Collective Health Centre, Academic Centre of Vitoria, Federal University of Pernambuco, Vitoria de Santo Antão 55608-680, Brazil.
Aggeu Magalhães Institute, Oswaldo Cruz Foundation, Pernambuco 50670-420, Brazil.
Viruses. 2020 Dec 8;12(12):1410. doi: 10.3390/v12121410.
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.
巴西的先天性寨卡综合征（CZS）疫情将人们的注意力聚焦在许多超出疾病本身的因素上，例如贫困、性别以及医疗保健方面的不平等。在这项研究中，女性是典型的研究对象，不仅因为寨卡病毒是一种垂直传播的疾病，还因为在巴西乃至其他地方，女性通常是儿童的主要照顾者。这是一项使用半结构化访谈对巴西 23 名患有 CZS 的儿童的女性家庭照顾者进行的定性分析研究。通过传记中断的概念，我们分析了参与照顾患病儿童的女性所经历的一些社会影响。我们发现，残疾儿童的到来导致了与慢性病患者类似的传记中断。社会支持网络通过不同代际的女性之间的联盟形成，揭示了团结网络，但也凸显了国家在应对这些社会脆弱性方面的缺位。追踪这些传记叙述的轨迹，使我们能够理解妇女如何在一个以身体规范性和不平等为模式的社会中为其残疾子女的价值而辩护。这些结果可能为一个更具包容性的社会提供线索，这个社会需要对抗以压迫女性为特征的性别压迫制度和以女性为中心的劳动性别分工。
