How do mothers feel? Life with children with congenital Zika syndrome

Freitas, Paula de Souza Silva; Soares, Gabriella Barreto; Mocelin, Helaine Jacinta Salvador; Lamonato, Larissa Carolina Xavier Lacerda; Sales, Carolina Maia Martins; Linde-Arias, Ana Rosa; Bussinger, Elda C.A.; Maciel, Ethel Leonor Nóia

doi:10.1002/ijgo.13044

Cited by 30 publications

(42 citation statements)

References 17 publications

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“…Gomez and Ocampo further highlight women's dissatisfaction with the healthcare system, delayed access to care due to socioeconomic inequities, and high out‐of‐pocket expenses. Freitas et al., Salvador Mocelin et al., and Tirado et al . found, through their separate qualitative assessments of affected women in Brazil and Colombia, that the combined social and medical impact of Zika virus infection disproportionately affects women and is closely linked to poverty—confirming the findings of others—and stressing the inequitable impact of the epidemic.…”

mentioning

confidence: 73%

Research and research capacity strengthening in the context of an emerging epidemic: Zika virus in Latin America

Thorson

Aslanyan

Brizuela

et al. 2020

Intl J Gynecology & Obste

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Research and Training in Tropical Diseases (TDR) with the support of PAHO joined, to issue a call for research proposals. The aim was to combine support for research capacity strengthening in the context of an emerging epidemic, with investigations into the multifaceted but largely unknown nature of the Zika virus outbreak. Researchers based in the countries most affected by the epidemic were encouraged to apply for funding that prioritized implementation research projects to support an evidence-based, comprehensive public health response. 3In many of the Zika-affected countries in Latin America, socioeconomic inequities and legislation limit access to sexual and reproductive health services such as modern contraceptives and safe abortion. 4 The Zika epidemic exposed this vulnerability further, given its dire consequences for pregnant women. Viral characteristics, such as sexual transmission of the virus caused by it persisting in semen several months after infection 5 and the highly contextualized varying incidence rates of microcephaly following Zika infection during pregnancy, highlighted how inequities in and unmet access to sexual and reproductive health services determine the epidemic's impact.The combined effort between the WHO-hosted special research programs and the WHO regional office-focusing on infectious diseases of poverty and sexual and reproductive health and rights-enabled WHO to address the need for cross-cutting efforts between research areas and disciplines, in response to a complex emergency like the Zika epidemic. Ranging from studies on the spatial distribution of the virus and its relative risk, to articles on understanding how the virus impacts women's reproductive choices in communities without access to safe abortion, the papers in this Supplement illustrate the broad variety of perspectives necessary to ensure an understanding of the Zika virus context and to tailor the necessary response.The articles included in this Supplement come from Brazil, Colombia, and Peru. Colleagues implementing a study in Colombia (Forero et al. 6 ) This is an open access article distributed under the terms of the Creative Commons Attribution IGO License which permits unrestricted use, distribution and reproduction in any medium, provided that the original work is properly cited. In any reproduction of this article there should not be any suggestion that WHO or the article endorse any specific organization or products. The use of the WHO logo is not permitted. This notice should be preserved along with the article's URL.

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mentioning

confidence: 73%

Research and research capacity strengthening in the context of an emerging epidemic: Zika virus in Latin America

Thorson

Aslanyan

Brizuela

et al. 2020

Intl J Gynecology & Obste

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“…While CZS-related morbidity most directly affects patients with the condition, a large amount of burden also arises from the disease’s impact on mothers and caretakers. The psychological sequelae experienced by the caretakers of children with CZS are extremely pervasive, with about half of surveyed caretakers, usually mothers, reporting moderate or severe depression and a similar proportion reporting anxiety [ 32 , 33 ]. Studies have also shown that over a third of mothers who experience EPL report depression, anxiety, or PTSD for months following the loss [ 62 ].…”

Section: Resultsmentioning

confidence: 99%

“…The range of DW for chronic sequelae following CHIKV infection was the published DWs for mild to severe rheumatoid arthritis, conditions analogous to persistent post-chikungunya rheumatic symptoms. In order to generate comprehensive burden assessments, the pervasive psychological sequelae reported among mothers and caretakers of children with CZS were also included in the analysis [ 33 , 34 ]. To calculate this burden, DWs for depression and anxiety were taken from James and colleagues [ 38 ], while the DW for post-traumatic stress disorder (PTSD), not listed in the GBD framework, was taken from Lim and colleagues [ 39 ].…”

Section: Methodsmentioning

confidence: 99%

“…Since congenital Zika syndrome (CZS) has only been a recognized complication since 2015, longer-term prospective follow-up will be necessary to further describe the condition and study the progression of symptoms throughout life [ 31 ]. While long-term prognosis remains unknown, data examining large CZS cohorts confirm that the syndrome causes considerable burden for both affected children and their caretakers at least through 3 years of age [ 28 , 32 , 33 ]. As of 2020, a WHO project examining pregnancy and child outcomes among ZIKV cohorts from many regions is currently ongoing [ 34 ].…”

Section: Introductionmentioning

confidence: 99%

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Measuring the global burden of chikungunya and Zika viruses: A systematic review

Puntasecca¹,

King²,

LaBeaud³

2021

PLoS Negl Trop Dis

104

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Throughout the last decade, chikungunya virus (CHIKV) and Zika virus (ZIKV) infections have spread globally, causing a spectrum of disease that ranges from self-limited febrile illness to permanent severe disability, congenital anomalies, and early death. Nevertheless, estimates of their aggregate health impact are absent from the literature and are currently omitted from the Global Burden of Disease (GBD) reports. We systematically reviewed published literature and surveillance records to evaluate the global burden caused by CHIKV and ZIKV between 2010 and 2019, to calculate estimates of their disability-adjusted life year (DALY) impact. Extracted data on acute, chronic, and perinatal outcomes were used to create annualized DALY estimates, following techniques outlined in the GBD framework. This study is registered with PROSPERO (CRD42020192502). Of 7,877 studies identified, 916 were screened in detail, and 21 were selected for inclusion. Available data indicate that CHIKV and ZIKV caused the average yearly loss of over 106,000 and 44,000 DALYs, respectively, between 2010 and 2019. Both viruses caused substantially more burden in the Americas than in any other World Health Organization (WHO) region. This unequal distribution is likely due to a combination of limited active surveillance reporting in other regions and the lack of immunity that left the previously unexposed populations of the Americas susceptible to severe outbreaks during the last decade. Long-term rheumatic sequelae provided the largest DALY component for CHIKV, whereas congenital Zika syndrome (CZS) contributed most significantly for ZIKV. Acute symptoms and early mortality accounted for relatively less of the overall burden. Suboptimal reporting and inconsistent diagnostics limit precision when determining arbovirus incidence and frequency of complications. Despite these limitations, it is clear from our assessment that CHIKV and ZIKV represent a significant cause of morbidity that is not included in current disease burden reports. These results suggest that transmission-blocking strategies, including vector control and vaccine development, remain crucial priorities in reducing global disease burden through prevention of potentially devastating arboviral outbreaks.

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“…During the Zika epidemic, mothers with babies with CZS were the public face of the epidemic. Mothers reported panic and social guilt knowing that the vertically-transmitted congenital syndrome resulted from them being infected by Zika [14,15]. Women, who in Brazil, as well as elsewhere are usually responsible for assuming the role of carer, took on the major caring role which involved a burden that went beyond the (productive and reproductive) workday [16].…”

Section: Introductionmentioning

confidence: 99%

“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

Melo

Lyra

Araújo

et al. 2020

Viruses

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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.

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How do mothers feel? Life with children with congenital Zika syndrome

Cited by 30 publications

References 17 publications

Research and research capacity strengthening in the context of an emerging epidemic: Zika virus in Latin America

Research and research capacity strengthening in the context of an emerging epidemic: Zika virus in Latin America

Measuring the global burden of chikungunya and Zika viruses: A systematic review

“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

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