"Microcefalia não é o fim" : experiência de famílias no contexto da condição crônica

• Ano de defesa: 2019
• Autor(a) principal: Cruz, Gênesis Vivianne Soares Ferreira
• Tipo de documento: Tese
• Tipo de acesso: Acesso aberto
• Idioma: por
• Instituição de defesa: Universidade Federal de Mato Grosso; Brasil; Faculdade de Enfermagem (FAEN); UFMT CUC - Cuiabá; Programa de Pós-Graduação em Enfermagem
• Palavras-chave em Português: Experiência; Zika vírus; Microcefalia; Condição crônica; Deficiência; Ética do cuidado; CNPQ::CIENCIAS DA SAUDE::ENFERMAGEM; Experience; Zika virus; Microcephaly; Chronic condition; Disability; Ethics of care
• Link de acesso: http://ri.ufmt.br/handle/1/3220

ABSTRACT: Microcephaly is one of the most cited and commonly described structural manifestations in Congenital Zika Virus Syndrome, being evidenced by the marked decrease in the head circumference and located within the International Classification of Functioning (ICF) due to possible deficiencies resulting from it. The birth of children with microcephaly has impacted various sectors of society, generating concern in national and international territory through news broadly published in the media (newspapers, television, internet, among others). The present study sought to understand the experience of different people and families regarding the problem (pregnant women, pregnant women diagnosed, their spouses and relatives of affected children). This is a qualitative research with a comprehensive approach, inspired by concepts of Phenomenology and Sociology of Daily Life, conducted in the cities of Cuiabá and Várzea Grande, in which observation techniques, discussion groups and individual interviews were used to produce data, from January 2017 to April 2019, involving 31 interviewees (men and women). The data produced were treated by content analysis in the thematic modality, searching the meaning cores and the meanings of the reports. This research is approved by the Research Ethics Committee (CEP) by number 1,842,018. The experience in everyday life could be understood as the result of multiple sedimented and condensed experiences in particular and shared meanings. Thus, the knowledge and diagnostic impressions are elements that are part of the experience and are circulating in everyday life, serving each person as an interpretative scheme, disseminated in interactions and also provided by health professionals. The anticipated symbolic elements about microcephaly, mobilized even before birth, participate in the construction of the experience itself, mediating the expectations and conditions of the future and adjusting certain parameters to live with and despite the grievance. Family experience was marked by repercussions on the family: greater social vulnerability, increased health maintenance costs, impoverishment and family rearrangements; and about women and children: exhaustive routine, conditions that lead to children's dependence on continuous care, women's responsibility for family care and visible marks of care. From the routines of care, reflection was made on the moral implications for child care, such as the predominant attribution of care as a relegated work to women (and not men) and which socially expresses the unequal and unfair distribution of care. Another point of discussion in this context relates to the ethics of care, whose reflective prism reveals the importance of caring for the caregiver, providing the basis and motivation to meet the well-being of those who care. In this sense, it was necessary to pay attention to the most invisible relations and practices, which brought to light the needs of caregivers who are often socially and historically devalued, as well as hidden in the family and excluded from public policies. To advance social guarantees aimed at equity and justice, it is necessary to discuss the unequal distribution of care activities in society, which is also expressed by gender inequality. Care - its demands and the multiple dimensions of care, then need to be taken more broadly within the scope of public policy to be (re) designed and implemented by the state, rather than being naturalized and relegated to the field of invisibility. of neglect and the private sphere.