Matos Monica Machado de, Cunha Litza Andrade, Iriart Jorge Alberto Bernstein, Silva Luís Augusto Vasconcelos da
Universidade Federal da Bahia, Salvador, Brasil.
Cad Saude Publica. 2025 Apr 11;41(3):e00235123. doi: 10.1590/0102-311XPT235123. eCollection 2025.
This investigation aims to present a network of events in which congenital Zika syndrome (CZS) was woven. The study closely followed the care needs of the families, the fears, the biomedical uncertainties, the difficulties in understanding, the challenges outlined at the moment in which difficult decisions were made and the entire flow of events that show the reality of the disease. The methodological orientation was based on the assumption that CZS emerged as it was manipulated in different practices in various spaces as a reference. By conceiving the processes of health and disease in this way, this study was inspired by the work of ethnographer Annemarie Mol. It is, therefore, a praxiography, understood as a research method, which does not focus on the investigation of meanings regarding the disease, but on the practices in which it is acted out. The rise of the disease was not only the result of medical activity, but the care practices of the families, their experiences, perceptions, discoveries and understandings about the disease also contributed to the production of what we know today as CZS. In this investigation, we sought to show how CZS appeared as a result of the actions performed by a variety of agents, causing different ways of reading the body and dealing with the disease to coexist incorporated into the various activities.
本调查旨在呈现一个编织成先天性寨卡综合征(CZS)的事件网络。该研究密切跟踪了家庭的护理需求、恐惧、生物医学上的不确定性、理解上的困难、做出艰难决策时所面临的挑战以及展示该疾病现实情况的整个事件流程。方法论导向基于这样一种假设,即CZS是在不同空间的各种实践中作为一种参照被操控时出现的。通过以这种方式构想健康与疾病的过程,本研究受到了民族志学者安妮玛丽·莫尔著作的启发。因此,这是一种实践记述,被理解为一种研究方法,它不侧重于对疾病意义的探究,而是侧重于疾病实际发生的实践。该疾病的出现不仅是医疗活动的结果,家庭的护理实践、他们对疾病的经历、认知、发现和理解也促成了我们如今所知的CZS的产生。在本次调查中,我们试图展示CZS是如何因各种行为主体的行动而出现的,这些行动导致了对身体的不同解读方式以及应对疾病的方式在各种活动中并存。