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Conteúdo (article):

SÍNDROME CONGÊNITA DO ZIKA E IMPACTOS PARA AS FAMÍLIAS: UMA REVISÃO INTEGRATIVA
CONGENITAL ZIKA SYNDROME AND FAMILY IMPACTS: AN INTEGRATIVE REVIEW

Ana Paula Lopes de Melo – Universidade Federal de Pernambuco, Centro Acadêmico de Vitória (UFPE/CAV), ana.lmelo@ufpe.br, ORCID 0000-0002-5572-0609.
Tereza Maciel Lyra – Instituto Aggeu Magalhães, tereza.lyra@fiocruz.br, ORCID 0000-0002-3600-7250.
Jessyka Mary Vasconcelos Barbosa – Instituto Aggeu Magalhães, jessykamary@yahoo.com.br, ORCID 0000-0001-8303-9290
Thália Velho Barreto de Araújo – Universidade Federal de Pernambuco (UFPE), Programa de Pós-Graduação em Saúde Coletiva – PPGSC, thalia.velho.barreto@gmail.com, ORCID 0000-0001-9956-4145

Resumo
Em 2015, um espectro de anomalias congênitas, incluindo microcefalia, acometeu recém-nascidos como resultado da transmissão vertical pelo vírus Zika, posteriormente denominada Síndrome Congênita do Zika (SCZ). Desde então, cerca de 4 mil crianças foram afetadas em 27 países, sendo o Brasil o mais atingido. Cuidadores familiares também têm sido impactados. Esse estudo analisa publicações científicas que investigam as maneiras como a doença afetou as dinâmicas de vida de cuidadores familiares de crianças com SCZ. Realizou-se uma revisão integrativa de literatura consultando as bases de dados PubMed, Biblioteca Virtual em Saúde e Embase. Após as etapas de triagem, foram identificados 31 artigos. Os principais resultados foram agrupados em quatro categorias: a) impactos sociais que evidenciaram mudanças nas relações familiares, nos projetos de vida e no convívio social; b) impactos subjetivos - sentimentos de resiliência, solidão, luto, sobrecarga, medo, incerteza e relação com a espiritualidade; c) impactos econômicos e materiais - perda de renda, aumento de despesas, mudança de moradia e desemprego e d) impactos na saúde - despreparo dos serviços, renúncia do cuidado de si, modificações dos padrões nutricionais e de sono, repercussão para a saúde mental e níveis de estresse, ansiedade e depressão.

Palavras-chave: Síndrome Congênita de Zika; Cuidador Familiar; Zika Vírus; Família; Revisão.

Abstract
In 2015, a range of congenital anomalies resulting from mother-to-child transmission of the Zika virus emerged. Later called congenital Zika syndrome (CZS), the condition includes microcephaly. Since then, around 4,000 children have been affected in 27 countries, with Brazil accounting for the largest proportion of cases. Family caregivers have also been affected. This study analyzes the literature on caregivers of children with CZS and how the disease has affected their everyday lives. We conducted an integrative review using the PubMed, Virtual Health Library, and Embase databases. Thirty-one articles were identified for analysis after screening. The findings were grouped into four categories: a) social impacts – changes in family relationships, life projects, and social life; b) subjective impacts – feelings of resilience, loneliness, grief, overburdening, fear, uncertainty, and spirituality and religion; c) economic and material impacts – loss of income, increased household expenses, change of residence, and unemployment; and d) health impacts – service unpreparedness, selflessness, self-care, changes in nutritional and sleep patterns, and mental health problems, including stress, anxiety and depression.

Keywords: Congenital Zika Syndrome; Family Caregivers; Zika Virus; Family; Review.

Introduction
In 2015, various parts of Brazil witnessed a microcephaly epidemic in newborns, leading the World Health Organization (WHO) to declare a Public Health Emergency of International Concern (PHEIC)1.
Studies reported an association between these cases and Zika virus infection during pregnancy2–4 and named the condition congenital Zika syndrome (CZS). CZS is a complex disease that affects the neuropsychomotor development of children, resulting a variety of conditions ranging from asymptomatic infection to severe defects and disabilities, such as microcephaly, arthrogryposis, contractures, hearing and ophthalmic disorders, dysphagia, and learning difficulties5,6.
According to data from the Pan American Health Organization, there were 3,720 confirmed cases of CZS across 27 countries in the Americas up to 2018. The main concentration of cases was in Brazil (80%), followed by Colombia (6.7%)7. The WHO declared the end of the PHEIC and the disease is no longer considered an epidemic, meaning that the problem has moved away from the media spotlight. However, the old challenges remain and new ones are emerging as the affected children grow and new problems arise in various areas, including education, accessibility, and social inclusion.
Studies undertaken since the first cases arose have underlined the need to restructure the health system to tackle the complexity of the disease. In this regard, a number of advances have been made in the description of signs and symptoms, diagnostic testing, development of medications and vaccines, and childhood stimulation. However, a range of publications addressing the etiopathology of the disease and children with microcephaly have blurred the direct and indirect effects of the syndrome on the lives of their families.
Studies with family caregivers of people with disabilities have shown that caregiving has various impacts that encompass various contexts of everyday life, including physical, psychological, and financial burden, uncertainty over the future, and difficulties accessing services. Aspects related to resilience capacity and feelings associated with the benefits of the role of caring were also highlighted8–10.
Bringing up, caring for, and accompanying the development of children with chronic diseases requires mobilization and changes in family dynamics, increasing care demands. Six years after the identification of the first cases of CZS, what impacts on the lives of these families have been identified, considering that the arrival of these children occurred within the context of an epidemic permeated by uncertainties and unknowing? How does the news of the diagnosis and the daily care routine affect the dynamics of the lives of the families of children with CZS? How have these issues been addressed in scientific publications? This integrative review aims to describe and analyze the main evidence regarding these questions in the relevant literature on this topic.

Methods
We conducted a descriptive analytical study taking a quantitative and qualitative approach in the form of an integrative literature review. This type of review enables the researcher to analyze a phenomenon drawing on studies using different research designs, providing a more comprehensive understanding of the topic of interest11. We used the Problem, phenomenon of Interest, Context framework, suggested for reviews of non-clinical or qualitative literature12,13, to define the research question: How has congenital Zika syndrome affected different aspects of the lives of family caregivers of affected children?
A search was performed in June 2021 of PubMed, Embase, and the Virtual Health Library (VHL) using the following inclusion criteria: full-text original articles published after 2014 in peer-reviewed journals describing studies involving family caregivers of children affected by CZS and focusing on everyday contexts of life and life changes after diagnosis. There were no language restrictions. The search strategy (presented in the supplementary material) used combined descriptors from the Medical Subject Headings (MeSH) and Health Sciences Descriptors (DeCS).
After excluding duplicates, the records identified by the search were screened by reading the titles, followed by a reading of the abstracts and full-text versions of the articles to identify the studies that met the inclusion criteria. The selected articles were inputted into the Mendeley Reference Manager.
The information extracted from the articles was organized into three tables as follows: a) title, journal details, year of publication, languages, author(s) and affiliation; b) research design, instruments, study period, study location, and study participants; and c) study objectives and main findings. The latter were grouped into four impact categories: social, economic and material, subjective, and health.
The study did not require ethical approval as it was conducted using original published studies available in electronic databases.

Results
The research strategy yielded 666 records: 99 from PubMed, 240 from Embase, and 327 from the VHL. Five were removed because they did not have sufficient information for screening, two because they were published in 2014, and 52 because they were duplicates. The screening of the titles and abstracts resulted in 41 articles, 10 of which were excluded after reading the full-text versions, resulting in 31 eligible articles (Figure 1).

General characteristics of the articles
Box 1 shows the main characteristics of the selected articles. Only one study was conducted outside Brazil, in the Caribbean region of Colombia14. The remaining studies were conducted in the following regions: the Northeast – 23 studies, mainly in the states of Pernambuco15–21 and Bahia22–27; the Southeast – four studies in the states of Rio de Janeiro28,29, Minas Gerais30, and Espírito Santo31; and the Midwest – one study in the state of Goiás32. One study used data collected in the Nordeste and Southeast33 and another used YouTube videos as the data source, without specifying where they were produced34. Most of the studies collected the data between 2017 and 2018 (22 articles).
Twenty-two studies (71%) were qualitative, seven (23%) were quantitative, and two (6%) were mixed-method14,35. The most common data collection method used in the qualitative studies was semi-structured interviews, with one study using a psychoanalytic approach23 and two studies using ethnographic methods20,34. The quantitative studies employed different collection instruments, with the majority using standardized scales.
The primary data were provided by family caregivers of children affected by CZS. Study participants were predominantly mothers, referred to by 21 articles. Only two articles focused on aspects related to fathering, with fathers being the only participants of these studies25,36.
Most of the articles (22) were published in Brazilian journals and 18 were published in both Portuguese and English. The articles published in international journals were written in English, except for one article by Brazilian researchers published in Portuguese in a Colombian journal30. Nursing journals accounted for most articles (14 or 45%), followed by public health journals (7 or 22%).
Most of the articles involved various authors (average of six authors per article) and national and/or international institutions. Some Brazilian studies involved researchers from outside Brazil (the United States and United Kingdom). Only one article14 was written exclusively by researchers from outside Brazil (Colombia and Spain).

Impacts of congenital Zika syndrome on families
The objectives of the selected studies focused on understanding experiences and perceptions related to family dynamics and the impact of the diagnosis of CZS, including aspects such as mental health, quality of life, adaptive challenges, parent needs, coping strategies, and therapy.
The study findings were grouped into the following categories: social, subjective, economic and material, and health. Although these aspects are interrelated, we chose to synthesize the findings into categories to illustrate the most common impacts.
a. Social impacts
The findings show that having a child with CZS directly impacts the lives of families, especially that of mothers, leading to changes in routines and family dynamics. Overburdening, exhaustion, lack of time, and an overlap between domestic tasks and caregiving were some of the impacts highlighted by the articles16,17,21,22,25,27–32,35,37,38.
Scott et al.20 highlighted that women were practically obliged to take on the role of caregiver, resulting in home isolation and the interruption of personal projects. Melo et al.15 analyzed the caregiving process using the concept of biographical disruption, which is commonly used in medical anthropology to interpret the consequences of chronic illnesses. The authors point out that although women are not themselves ill, their lives are fundamentally affected by their children’s disabilities.
The women also mentioned the interruption of personal projects, such as work and career, and changes in routine activities and habits. The findings also highlight that caregivers frequently fail to care for themselves, sacrificing rest and sleep and social activities with friends and family16,21,22,25,26,31,35,39,40. Social support is provided by women across different generations, with grandmothers, aunties, and sisters being the main family caregivers. Although often limited, this support network is essential to allow mothers engage in personal projects15.
With regard to solidarity among women, Scott et al.20 emphasize the complementary support role of mothers’ groups, widening the scope of possible responses and helping women to cope better with the lack of or ineffectiveness of state actions15. Mendes et al.29 highlight that this articulation between women and consequent political mobilization strengthens both individuals and groups. Sá et al.16, Kuper et al.33, and Lima et al.19 emphasize that support networks can act as a protective factor for families and caregiving. Teaching other family members how to care for the child is essential to ensure that children receive care when the mother is absent22. Some authors32,29,39,24 highlighted that the responsibility for caregiving falls mainly on the parents, who find it difficult to find people they can trust to care for their children. The studies also report that a lack of understanding of the burden of caregiving can result in the absence of family support networks and consequent lack of support for caregivers.
Impacts on the dynamics of the family and couple were also highlighted by some studies, including the interruption of plans to have more childen32, differentiated treatment in relation to siblings21,36, and drifting apart or coming closer together, resulting either in conflict and break ups or support20,21,26,27,30,31,36,39.
Fathers/husbands/partners were less inclined to contribute to domestic tasks and care20,36,30. When they do contribute, their participation is seen to be an attitude that should be valued and praised, unlike women, whose care role is taken for granted20. In some cases, the paternal care role is sacrificed, with the argument that the man should play the role of provider and conciliate family and work30,36.
b. Subjective impacts
The majority of studies identified that family members (especially mothers) experience a diverse range of feelings from the moment that the news of the diagnosis is received and throughout the process of development of the syndrome. The feelings identified by the articles were grouped into the word cloud in Figure 2, highlighting emotions such as guilt, fear, loneliness, uncertainty, stress, anxiety, adaptation, and prejudice. These feelings arise from the experience of living an epidemic that affected newborns and causes disability and slows down neuropsychomotor development. This is compounded by the lack of information on the prognosis, strategies to deal with the situation, and government support. Hamad et al.38 highlight positive feelings such as patience, love, coping, and adaptation to an unexpected situation, while Lima et al.27 and Melo et al15 reported will power and determination and solidarity and resilience, respectively.
Fourteen articles mentioned the impacts of the diagnosis on families14,15,20–23,25,27,29–31,34,36,37. Melo et al.15, Vale et al.34, Scott et al.20, and Félix et al.36 suggest that having a child with CZS shatters the usual expectations of a pleasant motherhood. The image of a child with a disability contrasts with the ideal of the expected child, triggering feelings of grief and loss. Vale et al.34 point out that families who learnt of the diagnosis from an ultrasound during pregnancy feared for the future with an anticipatory sense of failure, loss, and pain. However, these feelings were replaced with a sense of triumph upon unexpectedly hearing the baby’s cry at birth. Félix et al.36 discuss the paternal function and invisibility of fathers, who can also be badly affected by the news of the diagnosis, emphasizing that fathers of CZS children are prone to depression.
Adaptation involves all areas of family life29 and everyday experiences bring uncertainties, surprises, and shared learning15,22 (“learning to live with the problem”, “learning by experience”). Knowledge gained from the everyday practice of caring frequently contradicts the advice received from health professionals, who often lack the necessary skills and knowledge and give wrong prognoses14,15,31.
Spirituality and religion were highlighted both as a source of family support and strength for coping with difficult moments15–17,19,21,24,25,27,29,36,38 and as a basis for interpreting the situation, relating it to punishment, divine providence, and/or the sacralization of children and motherhood15,28,34,38.
c. Economic and material impacts
The articles show that job loss was one of the main consequences of having a child with CZS in Brazil15,16,20,24,26–28,35,39–42. Care demands combined with constant visits to health services interfere with work activities, meaning that family caregivers are often forced to leave or are dismissed from their job.
Increased household expenses were also reported by some studies16,20,27–30,36,39,40, which, combined with unemployment, led to a decrease in family income and impoverishment,15 negatively affecting maternal mental health41. A study by Kotzky et al.42 found that roughly 72% of caregivers of children with developmental delays had difficulty covering basic needs, compared to 31% of parents of children without delays. Lima et al.19 highlighted that job security was a protective factor promoting well-being and the strengthening of families.
Increased expenses were related to a series of adaptations, including moving home or reorganizing the residence to reduce costs and improve access to social services, purchase of medicines and medical supplies, travelling to health services, special diets, and purchase of toys for children with special needs15,16,20. In response to difficulties accessing resources, some families improvised alternatives to the instruments and equipment recommended by doctors and therapists20.
The new reality led families to seek ways to increase their income and mobilize financial, material, and relational resources15, including social services, income, housing, and employment benefits. With regard to housing, Sá et al.16 highlighted the existence of housing programs for low-income families and non-homeowners. The mobilization of support and partnerships by mothers’ groups also resulted in material gains and alternative sources of income through training and capacity building20.
The cash benefit program Benefício de Prestação Continuada, introduced by the National Social Assistance Policy, was the main government benefit received by the families. However, some articles highlighted difficulties accessing this benefit35,44 and Scott et al.20 mention that the eligibility criteria can affect other benefits/income, such as pensions and work, given that working mothers are not eligible to receive the benefit.
d. Health impacts
All studies that used quantitative and mixed methods, except Freitas et al.32, reported mental health impacts, including a general decline in mental health, common mental disorders, depression, anxiety, and stress43,18,41,42,44,33,14,35.
Lima and Souza43 found a correlation between higher number of children and poor maternal mental health status. Subjective well-being scores showing negative effects and fatigue were also related to poorer maternal mental health. Studies also suggest that high parenting self-efficacy scores (based on a parent\'s belief in their ability to perform the parenting role successfully) are a mediating and compensatory factor for maternal mental health. These findings suggest that the development of strategies to strengthen parenting self-efficacy by health professionals is important for promoting family mental health.
Common mental disorders were identified in more than half of the mothers investigated by Reis et al.41, who found an association between job loss after the birth of children with CZS and mental health problems. Using the same instruments, Bulhões et al.35 observed that 10 of the 15 mothers who participated in the study showed symptoms related to common mental disorders. The study also used qualitative methods to investigate contexts of life, showing a predominance of depressed mood and anxiety, somatic symptoms, low vital energy, and depressive thoughts.
High or clinically relevant stress levels were found in 13% of the family caregivers investigated by Pereira et al44, who also observed a relationship between stress and job loss, corroborating the findings of Reis et al41. Women with high stress levels were five times more likely than those with normal levels to experience difficulties keeping a job and covering basic household expenses.
Williams et al.18 found various levels of depression in family caregivers – the majority of whom were mothers – with 40% showing mild to severe symptoms. Symptoms of depression were more common than symptoms of anxiety, with 24% of respondents showing mild to severe symptoms of the latter. The authors also observed an association between levels of anxiety and depression and lower family resources and higher parenting stress. Kotzky et al42 reported that 17% of family caregivers of children with CZS had moderately severe or severe depressive symptoms. Depressive symptoms were associated with lower income and greater developmental delay. The findings also showed that the most commonly reported depressive symptoms were feeling tired or having little energy and poor appetite or overeating.
In a study comparing mothers of children with and without CZS, Kuper et al.33 found that depression, anxiety, and stress were very common among mothers of young children in Brazil. The authors also observed that mothers of children with CZS are particularly vulnerable to mental health problems and that social support acts as a protective factor. In the study conducted in Colombia, Romero-Acosta14 reported lower levels of general health and worse mental health in women whose children had microcephaly. Maternal self-perception of health and anxiety were worse in the assessment conducted in the second year of life of their children.
The qualitative studies also reported health impacts, including mental health problems, such as stress16,30, loss of control16, reactive depression23, and distress31, and physical problems, including overburdening, physical exhaustion, nutritional problems, inadequate patterns of activity and rest17, and fatigue36.
The studies also mentioned aspects related to the structure and provision of health services. Scott et al.20 highlighted failings in state services, resulting in difficulties accessing care. Felix and Farias36 reported that psychosocial care services and policies directed at families of children with CZS often fail to include fathers, while Freitas et al.31 highlighted difficulties in accessing health services among families living far from large urban centers and feelings of guilt among caregivers reinforced by the stance of health professionals.
In contrast, Vale et al.34 reported that the support and advice provided by health professionals helped reduce feelings of guilt. Bulhões et al.21 highlighted that therapeutic groups were important spaces for welcoming and supporting families, while Lima et al.19 underlined that frequent appointments with health professionals can help strengthen families.

Discussion
Despite the large body of literature on Zika45, studies on the contexts of life of families of children with CZS remain relatively scarce. The majority of the studies analyzed by this review were qualitative, focusing on the narratives, experiences, and perceptions of reality of the study participants. These methods appear to gain special significance when the object of study is part of a diverse and interconnected field.
Although the present study focused on health journals, the analyses and methodologies drew on theoretical frameworks from the social sciences and humanities. In addition to disease and health-related aspects, the articles explored the interface between these elements and social, political, ethical, and economic issues. This area constitutes an important niche within the literature, given that a large proportion of studies on Zika are from the field of biomedical sciences51.
The findings of this review corroborate the results of studies focusing on caregivers of other dependents, which highlight physical, psychological, and financial burdens, as well as uncertainty, social withdrawal, and difficulties related to health services8–10. In the case of other types of disabilities, the caregiving process frequently tends to be a lonely experience, with caregivers often taking some time to meet fellow caregivers dealing with the same problem during the process of seeking diagnosis, care, and information.
Caring for children with CZS has several distinctive characteristics. The media coverage of the epidemic brought visibility to this generation of affected children, also increasing the attention paid to families of children with other disabilities and rare diseases, who have long battled for spaces of care for themselves and their children20.
The CZS epidemic in Brazil disproportionately affected poor families, complexifying lives already marked by various forms of exclusion, bringing to light underlying intersectionalities. The hardships faced by these families demonstrate the neglect that pervades social and economic structures and health, social, and basic sanitation services, while at the same time underlining the urgent need for action to tackle inequalities55–57.
The central role played by mothers in family caregiving identified by practically all the articles analyzed by this study evidences an alliance between women manifested in support networks, especially family and community networks. The exhausting routines endured by women illustrate the maintenance and reinforcement of gender inequalities, where motherhood and care are defined as a condition of female existence. This configuration limits their choices, resulting in biographical disruption15 and the interruption and readjustment of life projects, unlike the men in the families of children with CZS47,48.
The agency of these women has challenged the tone of tragedy broadcast by the media and the scientific race to combat the “global threat”58. They are women who have resignified their lives, their trajectories, and their projects, coming together in associations, constructing and sharing knowledge, and “going where they need to go”15 to claim their rights. They develop remarkable resilience in the face of an exhausting routine that affects not only their children’s but their own health. However, these women are able to see beyond the burdens to the benefits and positive feelings associated with the caring role in a process of renunciation of self-care in favor of caring for the other9.
Theoretical feminist literature and the political discussion surrounding gender equality and sexual division of labor have highlighted the role women play in caregiving. For a long time, the biological functions of gestating, giving birth, and breastfeeding were linked to caring, strengthening the understanding that the activity is intrinsically feminine49.
While being an essential part of human development, both in terms of learning and socialization, the act of caring has commonly been distanced from the notion of work. Like other domestic tasks, caring is understood to have less value and often looked down on and rendered invisible, both within the family and from a relations of production and social reproduction perspective49.
In her analysis of the work of caring for dependents, Kittay50 emphasizes that this type of work, whether imposed or not, has traditionally been assigned to the women in the family. It is generally unpaid or underpaid and has a greater toll on people who suffer racism, poverty, and other forms of inequality. Despite the gendered nature of dependence, motherhood, and care, there is nothing that justifies assigning the caregiving role intrinsically, inevitably, or exclusively to women.
The social media commotion around the CZS epidemic put the affected children and the women involved in their care under the spotlight; however, they share their citizenship with many other women and people with disabilities. It is therefore important to consider that, as highlighted by both Kittay50 and Tronto64, the act of caring encompasses moral, psychological, social, cultural, economic, political, technical, and normative aspects. Caregiving should be understood as a democratic value that affects the whole of society rather than an exclusively dual or private relationship defined within the families and personal networks that include dependent persons. This dimension of life should treated as something to be defined at the heart of political decision-making and tackled from the perspective of social justice.

Conclusions
Responses to public health emergencies employing exclusively biomedical strategies focused on infectious agents and disease treatment have been insufficient. It is necessary to broaden the perspective to include life contexts and understand that public policies are more effective when they take into account the reality of the people affected.
The results of this review provide an initial broad overview of this issue, helping understand the burdens faced by family caregivers of children with CZS, in particular women. This review has some limitations. First, it is possible that the search missed some studies. Furthermore, the knowledge on this disease and associated problems is under construction and new challenges and impacts are likely to be identified as the children grow up.
It is noteworthy that few studies referred to the siblings of the children with CZS and those that did so only mentioned them indirectly. Part of the literature on childhood chronic diseases or disabilities address impacts on the lives of siblings59,60. It is suggested that future studies address this issue, considering siblings born both before and after the birth of the child with CZS.
It is essential to learn from the existing literature. The studies analyzed by this review point to certain resources and coping strategies that appear to act as protective mechanisms, minimizing the impact of CZS on the various dimensions of life of the people directly involved in caregiving, including: keeping jobs and maintaining family income; social support networks, including creches and family support service; and psychosocial support and strategies that strengthen parenting self-efficacy.
Although CZS is no longer considered an epidemic, new cases continue to be reported61,62. However, Costa et al.63 estimate that the fatality rate is approximately 10%. It is important to understand family dynamics have been affected by the arrival and loss of these children when “the issue is no longer talked about”.
The challenges are many. The realities presented here are compounded by a previously unimaginable context of an overlapping COVID-19 pandemic, resulting in restrictions and impacts felt by the whole of society, especially by the families of children with CZS. This raises other important issues, including the importance of integrating traditional health surveillance and the surveillance and care of chronic diseases such as CZS.


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