Qualitative evaluation of a support group for women with children with Zika congenital syndrome in Southern Colombia.

PURPOSE: To qualitatively evaluate the perceived benefits of participation in a support group (SG) for mothers of children with Congenital Zika Syndrome (CZS) in Southern Colombia. METHODS: The "Women of Zika" SG was running in Sourthern Colombia from August 2018 to December 2019. The evaluation was carried out between October and December 2019, 21 women participated and the information was collected in three group discussions and non-participant observation. A thematic content analysis of the data was carried out with the support of Atlas ti-v8. RESULTS: Women's discourses assessing the perceived benefits of participating in the SG were organized under three categories according to the three dimensions of social support: "Teaching and learning from each other: the SG as a source of information support," "Coping with adversity: the SG as a source of emotional support" and "Creating your own identity: the SG as a source of relational support." CONCLUSION: The SG has been an important source of social support for women with children with CZS and it meant had a shared space where they developed individual and collective agency capacities. SGs can be a useful strategy for social and therapeutic support for families with children with multiple disabilities, such as CZS.Implications for rehabilitationCaring after children with CZS has negative implications on the mental health and quality of life of these women.Specific interventions need to be developed to improve the quality of life of mothers of children with CZS.Support groups are an effective strategy for providing social support to women with children with different disabilities such as CZS.

ZIKV-Related Ideations and Modern Contraceptive Use: Cross-Sectional Evidence from the Dominican Republic, El Salvador, Honduras, and Guatemala.

Zika virus (ZIKV) can be sexually transmitted and can lead to severe neonatal and child health issues. The current study examines whether ZIKV-related ideational factors, including awareness of ZIKV and associated birth defects, are related to modern contraceptive use among women and men with sexual partners in four Latin American and Caribbean (LAC) countries. Data used are from cross-sectional household surveys conducted in 2018 in the Dominican Republic, El Salvador, Guatemala, and Honduras with representative samples of men and women aged 18-49 (N = 1,100). The association between self-reported use of modern contraception and measures of Zika knowledge, risk perceptions and social norms, and contraceptive self-efficacy was examined via sex disaggregated multivariate logistic regression models. Both men (OR 3.70, 95% CI 1.36-10.06, P < 0.05) and women (OR 3.71, 95% CI 2.30-5.99, P < 0.0001), who reported discussing family planning with their partner in the last year were more likely to use modern contraception compared with those who did not. Contrary to our hypothesis, knowledge that ZIKV can affect a fetus was negatively associated with modern contraceptive use for women (OR 0.49, 95% CI 0.29-0.85, P < 0.05). Given the cross-sectional nature of the survey, women not using contraception may be more likely to remember that ZIKV can affect a fetus. In the event of a related outbreak, future health promotion and communication efforts in LAC should focus on known determinants of modern contraceptive use, such as knowledge and partner communication, and knowledge of the health effects of ZIKV if pregnant, to influence family planning decision-making behavior.

Educational behaviors of pregnant women in the Bronx during Zika's International emerging epidemic: "First mom and then I'd Google. And then my doctor".

BACKGROUND: The objective of the study was to understand how pregnant women learned about Zika infection and to identify what sources of information were likely to influence them during their pregnancy. METHODS: We conducted 13 semi-structed interviews in English and Spanish with women receiving prenatal care who were tested for Zika virus infection. We analyzed the qualitative data using descriptive approach. RESULTS: Pregnant women in the Bronx learned about Zika from family, television, the internet and their doctor. Informational sources played different roles. Television, specifically Spanish language networks, was often the initial source of information. Women searched the internet for additional information about Zika. Later, they engaged in further discussions with their healthcare providers. CONCLUSIONS: Television played an important role in providing awareness about Zika to pregnant women in the Bronx, but that information was incomplete. The internet and healthcare providers were sources of more complete information and are likely the most influential. Efforts to educate pregnant women about emerging infectious diseases will benefit from using a variety of approaches including television messages that promote public awareness followed up by reliable information via the internet and healthcare providers.

Congenital Zika Infection and the Risk of Neurodevelopmental, Neurological, and Urinary Track Disorders in Early Childhood. A Systematic Review.

It was late 2015 when Northeast Brazil noticed a worrying increase in neonates born with microcephaly and other congenital malformations. These abnormalities, characterized by an abnormally small head and often neurological impairment and later termed Congenital Zika Syndrome, describe the severity of neurodevelopmental and nephrological outcomes in early childhood, and the implication of microcephaly at birth. The purpose of the study was to describe the neurodevelopmental outcomes in children exposed to Zika virus during fetal life, with and without microcephaly at birth. The systematic review included research studies about the neurodevelopmental outcomes with and without microcephaly, as well as nephrological outcomes in early childhood. We searched PubMed, Crossref, PsycINFO, Scopus, and Google Scholar publications and selected 19 research articles published from 2018 to 2021. Most studies have linked the severity of microcephaly in childbirth to the neurodevelopmental and urinary outcomes in early childhood. However, most children without microcephaly at birth develop typically, while others may be at risk for language impairment.

Neurologic Manifestations of Noncongenital Zika Virus in Children.

We evaluated neurologic complications following noncongenital Zika virus infection in 11 children who presented with central nervous system signs. Zika virus RNA was detected by real-time reverse transcription-polymerase chain reaction in cerebrospinal fluid. Approximately one-quarter of patients required antiepileptic medication in follow-up, and 2 children progressed to learning difficulties or developmental delay.

Mental health and burden in mothers of children with congenital Zika syndrome during COVID-19 pandemic / Saúde mental e sobrecarga das mães de crianças com síndrome congênita do Zika durante a pandemia de COVID-19

Abstract Objectives: to evaluate burden, frequency of anxiety and signs and symptoms of depression in mothers of children with congenital Zika syndrome (CZS) during the COVID-19 pandemic and the social isolation period. Methods: this is a cross-sectional study conducted with mothers who care for their children with CZS. The data were collected by an online form with questions regarding mother's socioeconomic conditions and questions related with Zarit burden scale and Beck's inventories on depression and anxiety. Spearman's correlation tests and multiple regression analyzes were performed to assess factors related to mothers' burden and mental health. Results: 41 mothers were evaluated, 51.2% had mild burden, 39% had minimal anxiety and 73.2% did not have signs and symptoms of depression. Negative correlations were observed between levels of burden and maternal schooling (p=0.01), presence of signs and symptoms of anxiety and receiving financial aid (p<0.04) as well as the presence of signs and symptoms of anxiety and having children with seizures history (p=0.03). Conclusion: despite the risk of their children again being victims of an epidemic virus, mothers who care for their children with CZS did not present serious mental health impairments.

Resumo Objetivos: avaliar a sobre carga e frequência de sinais e sintomas de ansiedade e depressão em mães de crianças com síndrome congênita do Zika (SCZ) durante pandemia de COVID-19. e o período de isolamento social. Métodos: trata-se de um estudo transversal realizado com mães que cuidam de seus filhos com SCZ. Os dados foram coletados por meio de um formulário online contendo questões referentes as condições socioeconômicas da mãe além da escala de sobrecarga de Zarite dos inventários de Beck de depressão e ansiedade. Para avaliação de fatores relacionados a sobrecarga e saúde mental das mães foram realizados testes de correlação de Spearman e análises de regressão múltipla. Resultados: ao todo foram avaliadas 41 mães das quais 51,2% apresentaram sobrecarga leve, 39% apresentaram ansiedade mínima e 73,2% não apresentaram sinais e sintomas de depressão. Correlações negativas foram observadas entre níveis de sobrecarga e a escolaridade materna (p=0,01), presença de sinais e sintomas de ansiedade e recebimento de auxílio financeiro (p<0,04) assim como da presença de sinais e sintomas de ansiedade e ter filhos com histórico de crises convulsivas (p=0,03). Conclusão: apesar do risco iminente de seus filhos serem novamente vítimas de um vírus epidêmico, mães que cuidam de seus filhos com SCZ não apresentaram comprometimento graves na saúde mental.

Reorganizações familiares no contexto do cuidado ao bebê com Síndrome Congênita do Zika Vírus / Reorganizaciones familiares en el contexto del cuidado al bebé con síndrome del Zika Virus / Family restructuring in the context of baby's care with Zika Virus Congenital Syndrome

O artigo trata de experiências de familiares no cuidado de crianças com Síndrome Congênita do Zika Vírus (SCZV) e objetiva analisar o impacto do nascimento do bebê com malformação, as reorganizações psíquicas parentais e seus desdobramentos no cuidado, particularmente o materno. Foi adotada abordagem psicossocial, de base psicanalítica, em diálogo com estudos do campo da Saúde Coletiva. São analisadas narrativas de familiares de 32 encontros grupais realizados em ambulatório de um Instituto de Pesquisa no Rio de Janeiro, Brasil, em 2017. O processo de análise pautou-se na psicossociologia e na análise temática. Angústias, incertezas e sobrecarga marcaram a experiência parental. As dificuldades de desenvolvimento do bebê levaram os pais a um modo singular de lidar com seus filhos e à construção de caminhos de esperança e resistência. O protagonismo materno tornou-se a base para lutas nas áreas social, de saúde e educação. (AU)

El artículo trata sobre experiencias familiares en el cuidado de niños con Síndrome Congénito del Zika Virus y su objetivo es analizar el impacto del nacimiento del bebé con malformación, las reorganizaciones psíquicas parentales y sus desdoblamientos en el cuidado, particularmente el materno. Se adoptó el abordaje psicosocial, de base psicoanalítica, en diálogo con estudios del campo de la Salud Colectiva. Se analizaron narrativas de familiares de 32 encuentros grupales realizados en ambulatorio del Instituto de Investigación en Río de Janeiro, Brasil, en 2017. El proceso de análisis se pautó en la psicosociología y el análisis temático. Angustias, incertidumbres y sobrecarga señalaron la experiencia parental. Las dificultades de desarrollo del bebé llevaron a los padres a un modo singular de lidiar con sus hijos y a la construcción de caminos de esperanza y resistencia. El protagonismo materno se convirtió en la base para luchas en las áreas social, de salud y de educación. (AU)

This paper addresses family members' experiences in the care of children with the Zika Virus Congenital Syndrome. It aims to analyze the impact of the birth of babies with malformations, the parents' psychological restructuring - especially the mothers' - and the implications in the baby's care. A psychosocial, psychoanalytical approach was adopted in dialogue with Public Health studies. We analyzed the narratives of family members who attended 32 group meetings conductedin an outpatient clinic of a Research Institute in Rio de Janeiro, Brazil, in 2017. The analysis was based on psychosociology and thematic analysis. Anguish, uncertainties, and overload marked parental experience. The baby's developmental difficulties led parents to a unique way of dealing with their children and building hope and resistance paths. Maternal leadership became the basis for struggles in the social, health, and education fields. (AU)

Abordagem profissional em tempos de pandemia: o que aprendemos com o Zika vírus? / Abordaje profesional en tiempos de pandemia: ¿qué aprendemos con el Zika virus? / Professional approach in times of pandemic: what have we learned from the Zika virus?

A formação de vínculo entre famílias de crianças com Síndrome Congênita do Zika (SCZ) e profissionais de saúde é condição sine qua non para o desenvolvimento das crianças afetadas. O estudo objetiva compreender a perspectiva de mães de crianças com SCZ acerca da abordagem profissional e da formação de vínculos no processo de cuidado em saúde durante a epidemia de Zika vírus. Trata-se de uma pesquisa qualitativa, descritivo-exploratória que entrevistou 25 mães. Os resultados revelam que os profissionais de saúde tiveram práticas de desumanização da assistência e cometeram violência obstétrica. Contrapondo a desumanização, também houve casos esporádicos de práticas humanizadas com formação de vínculo. Os resultados deste estudo apontam a necessidade de estratégias e intervenções em prol de melhor atendimento à gestante com diagnóstico de malformação congênita e adequado manejo na abordagem de doenças emergentes e pandemias. (AU)

La formación de vínculo entre familias de niños con Síndrome Congénito del Zika y profesionales de salud es condición sine qua non para el desarrollo de los niños afectados. El objetivo del estudio es comprender la perspectiva de madres de niños con SCZ sobre el abordaje profesional, formación de vínculos en el proceso de cuidado de la salud durante la epidemia de Zika Vírus. Se trata de un estudio cualitativo, descriptivo-exploratorio, que entrevistó a 25 madres. Los resultados revelan que los profesionales de salud tuvieron prácticas de deshumanización de la asistencia y cometieron violencia obstétrica. Contraponiendo la deshumanización, también hubo casos esporádicos de prácticas humanizadas con formación de vínculo. Los resultados de este estudio señalan la necesidad de estrategias e intervenciones en pro de una mejor atención a la gestante con diagnóstico de malformación congénita y adecuado manejo en el abordaje de enfermedades emergentes y pandemias. (AU)

The bonding between families of children with Zika Congenital Syndrome and health professionals is a sine qua non for the development of the affected children. This study aims to know the perspective of mothers of children with ZCS regarding the professional approach, forming bonds in the health care process during the Zika Virus epidemic. It is a qualitative, descriptive-exploratory research, with interview of 25 mothers. The results reveal that health professionals had practices of dehumanizing care and committed obstetric violence. In contrast to dehumanization, there have also been sporadic cases of humanized practices with bonding. The results of this study point to the need for strategies and interventions for better care for pregnant women with a diagnosis of congenital malformation and adequate management in addressing emerging diseases and pandemics. (AU)

SNS Usage and Third-person Effects in the Risk Perception of Zika Virus among Singaporean Women.

This study examines the SNS activities of Singaporean women to assess how they perceive the risk of Zika virus infection based on the consumption of Zika-related news. Results from an online survey (N = 510) confirmed that third-person risk perception exists among study participants. Individual posting of ZIKA-related news on SNSs was negatively associated with third-person perception. Additionally, third-person perception was negatively correlated with preventive behavioral intention. A moderated mediation model analysis revealed that attention to ZIKA-related news on SNSs significantly moderates the indirect relationship between posting news of ZIKA on SNSs and preventive behavioral intention. The findings of this study are expected to increase the understanding of the third-person effect in the context of infectious diseases based on users' SNS activities.

No effect of prior Dengue virus 1 infection in mouse dams on long-term behavioral profiles in offspring infected with Zika virus during gestation.

Zika virus (ZIKV) is a mosquito-borne Flavivirus structurally and antigenically related to Dengue virus (DENV). Zika virus has been associated with congenital anomalies and most ZIKV outbreaks have occurred in endemic areas of DENV. The present study investigated the effects of prior DENV serotype 1 (DENV1) immunity in immunocompetent female Swiss mice on gestational ZIKV infection in offspring. Physical/reflex development, locomotor activity, anxiety, visual acuity, and brain-derived neurotrophic factor (BDNF) levels were evaluated in offspring during infancy and adolescence. Anti-DENV1 and anti-ZIKV antibodies were detected in sera of the progenitors, whereas no ZIKV genomes were detected in the offspring brain. Pups from dams with only DENV1 immunity presented alterations of physical/reflex development. Pups from all infected dams exhibited time-related impairments in locomotor activity and anxiolytic-like behavior. Offspring from DENV/ZIKV-infected dams exhibited impairments in visual acuity during infancy but not during adolescence, which was consistent with morphometric analysis of the optic nerve. Pups from DENV1-, ZIKV-, and DENV/ZIKV-infected dams exhibited a decrease in BDNF levels during infancy and an increase during adolescence in distinct brain regions. In summary, we found no influence of prior DENV1 immunity on gestational ZIKV infection in offspring, with the exception of alterations of early visual parameters, and an increase in BDNF levels in the hippocampus during adolescence.

Mental Models of Infectious Diseases and Public Understanding of COVID-19 Prevention.

The emergence of viral diseases such as Ebola virus disease, Zika virus disease, and the coronavirus disease (COVID-19) has posed considerable challenges to health care systems around the world. Public health strategy to address emerging infectious diseases has depended in part on human behavior change and yet the perceptions and knowledge motivating that behavior have been at times inconsistent with the latest consensus of peer-reviewed science. Part of that disjuncture likely involves the existence and persistence of past ideas about other diseases. To forecast and prepare for future epidemic and pandemic response, we need to better understand how people approach emerging infectious diseases as objects of public opinion during the periods when such diseases first become salient at a population level. In this essay, we explore two examples of how existing mental models of past infectious diseases appear to have conditioned and constrained public response to novel viral diseases. We review previously reported experiences related to Zika virus in Central America and discuss public opinion data collected in the early months of the COVID-19 pandemic. In the case of Zika virus disease, we assess how thinking about earlier mosquito-borne disease seems to have affected public consideration of the virus in Guatemala. In the case of COVID-19, we assess how previous vaccination behavior for a different disease is associated with intention to obtain vaccination for COVID-19 in the future.

Mothers as facilitators for a parent group intervention for children with Congenital Zika Syndrome: Qualitative findings from a feasibility study in Brazil.

BACKGROUND: The Zika virus outbreak in Brazil (2015-2016) affected thousands of children who were born with Congenital Zika Syndrome (CZS). Families play an important role in their care of children with complex needs, yet their knowledge, experience and skills are rarely harnessed in existing interventions to best support these families. OBJECTIVE: This study explores the use of mothers as facilitators for a community-based group intervention for children with CZS and their caregivers in Brazil. METHODS: Four facilitators were trained to deliver the 10-week intervention called "Juntos". Two were mothers of a child with CZS ("expert mothers") and two were therapists (speech therapist and physiotherapist). The intervention was delivered to three groups, generally including 8-10 caregivers. Two researchers, who were psychologists, observed the groups and held focus group discussions at the end of each session. They undertook semi-structured interviews post intervention with a purposive sample of caregivers, and with the facilitators. Observation notes were collated and summarised. Transcripts were transcribed and thematically analysed using five elements to assess feasibility: acceptability, demand, implementation, practicality and adaptation. RESULTS: The use of expert mothers as facilitators was considered to be acceptable and there was demand for their role. Their experiential knowledge was viewed as important for sharing and learning, and supporting and encouraging the group. The intervention was delivered with fidelity by the expert mothers. The practicality of the intervention was facilitated by holding the group sessions in the community, providing transport costs to facilitators and participants, paying expert mothers and therapist facilitators equally and supporting the expert mothers through a mentorship programme. Equal payment with the therapist enabled the expert mothers to better facilitate the groups, through increased confidence in the value of their role. Adaptation of the intervention included development of video resources and mentoring guidelines. CONCLUSION: The use of expert mothers as facilitators of caregiver groups provides a unique approach to harness the knowledge, experience, and skills of families to provide care, and is likely to be feasible in similar contexts.

Who's afraid of Ebola? Epidemic fires and locative fears in the Information Age.

Epidemics have traditionally been viewed as the widespread occurrence of infectious disease within a community, or a sudden increase above what is typical. But modern epidemics are both more and less than the diffusion of viral entities. We argue that epidemics are 'fire objects', using a term coined by Law and Singleton: They generate locative fears through encounters that focus attention on entities that are unknown or imprecisely known, transforming spaces and humans into indeterminate dangers, alternating appearance and absence. The Ebola epidemic of 2014 had more complex impacts than the number of infections would suggest. We employ multi-sited qualitative interviews to argue that locative fear is the essence of modern global epidemics. In the discussion we contrast Ebola with both the Zika epidemic that followed and the ongoing coronavirus (COVID-19) pandemic.

Long-term alterations in brain and behavior after postnatal Zika virus infection in infant macaques.

Zika virus (ZIKV) infection has a profound impact on the fetal nervous system. The postnatal period is also a time of rapid brain growth, and it is important to understand the potential neurobehavioral consequences of ZIKV infection during infancy. Here we show that postnatal ZIKV infection in a rhesus macaque model resulted in long-term behavioral, motor, and cognitive changes, including increased emotional reactivity, decreased social contact, loss of balance, and deficits in visual recognition memory at one year of age. Structural and functional MRI showed that ZIKV-infected infant rhesus macaques had persistent enlargement of lateral ventricles, smaller volumes and altered functional connectivity between brain areas important for socioemotional behavior, cognitive, and motor function (e.g. amygdala, hippocampus, cerebellum). Neuropathological changes corresponded with neuroimaging results and were consistent with the behavioral and memory deficits. Overall, this study demonstrates that postnatal ZIKV infection in this model may have long-lasting neurodevelopmental consequences.

The impact of news exposure on collective attention in the United States during the 2016 Zika epidemic.

In recent years, many studies have drawn attention to the important role of collective awareness and human behaviour during epidemic outbreaks. A number of modelling efforts have investigated the interaction between the disease transmission dynamics and human behaviour change mediated by news coverage and by information spreading in the population. Yet, given the scarcity of data on public awareness during an epidemic, few studies have relied on empirical data. Here, we use fine-grained, geo-referenced data from three online sources-Wikipedia, the GDELT Project and the Internet Archive-to quantify population-scale information seeking about the 2016 Zika virus epidemic in the U.S., explicitly linking such behavioural signal to epidemiological data. Geo-localized Wikipedia pageview data reveal that visiting patterns of Zika-related pages in Wikipedia were highly synchronized across the United States and largely explained by exposure to national television broadcast. Contrary to the assumption of some theoretical epidemic models, news volume and Wikipedia visiting patterns were not significantly correlated with the magnitude or the extent of the epidemic. Attention to Zika, in terms of Zika-related Wikipedia pageviews, was high at the beginning of the outbreak, when public health agencies raised an international alert and triggered media coverage, but subsequently exhibited an activity profile that suggests nonlinear dependencies and memory effects in the relation between information seeking, media pressure, and disease dynamics. This calls for a new and more general modelling framework to describe the interaction between media exposure, public awareness and disease dynamics during epidemic outbreaks.

An investigation into the knowledge, perceptions and role of personal protective technologies in Zika prevention in Colombia.

BACKGROUND: Arboviruses transmitted by day-biting Aedes mosquitoes are a major public health concern. With the challenges inherent in arbovirus vaccine and therapeutics development, vector control and bite prevention strategies are among the limited options available for immediate intervention. Bite prevention through personal protective technologies (PPT), such as topical mosquito repellents or repellent-impregnated clothing, may help to decrease biting rates and, therefore, the risk of disease in groups most susceptible to adverse outcomes from Zika virus. However, achieving high uptake and compliance with PPT can be challenging. METHODOLOGY/PRINCIPAL FINDINGS: To gain an insight into the knowledge and concerns of pregnant women surrounding Zika and their opinions regarding PPT, particularly repellent clothing, a focus group study was carried out with pregnant women, women of reproductive age, and semi-structured interviews with their male partners in two cities in Colombia. The discussions revealed shortfalls in basic knowledge of Zika virus, with several pregnant participants reporting being unaware of the potential for Zika-related congenital malformations. Although participants generally considered Zika to be a significant personal threat, most rated it as less of a concern than dengue or diarrheal diseases. Overall, repellent clothing and other forms of PPT were viewed as effective, although some participants expressed concerns over the high costs of repellents, and safety fears of regular contact with repellent chemicals, which they perceived as potentially harmful. Plant-derived repellents were considered to be safer than synthetic chemical repellents. Discussions also highlighted that health centers were the preferred source of information on bite-reduction. CONCLUSIONS/SIGNIFICANCE: Achieving high uptake and compliance with PPT in populations most at risk of adverse outcomes from Zika infection requires engaging key users in open dialogue to identify and address any practical issues regarding PPT use, and concerns over safety. The findings presented here suggest that educational campaigns should strongly emphasize the risks associated with Zika during pregnancy, and discuss safety profiles of approved synthetic repellents and the availability of EPA-approved plant-based repellents. In addition, the economic and political context should be a major consideration when evaluating personal mosquito-repellent strategies.

Women's reluctance for pregnancy: Experiences and perceptions of Zika virus in Medellin, Colombia.

OBJECTIVE: To explore how being infected with the Zika virus during pregnancy was experienced by affected women, and how it influenced their family relationships and future family planning. METHODS: We conducted a qualitative study, including 19 semistructured interviews with women of reproductive age and confirmed Zika infection during 2015-2018 in Medellin, Colombia. Purposeful sampling was applied, and participants were identified through National Public Health Surveillance System records. Interviews were recorded, transcribed verbatim, and analyzed using content analysis with inductive and deductive approaches. RESULTS: Of 19 women interviewed, eight women identified the pregnancy as unexpected and two women had undergone permanent sterilization. Women had mixed views about decision-making related to family planning, and not having an abortion in a future pregnancy was influenced by religious beliefs. Women knew about vector-borne transmission but were not well informed about sexual transmission of the virus. Women desired better support and guidance to ease concerns about Zika virus. CONCLUSION: All interviewed women expressed a need for more information about Zika virus and continuous support, specifically after delivery, from healthcare professionals. Communication strategies to enhance culturally sensitive messages and for accurate perception of information are recommended during Zika outbreaks.

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

OBJECTIVE: To describe the repercussions, from the perspectives of caregiver mothers, of confirmed congenital Zika syndrome (CZS) in their offspring. METHODS: A descriptive-exploratory study with a qualitative approach was carried out in the state of Espírito Santo in southeastern Brazil, with 25 women who had a child diagnosed with CZS. RESULTS: Emerging themes from the content analysis were grouped into two categories: (1) inequalities experienced by mothers, including social inequality, poverty, and gender inequality; (2) the impact of a child with CZS on mothering, including feelings at the time of diagnosis, maternal isolation and mental health, experiences of stigma and prejudice, and exhausting itineraries searching for therapeutic care. CONCLUSION: The repercussions of CZS were a huge burden on already vulnerable women, and social inequalities and poverty were important markers in the mothers' reports. Many of the families affected by CZS already lived in precarious social conditions and these conditions were exacerbated further. Robust public and social policies to support these mothers need effective implementation given that babies born with CZS need long-term care and support.

[Experiences of parents of children born with microcephaly during the Zika epidemic following disclosure of the diagnosis]. / Experiências de pais de crianças nascidas com microcefalia, no contexto da epidemia de Zika, a partir da comunicação do diagnóstico.

This article aims to understand how parents of children with microcephaly received the diagnosis. This qualitative study was conducted at State Referral Center for Children's Neurodevelopment, Care, and Rehabilitation (NINAR) in São Luís, Maranhão State, Brazil, from April 2017 to February 2018. Participants in the study included parents or guardians of children with microcephaly. Data collection included structured and semi-structured interviews with 3 couples, 16 mothers, and 1 great-grandmother, totaling 20 interviews. The sample was defined by the saturation criterion, and content analysis was performed according to the thematic modality. Eighteen interviewees reported that the diagnosis had been disclosed to them inappropriately and traumatically, sometimes linked to a sense of "end of life" and dissociated from orientation on ways to cope with the situation and care for the child. The diagnosis of microcephaly was disclosed by physicians in 15 of the 20 cases. Three other cases were disclosed as follows: one by a nurse, one by the mother-in-law (who had learned of the diagnosis from the physician), and one by a health department employee. The other two did not receive the diagnosis: one couple learned of the microcephaly from the infant's Certificate of Life Birth and the other associated the child's problem with information broadcast on the media. Three thematic lines were analyzed: omission of the diagnosis; process of disclosure of the diagnosis; and anticipation of the prognosis. The ways diagnosis of microcephaly was disclosed to families influenced how they accepted and coped with the situation.

Este artigo tem como objetivo compreender como os pais de crianças com microcefalia receberam a comunicação do diagnóstico. Trata-se de um estudo qualitativo, realizado no Centro de Referência Estadual em Neurodesenvolvimento, Assistência e Reabilitação de Crianças (NINAR), em São Luís, Maranhão, Brasil, no período de abril de 2017 a fevereiro de 2018. Participaram do estudo os responsáveis de crianças com microcefalia. As técnicas de coleta de dados foram entrevistas estruturadas e semiestruturadas com 3 casais, 16 mães e 1 bisavó, totalizando 20 entrevistas. A amostra foi definida pelo critério de saturação, e foi realizada análise de conteúdo na modalidade temática. Para 18 entrevistados, a forma da comunicação foi considerada inadequada e traumática, algumas vezes atrelada ao sentido de "fim da vida" e dissociada de orientações sobre as formas de enfrentar a situação e cuidar do filho. Em 15 dos 20 casos, o diagnóstico de microcefalia foi dado por médicos e, em 3 casos, por enfermeira, por sogra (que soube pelo médico) e por uma funcionária da Secretaria de Saúde. Os dois outros não receberam diagnóstico: um casal soube da microcefalia pela Declaração de Nascido Vivo e outro associou o problema do filho a informações veiculadas na mídia. Foram três os eixos temáticos analisados: omissão do diagnóstico, processo de comunicação do diagnóstico e antecipação de prognóstico. As formas de comunicação do diagnóstico da microcefalia aos familiares influenciaram nos modos de aceitação e enfrentamento da situação.

Este artículo tiene como objetivo comprender cómo los padres de niños con microcefalia recibieron la comunicación del diagnóstico. Se trata de un estudio cualitativo, realizado en el Centro de Referencia Estatal en Neurodesarrollo, Asistencia y Rehabilitación de Niños (NINAR), en São Luís, Maranhão, Brasil, durante el período de abril de 2017 a febrero de 2018. Participaron en el estudio los responsables de niños con microcefalia. Las técnicas de recogida de datos fueron entrevistas estructuradas y semiestructuradas con 3 parejas, 16 madres y 1 bisabuela, totalizando 20 entrevistas. La muestra se definió por el criterio de saturación y se realizó un análisis de contenido de modalidad temática. Para los 18 entrevistados, la forma de la comunicación fue considerada inadecuada y traumática, algunas veces vinculada al sentido de "fin de la vida" y disociada de orientaciones sobre las formas de enfrentar la situación y cuidar del hijo. El diagnóstico de microcefalia fue proporcionado por médicos en 15 de los 20 casos y en tres casos: por una enfermera, por la suegra (que lo supo por el médico) y por una funcionaria de la Secretaría de Salud. Los otros dos no recibieron diagnóstico: una pareja supo que era microcefalia por la declaración de nacido vivo (DNV) y otra asoció el problema del hijo con la información a través de los medios de comunicación. Fueron tres los ejes temáticos analizados: omisión del diagnóstico; proceso de comunicación del diagnóstico y anticipación de pronóstico. Las formas de comunicación del diagnóstico de la microcefalia a los familiares influenciaron en las formas de aceptación y de saber cómo enfrentarse a la situación.

Engagement of Fathers in Parent Group Interventions for Children with Congenital Zika Syndrome: A Qualitative Study.

We aimed to explore the engagement of fathers in a community-based group intervention (Juntos) for children with congenital Zika syndrome (CZS) and their caregivers in Brazil. Six Juntos groups were facilitated from August 2017 to May 2018. We conducted a qualitative study to evaluate the feasibility and acceptability of the intervention for fathers of children with CZS. Methods included participant observation, focus group discussions, and semi-structured interviews of fathers with a child enrolled in the program. Data collected were transcribed, coded and thematically analyzed to explore father preference for, and beliefs about the intervention and to assess potential barriers and enablers to their involvement. Forty-nine families (61 participants) enrolled, of whom 20% (12/61) were fathers. Seven (58%) fathers attended more than 7 out of 10 sessions. The content of Juntos was found to be acceptable to those fathers who attended. Participation in the group offered fathers the opportunity to share experiences of caring for their child and demonstrate their importance as care agents. Work commitments, and the view of mothers as primary caregivers were barriers to engagement of fathers. Facilitators to engagement included a presentation of clear objectives for fathers' involvement and the opportunity to learn a practical skill related to caring for their child. A better understanding of the perspectives of fathers is crucial to help increase their involvement in parenting interventions.