The Congenital Zika Syndrome (CZS) epidemic took place in Brazil between 2015 and 2017 and led to the emergence of at least 3194 children born with CZS. We explored access to healthcare services and activities in the Unified Health Service (Sistema Único de Saúde: SUS) from the perspective of mothers of children with CZS and professionals in the Public Healthcare Network. We carried out a qualitative, exploratory study, using semi-structured interviews, in two Brazilian states—Pernambuco, which was the epicentre of the epidemic in Brazil, and Rio de Janeiro, where the epidemic was less intense. The mothers and health professionals reported that healthcare provision was insufficient and fragmented and there were problems with follow-up care. There was a lack of co-ordination and an absence of communication between the various specialized services and between different levels of the health system. We also noted a public–private mixture in access to healthcare services, resulting from a segmented system and related to inequality of access. High reported household expenditure is an expression of the phenomenon of underfunding of the public system. The challenges that mothers and health professionals reported exposes contradictions in the health system which, although universal, does not guarantee equitable and comprehensive care. Other gaps were revealed through the outbreak. The epidemic provided visibility regarding difficulties of access for other children with disabilities determined by other causes. It also made explicit the gender inequalities that had an impact on the lives of mothers and other female caregivers, as well as an absence of the provision of care for these groups. In the face of an epidemic, the Brazilian State reproduced old fashioned forms of action—activities related to the transmitting mosquito and to prevention with an emphasis on the individual and no action related to social determinants.
Global concern broke out in late 2015 as thousands of children in Brazil were born with microcephaly, which was quickly linked to congenital infection with Zika virus (ZIKV). ZIKV is now known to cause a wider spectrum of severe adverse outcomes—congenital Zika syndrome (CZS)—and also milder impairments. This study aimed to explore the social and economic impacts of CZS in Brazil. Data was collected through mixed methods across two settings: Recife City and Jaboatão dos Guararapes in Pernambuco State (the epicentre of the epidemic), and the city of Rio de Janeiro (where reports of ZIKV infection and CZS were less frequent). Data was collected May 2017-January 2018. Ethical standards were adhered to throughout the research. In-depth qualitative interviews were conducted with: mothers and other carers of children with CZS (approximately 30 per setting), pregnant women (10-12 per setting), men and women of child-bearing age (16-20 per setting), and health professionals (10-12 per setting). Thematic analysis was undertaken independently by researchers from at least two research settings, and these were shared for feedback. A case-control study was undertaken to quantitatively explore social and economic differences between caregivers of a child with CZS (cases) and caregivers with an unaffected child (controls). We aimed to recruit 100 cases and 100 controls per setting, from existing studies. The primary caregiver, usually the mother, was interviewed using a structured questionnaire to collect information on: depression, anxiety, stress, social support, family quality of life, health care and social service use, and costs incurred by families. Multivariable logistic regression analyses were used to compare outcomes for cases and controls. Costs incurred as a result of CZS were estimated from the perspective of the health system, families and society. Modelling was undertaken to estimate the total economic burden of CZS from those three perspectives.
Global concern broke out in late 2015 as thousands of children in Brazil were born with microcephaly, which was quickly linked to congenital infection with Zika virus (ZIKV). ZIKV is now known to cause a wider spectrum of severe adverse outcomes—congenital Zika syndrome (CZS)—and also milder impairments. This study aimed to explore the social and economic impacts of CZS in Brazil. Data was collected through mixed methods across two settings: Recife City and Jaboatão dos Guararapes in Pernambuco State (the epicentre of the epidemic), and the city of Rio de Janeiro (where reports of ZIKV infection and CZS were less frequent). Data was collected May 2017-January 2018. Ethical standards were adhered to throughout the research. In-depth qualitative interviews were conducted with: mothers and other carers of children with CZS (approximately 30 per setting), pregnant women (10-12 per setting), men and women of child-bearing age (16-20 per setting), and health professionals (10-12 per setting). Thematic analysis was undertaken independently by researchers from at least two research settings, and these were shared for feedback. A case-control study was undertaken to quantitatively explore social and economic differences between caregivers of a child with CZS (cases) and caregivers with an unaffected child (controls). We aimed to recruit 100 cases and 100 controls per setting, from existing studies. The primary caregiver, usually the mother, was interviewed using a structured questionnaire to collect information on: depression, anxiety, stress, social support, family quality of life, health care and social service use, and costs incurred by families. Multivariable logistic regression analyses were used to compare outcomes for cases and controls. Costs incurred as a result of CZS were estimated from the perspective of the health system, families and society. Modelling was undertaken to estimate the total economic burden of CZS from those three perspectives.
Neste ensaio iluminamos temas lançados ao debate pós-epidemia de Zika Vírus (ZIKAV) na vida de mulheres e crianças. Analisamos 23 artigos, publicados entre 2016 e 2017, selecionados em periódicos brasileiros, no campo das Ciências Sociais e Humanas em Saúde. Há um discurso mestiço de reivindicação por direitos – grandes narrativas de apelo social e explicação pelas forças sociais de um Estado negligente – associado a pequenas narrativas de cuidado de um filho com deficiência. Provisoriamente, concluímos que a zona de contato se dá pelo movimento de resgate das pequenas narrativas na tradução das iniquidades produzidas pelo Estado na vida das pessoas comuns.
This article investigates how hope and trust played out for two groups at the forefront of the Zika epidemic: caregivers of children with congenital Zika syndrome and healthcare workers. We conducted 76 in-depth interviews with members of both groups to examine hope and trust in clinical settings, as well as trust in public institutions, in the health system and in the government of Brazil. During and after the Zika epidemic, hope and trust were important to manage uncertainty and risk, given the lack of scientific evidence about the neurological consequences of Zika virus infection. The capacity of healthcare workers and caregivers to trust and to co-create hope seems to have allowed relationships to develop that cushioned social impacts, reinforced adherence to therapeutics and enabled information flow. Hope facilitated parents to trust healthcare workers and interventions. Hope and trust appeared to be central in the establishment of support networks for caregivers. At the same time, mistrust in the government and state institutions may have allowed rumours and alternative explanations about Zika to spread. It may also have strengthened activism in mother’s associations, which seemed to have both positive and negative implications for healthcare service delivery. The findings also point to distrust in international health actors and global health agenda, which can impact community engagement in future outbreak responses in Brazil and other countries in Latin America.
OBJECTIVES: the aim of this study is to present a method for the production and selection of indicators to evaluate and/or monitor strategies to: a) prevent violence and promote protective family and community relations; b) provide care for victims of such violence and their family members; c) upgrade the recording and reporting of such violence; d) guarantee the rights of child and adolescent victims; and e) ensure due prosecution of perpetrators. METHODS: consensus-generating participatory methodologies were used (Delphi Method and Nominal Group Technique). RESULTS: 113 indicators were produced, with 27 and 91 indicators selected in scenarios with different scores. CONCLUSIONS: the consensus methodologies were adequate for the selection and validation of evaluation indicators, but criteria need to be established for selection among the indicators adopted.
Cad. Saúde Pública 2018; 34(8):e00075718Recently, the Zika virus epidemic has caused a setting of health emergency in Brazil. This event has mobilized several stakeholders to look at this reality -where women, men and children born with the marks of these diagnoses are differently affected -as one with vectors, illnesses and obscure diagnosis situations. Recalling this recent memory means summoning the political realms to demand the commitment to the health of the population in contexts of health emergencies and their repercussions in the daily life.The Zika virus epidemic is characterized as a total social fact 1 , precisely because it synthesizes several determinations about epidemic processes by combining factors of economic and social inequality and revealing processes of vulnerability. This situation triggers a chronology of events that establish and dismiss the emergency: in November 2015, the Brazilian Ministry of Health issued a National Public Health Emergency 2 ; in February 2016, the World Health Organization (WHO) classified the Zika virus epidemic as a public health emergency of international concern 3 ; in March 2016, the Protocol for Surveillance and Response to the Occurrence of Microcephaly Related to Zika Virus Infection 4 was published; in November 2016, the WHO no longer considered the Zika virus as an international emergency 5 ; and, in May 2017, the Brazilian Ministry of Health declared the end of the emergency 6 .These sequential events, responsible for inaugurating and ceasing emergencies, do not suspend the living experience: babies will grow up and need, in addition to rehabilitation services, nurseries and schools able to receive them; and parents and relatives will need to work and most likely will be burdened by their exhausting routines. The emotional vulnerability to which professionals and users of health system are submitted are equivalent within a chain of iniquities and search for knowledge. Moreover, this chronology delimits a process that risks sexual and reproductive rights in the name of securitization of epidemics 7 , reinforcing fears and stigmatization.If, on the one hand, international agencies and the Brazilian government position themselves and qualify emergencies, on the other, by anticipating them very closely, the scientific field -both clinicians and researchers -mobilizes itself for answers 8,9,10 .Given this context, the National Network of Specialists of Zika and Related Diseases (RENEZIKA), among others, and studies on the biological and social aspects had the initiative of coming forward in a cooperation between national and international researchers to investigate and propose articulations for action.
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