Literature DB >> 33302536

"Life Is Taking Me Where I Need to Go": Biographical Disruption and New Arrangements in the Lives of Female Family Carers of Children with Congenital Zika Syndrome in Pernambuco, Brazil.

Ana Paula Lopes de Melo1,2, Tereza Lyra2,3, Thália Velho Barreto de Araújo4, Maria do Socorro Veloso de Albuquerque4, Sandra Valongueiro4, Hannah Kuper5, Loveday Penn-Kekana6.   

Abstract

The congenital Zika syndrome (CZS) epidemic in Brazil turned the spotlight on many other factors beyond illness, such as poverty, gender, and inequalities in health care. Women were the emblematic subjects in this study, not only because Zika virus is a vertical transmission disease, but also because women-in Brazil and elsewhere-typically represent the primary carers of children. This is a qualitative analytic study using semi-structured interviews with 23 female family carers of children with CZS in Brazil. Through the concept of biographical disruption, we analysed some of the social impacts experienced by women involved in caring for affected children. We identified that the arrival of a child with disabilities resulted in biographical disruption similar to that experienced by people with chronic illnesses. Social support networks were configured through an alliance between women from different generations, revealing solidarity networks, but also highlighting the absence of the state in tackling these social vulnerabilities. Tracing the pathways of these biographical narratives enables us to understand how women have acted to defend the value of their disabled children in a society structured on the model of body normativity and inequality. These results may provide clues to a more inclusive society, which confronts systems of gender oppression and the sexual division of labour focused on women.

Entities:  

Keywords:  biographical disruption; congenital Zika syndrome; family caregivers; gender; maternal health

Mesh:

Year:  2020        PMID: 33302536      PMCID: PMC7763975          DOI: 10.3390/v12121410

Source DB:  PubMed          Journal:  Viruses        ISSN: 1999-4915            Impact factor:   5.048


  24 in total

Review 1.  Zika virus during pregnancy: From maternal exposure to congenital Zika virus syndrome.

Authors:  Léo Pomar; Didier Musso; Gustavo Malinger; Manon Vouga; Alice Panchaud; David Baud
Journal:  Prenat Diagn       Date:  2019-04-01       Impact factor: 3.050

2.  Initial Description of the Presumed Congenital Zika Syndrome.

Authors:  Demócrito de Barros Miranda-Filho; Celina Maria Turchi Martelli; Ricardo Arraes de Alencar Ximenes; Thalia Velho Barreto Araújo; Maria Angela Wanderley Rocha; Regina Coeli Ferreira Ramos; Rafael Dhalia; Rafael Freitas de Oliveira França; Ernesto Torres de Azevedo Marques Júnior; Laura Cunha Rodrigues
Journal:  Am J Public Health       Date:  2016-04       Impact factor: 9.308

3.  "What do you mean 'what's wrong with her?'": stigma and the lives of families of children with disabilities.

Authors:  Sara E Green
Journal:  Soc Sci Med       Date:  2003-10       Impact factor: 4.634

4.  Microcephaly epidemic related to the Zika virus and living conditions in Recife, Northeast Brazil.

Authors:  Wayner Vieira de Souza; Maria de Fátima Pessoa Militão de Albuquerque; Enrique Vazquez; Luciana Caroline Albuquerque Bezerra; Antonio da Cruz Gouveia Mendes; Tereza Maciel Lyra; Thalia Velho Barreto de Araujo; André Luiz Sá de Oliveira; Maria Cynthia Braga; Ricardo Arraes de Alencar Ximenes; Demócrito de Barros Miranda-Filho; Amanda Priscila de Santana Cabral Silva; Laura Rodrigues; Celina Maria Turchi Martelli
Journal:  BMC Public Health       Date:  2018-01-12       Impact factor: 3.295

5.  Factors associated with unintended pregnancy in Brazil: cross-sectional results from the Birth in Brazil National Survey, 2011/2012.

Authors:  Mariza Miranda Theme-Filha; Marcia Leonardi Baldisserotto; Ana Claudia Santos Amaral Fraga; Susan Ayers; Silvana Granado Nogueira da Gama; Maria do Carmo Leal
Journal:  Reprod Health       Date:  2016-10-17       Impact factor: 3.223

6.  Reconstructing normality following the diagnosis of a childhood chronic disease: does "rare" make a difference?

Authors:  Evi Germeni; Isabella Vallini; Mario G Bianchetti; Peter J Schulz
Journal:  Eur J Pediatr       Date:  2018-01-16       Impact factor: 3.183

Review 7.  The Zika Virus Epidemic in Brazil: From Discovery to Future Implications.

Authors:  Rachel Lowe; Christovam Barcellos; Patrícia Brasil; Oswaldo G Cruz; Nildimar Alves Honório; Hannah Kuper; Marilia Sá Carvalho
Journal:  Int J Environ Res Public Health       Date:  2018-01-09       Impact factor: 3.390

Review 8.  [Congenital Zika syndrome: sociodemographic profile of mothersSíndrome congénito por el virus del Zika: perfil sociodemográfico de las madres].

Authors:  Paula de Souza Silva Freitas; Gabriella Barreto Soares; Helaine Jacinta Salvador Mocelin; Larissa Carolina Xavier Lacerda; Thiago Nascimento do Prado; Carolina Maia Martins Sales; Freddy Perez; Elda Coelho de Azevedo Bussinger; Ethel Leonor Noia Maciel
Journal:  Rev Panam Salud Publica       Date:  2019-02-07

9.  Social and economic impacts of congenital Zika syndrome in Brazil: Study protocol and rationale for a mixed-methods study.

Authors:  Hannah Kuper; Tereza Maciel Lyra; Maria Elisabeth Lopes Moreira; Maria do Socorro Veloso de Albuquerque; Thália Velho Barreto de Araújo; Silke Fernandes; Mireia Jofre-Bonet; Heidi Larson; Ana Paula Lopes de Melo; Corina Helena Figueira Mendes; Martha Cristina Nunes Moreira; Marcos Antonio Ferreira do Nascimento; Loveday Penn-Kekana; Camila Pimentel; Marcia Pinto; Clarissa Simas; Sandra Valongueiro
Journal:  Wellcome Open Res       Date:  2019-09-11

10.  Microcephaly in Infants, Pernambuco State, Brazil, 2015.

Authors: 
Journal:  Emerg Infect Dis       Date:  2016-06-15       Impact factor: 6.883

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  1 in total

Review 1.  The legacy of ZikaPLAN: a transnational research consortium addressing Zika.

Authors:  Annelies Wilder-Smith; Elizabeth B Brickley; Ricardo Arraes de Alencar Ximenes; Demócrito de Barros Miranda-Filho; Celina Maria Turchi Martelli; Tom Solomon; Bart C Jacobs; Carlos A Pardo; Lyda Osorio; Beatriz Parra; Suzannah Lant; Hugh J Willison; Sonja Leonhard; Lance Turtle; Maria Lúcia Brito Ferreira; Rafael Freitas de Oliveira Franca; Louis Lambrechts; Johan Neyts; Suzanne Kaptein; Rosanna Peeling; Deborah Boeras; James Logan; Helen Dolk; Ieda M Orioli; Andreas Neumayr; Trudie Lang; Bonny Baker; Eduardo Massad; Raman Preet
Journal:  Glob Health Action       Date:  2021-10-26       Impact factor: 2.640

  1 in total

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