resources and Services. We recommend that family members and health workers attend to the restriction of social interaction, weakening marital relationships, jealousy behaviors on the part of siblings, worsening of grandparents' health conditions, and financial difficulties that may affect the family of children with microcephaly. / Estudo qualitativo, do tipo explorat?rio, com objetivo de compreender as experi?ncias de fam?lias de crian?as com microcefalia por Zika v?rus. Para produ??o de dados emp?ricos exploramos as narrativas de familiares contidas em v?deos postados na plataforma virtual da internet YouTube publicados entre 01/10/2015 e 31/07/2016, e tamb?m narrativas obtidas de entrevista em profundidade, do desenho est?ria-tema aplicados em 11 familiares de crian?as com microcefalia atendidos na Associa??o de Pais e Amigos dos Excepcionais em Feira de Santana, al?m de material do di?rio de campo. A coleta de dados ocorreu entre setembro a novembro de 2017. Para tratamento dos dados adotamos a an?lise de conte?do tem?tica e a an?lise iconogr?fica. Os resultados encontram-se organizados em: Artigo 1 ? M?s not?cias: experi?ncias e sentimentos de fam?lias face o diagn?stico de microcefalia por Zika v?rus; Uma se??o intitulada: Compreendendo a din?mica familiar dos participantes do estudo; Artigo 2 ? ?Bem corrido, muito corrido...?: experi?ncias de cuidado de m?es de crian?as com microcefalia por Zika; Artigo 3 ? Organiza??o familiar para cuidar da crian?a com microcefalia por z?ka v?rus. A microcefalia ? revelada no per?odo pr?-natal, atrav?s de exames de imagens, ou durante o p?s-parto imediato ou tardio. Os familiares convivem com sentimentos de tristeza, desespero, dor, susto, como??o, desorienta??o e terror. Ap?s o diagn?stico, os familiares buscam compreender a microcefalia atrav?s dos recursos da internet, e questionam a permiss?o de Deus e a relev?ncia do conhecimento cient?fico. As m?es experienciam o dia a dia organizando e limpando o ambiente dom?stico, exercendo os cuidados aos filhos e o cuidado espec?fico ? crian?a com microcefalia, referentes a: ninar, pois as crian?as choram com frequ?ncia, necessitando que a m?e passe horas com a crian?a no colo; dar banho; trocar fralda; alimentar; brincar; e, estimular. Elas aprendem a diferenciar as defici?ncias cognitivas, psicomotoras, auditivas e visuais; reconhecem os avan?os no desenvolvimento e as novas necessidades das crian?as; identificam epis?dios de convuls?o; consideram a paci?ncia e a aten??o relevantes para o cuidado; e, buscam apreender sobre novas tem?ticas e termos desconhecidos como calcifica??es. Os familiares constroem uma rede de solidariedade e uni?o em prol da crian?a, as rela??es familiares s?o fortalecidas, aproximando rela??es antes conflituosas. Participam do cuidado as m?es, pais, av?s, irm?s (os), primos (as), tias (os), amigas e vizinhas, havendo protagonismo da m?e que tamb?m coordena e define os papeis desempenhados pelas outras pessoas. Os familiares exercem cuidados que foram organizados em quatro dimens?es: Cuidar Integralmente; ?Tomar Conta?; Estimular; Acessar Recursos e Servi?os. Recomendamos que os familiares e trabalhadores da sa?de atentem para a restri??o do conv?vio social, enfraquecimento das rela??es conjugais, comportamentos que indiquem ci?mes por parte dos irm?os, agravamento das condi??es de sa?de das av?s e dificuldades financeiras que podem repercutir na fam?lia de crian?as com microcefalia.
| Identifer | oai:union.ndltd.org:IBICT/oai:tede2.uefs.br:8080:tede/680 |
| Date | 22 February 2018 |
| Creators | Vale, Paulo Roberto Lima Falc?o do |
| Contributors | Carvalho, Evanilda Souza de Santana |
| Publisher | Universidade Estadual de Feira de Santana, Mestrado Acad?mico em Sa?de Coletiva, UEFS, Brasil, DEPARTAMENTO DE SA?DE |
| Source Sets | IBICT Brazilian ETDs |
| Language | Portuguese |
| Detected Language | English |
| Type | info:eu-repo/semantics/publishedVersion, info:eu-repo/semantics/masterThesis |
| Format | application/pdf |
| Source | reponame:Biblioteca Digital de Teses e Dissertações da UEFS, instname:Universidade Estadual de Feira de Santana, instacron:UEFS |
| Rights | info:eu-repo/semantics/openAccess |
| Relation | -121975901865722803, 600, 600, 600, 600, 8549511740116106200, 3112649244584600979, 2075167498588264571 |
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