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

Abstract 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.

CZS is defined as the presence of microcephaly or other neurological, visual, motor, and hearing complications resulting from Zika virus infection. 4 The syndrome strongly affected socioeconomically vulnerable communities, many of which are neglected by public authorities. 5 In Brazil,216  confirmed, and those children were being supported by specialized childcare and early stimulation practices. 6 The prevalence of live births with CZS was higher among mothers aged 24-40 years who were non-white, had no higher education, were living in the northeastern region of the country, and reported to be single or living with a steady partner. 7 Considering this background, these mothers and their children are exposed to a life of great difficulty. Special health policies are needed to address these matters, such as inclusive access to daycare centers and schools, multiprofessional monitoring, and special transportation for therapeutic care. 8 Families of children living with CZS face demands for specialized care, as well as a lifelong responsibility for care. 9 For mothers, an accumulated burden of factors influences daily care of children with significant disabilities. This burden must be discussed, including topics such as economic impact, lack of access to information and appropriate health care, prejudice, marital tension, limited family support, and uncertainty about the future for their children.
Few studies have discussed the issues surrounding the care of children with CZS or have given voice to women who deal daily with the epidemic. The aim of the present study was to describe, from the perspectives of caregiving mothers, the repercussions on their lives after confirmation of CZS in their child.

| MATERIALS AND METHODS
We conducted a descriptive-exploratory study with a qualitative approach in the state of Espírito Santo, southeastern Brazil, with 25 women who had a child with CZS. The state covers 46 095 km 2  The reasons women (n=14) refused to participate or could not be included in the study were as follows: four women moved out of the state in search of better health care for their babies; two women were underage mothers who did not obtain parental consent to participate; one mother was living on the street and was not found; one mother gave up her child to a shelter and was deprived of parental power; the babies of two mothers died in 2017 due to complications of CZS; one mother's baby was hospitalized in the Pediatric Intensive Care Unit and she was unable to participate owing to emotional distress; and three mothers declined to give an interview.
For data collection, interviews were conducted using a semistructured script with the following guiding questions: "How was your pregnancy? How was your baby's birth? Tell me your experiences, perspectives, and feelings when caring for your child in your daily life?
How has your life been after the birth of your child?" The interviews also collected sociodemographic, clinical, and obstetric history data from the participants, such as age, marital status, education, occupation, family income, social benefits, number of people in the family, and number of pregnancies. Data on details of arbovirus infection such as diagnosis of dengue, diagnosis of other cases of Zika in the family, use of repellent during pregnancy, presence of health insurance, and place and number of prenatal visits were also collected.
Interviews took place individually and were conducted between May 1 and September 29, 2017, audio-recorded digitally, and authorized by the participants. All women chose their homes for the interviews; in addition to the digital recording device, a paper diary was also used for notes and observations captured during the encounters.
All of the interviews were transcribed and analyzed according to thematic content analysis. Thematic analysis follows a trajectory that consists of categorization, inference, description, and interpretation of data. Categorization requires great knowledge from the researcher to determine an adequate classification plan. Inference is made when something is logically deduced from the content being analyzed.
Description is the listing of characteristics of the text, summarized after analytical treatment, and interpretation is the meaning given to these characteristics. 12 The research project was approved by the Research Ethics

| RESULTS
After analyzing the data, two themes emerged to group the categories according to the analysis matrix (

| Social inequalities and poverty
The profile of the interviewees showed that these women lived in poverty and faced socioeconomic difficulties and various vulnerabilities before the existence of CZS in their lives.
The struggle to survive, provide treatment, and meet the needs of the family-heightened by having a child with CZS-was clear in the narratives of many mothers, as observed in the statements below:

M2
Precarious housing situations and unhealthy environmental conditions in which the mothers lived were identified, such as problems with garbage in inappropriate places, open sewage, poor basic sanitation, and consequently the presence of many mosquitoes. Some women emphasized that it was not easy to avoid mosquito bites.
Here, it was a focus, there was a lot of mosquitoes.
Sometimes we were talking and saw the house full of mosquitoes.

M6
There was always a lot of mosquitoes here because of the trash.

| Gender inequality
The interviews revealed that before the birth of the baby with CZS, several mothers used to work or study. These tasks were replaced by the care of the child.
I was a general service assistant, now a sales clerk. But if my son had given me the chance, I was going to work as a dental assistant.

M6
I went up to seventh grade and I got pregnant too early, I had to quit when the baby was born. I want to go back to school, but now it's kind of difficult.

M11
Coercion to quit a job or dismissal after the birth of the child with CZS was a constant in the narratives of the women. A painful and difficult choice between the routine of caring for their child and the responsibility to work marked their lives.

M8
Not only did partners blame the mothers for the child's illness, as described by M8, health professionals also judged them to be responsible for preventing Zika, as described:

M23
Not all women received a diagnosis of CZS during pregnancy because it was an unknown disease and, as such, there were delays in prenatal diagnosis. Many received the traumatic news intrapartum or immediately postpartum, revealing the poor ability of health professionals to deliver difficult information in a sensitive way.
The doctor was the one who caused me a shock. The doctor said that she was not going to see, she was not going to walk, she was just going to be a vegetable child, that is, the rest of her life and that she would need me. So she gave me that shock, and I'll be honest, I wanted to "jump" over the doctor.

M8
The doctor on my side saying, "You know your daughter has microcephaly." I said: "No, I did not know." Like that, I was still expecting hydrocephaly. Then she said: "Yes, she has it". I said:

| Maternal isolation and mental health
After the shock of the diagnosis the mothers reported changes to their daily lives. The routine was solitary and tiring; feelings of invisibility and isolation were present in the reports.

| Experiences of stigma and prejudice
Mothers reported being questioned about their child's physical appearance from people they encountered:

| DISCUSSION
The results of this study reveal the challenges faced by women living in poverty-stricken areas who have given up their lives to care for children directly affected by the Zika virus epidemic. Some of the mothers experienced domestic violence and were abandoned by their partner; they reported a lack of sensitivity and care skills by health professionals at the time of diagnosis; felt blamed for contracting Zika virus and responsible for family planning; and suffered from the stigma of having a child with CZS and exhausting therapeutic itineraries seeking care for their children.
The social inequality and poverty described by the women was exacerbated by having a child with CZS. Furthermore, a link between CZS and low socioeconomic status has been suggested. A recent study showed a lower prevalence rate of microcephaly among families from wealthier socioeconomic strata, showing a strong association between higher prevalence of microcephaly and low socioeconomic level. 15 It is important to recognize that abortion is illegal in Brazil 16 In other words, economic challenges have a greater influence on the mental health of primary caregivers than the daily care of the child.
In the study by Santos and Farias, 17 financial issues were revealed by mothers as a difficulty that generated anguish; moreover, the majority of families suffering from the consequences of Zika virus infection were economically vulnerable. These unfavorable socioeconomic conditions make it even more complicated for mothers to care for children affected by CZS, which may compromise the child's development. 7 Vulnerable groups suffering from the burden of mosquito-borne diseases, such as Zika, are excluded from formal jobs and fair wages, have poor quality of life, and their housing is characterized by unhealthy environmental conditions. 18 In Pernambuco-the state greatest hit by the Zika epidemic-most affected families lived in extreme poverty and, for the most part, had no water supply or garbage collection and inadequate sewage and drainage. 19 This type of environment promotes favorable conditions for the mosquito to reproduce. Therefore, taking care of the environment and investing in basic sanitation as a basic human right is the most effective way of eliminating mosquito breeding sites. 19 Considering gender inequality, women in the present study experienced an unequal burden of childcare and job loss resulting from lack of a support network. Balancing a professional life and domestic responsibilities continues to be a problem experienced by the majority of women in Brazil. Several national surveys have shown that the number of hours that women spend doing domestic tasks, even while employed in paid work, is much higher than for men. 20 In patriarchal cultures, such as Brazil, domestic work is considered the natural role for women. 20 Caring for a child with CZS is an additional burden on women who are already overloaded. Faced with this situation, mothers tend to abandon their professional activities, which reduces the family income at a time when there are high costs associated with a child's treatment. 21 In Brazil, those aged 25-29 years who are unemployed and not in education are primarily young mothers who have had to abandon work and study to take care of their children. Public policies that support women to reconcile work and mothering are lacking. 20 In the present study, gender inequality also manifested as conjugal infidelity, abandonment, and physical and verbal aggression by partners. Similar data have been described where approximately half of the women affected by CZS in Brazil had no partner, were single, or separated. 22 In an ethnographic study conducted in northeast Brazil, Diniz 23 reported that abandonment of spouses and partners after learning that the baby had neurological problems was common among mothers directly affected by CZS. Brazilian authorities at all levels should take steps to ensure that policies aimed at preventing unplanned pregnancies, Zika infection, and other sexually transmitted infections, and caring for children with CZS do not reinforce harmful gender inequities regarding male and female responsibilities, relationships, and family life. 25 Receiving a diagnosis of fetal malformation is a difficult moment for the whole family, often causing shock, fear, and denial. 26 The earlier the diagnosis, the less likely the risk of irreparable damage to the mother-baby relationship since there is more time for a woman and her family to adapt to the new reality. [27][28][29] In the present study, many women were diagnosed at an advanced stage of pregnancy or even during birth, which heightened the shock of receiving the news.
Lack of preparation of health teams and absence of protocols and robust manuals are thought to have contributed to late diagnosis and poor investigation of suspected CZS cases, creating fear and contributing to mothers' suffering at the onset of the outbreak. 30 The poor ability of health professionals to communicate news of the malformation may have heightened the pain and despair of women in the present study and influenced their reaction to the situation.
In a recent Human Rights Watch survey of women who received news of a child's developmental anomaly at birth, their experience of how they were treated by doctors and nurses had a profound psychosocial impact on many women. 25 These mothers said that the first few hours and days after the birth of their babies were marked by great anxiety, uncertainty, and doubt, but many of them did not receive complete diagnostic information or psychological support or counseling to help them cope with the news. 25 Other studies have also revealed the lack of preparation of health professionals at the time of CZS diagnosis. 24 It is believed that during the first wave of CZS, health professionals did not want to take responsibility for the diagnosis. 27 Therefore, effective communication, interpersonal skills, and humanization of care must permeate the actions of health professionals.
After the birth of their children, women in the present study became the primary caregiver. Several authors have reported that in cases of children with special needs, mothers are the main caregivers, centralizing activities in the home, as well as caring for the child. [31][32][33] With the burden of care focused on them, many women lose their personal identity, especially those with no support network. Due to the lack of time to perform other activities, women end up withdrawing and isolating themselves from leisure and social tasks, increasing their risk of mental illness. 34 Mothers may find it difficult to trust others to care for their child in their absence, which can lead to psychological illness as well as physical exhaustion. 21 Freitas et al. 35 evaluated the impact on families of children diagnosed with microcephaly caused by the Zika virus. An impact scale revealed high scores for areas where there was greatest impact on the family, such as difficulty finding a reliable person to take care of the child, no one to understand the burden carried, and thoughts surrounding not having any more children because of an existing child's health problems. 35 Another area that increased the suffering of women in the present study was prejudice and stigma. Insensitivity and lack of social support meant that women did not want to "share the moment" with the community which, according to Osório and Valle, 36 is a risk factor for the process of biopsychosocial illness.
In the face of the stigma surrounding children with special needs, psychological support and the help of social workers is recommended to parents. Guaranteeing this assistance in the Unified Health System (SUS) is a particular challenge in Brazil. 37 Many mothers of children with CZS regularly face insensitive and uninformed questions and comments about their babies. The cumulative effect of several small incidents weighs on these mothers and contributes to mental illness and social isolation. 25 In addition to the burden of being sole caregiver, mothers face difficulties when they live far from the capital city and must commute to seek treatments for CZS. A study from Pernambuco showed the unreliability of or lack of transport from the countryside to treatment centers, in line with the findings of the present study. 38 A similar situation in the report from Human Rights Watch describes how mothers struggle to access services for their children due to centralization of health service providers in urban areas, irregular transportation, and government bureaucracy. 25 In conclusion, the repercussions of CZS on the lives of women in the present study were a huge burden, with important markers of social inequality and poverty revealed in the mothers' reports. Gender inequality also marked the epidemic, along with an unequal burden of childcare, experiences of stigma, and exhausting therapeutic itineraries in search of medical care for their children.
The epidemic has created additional struggles in the lives of already vulnerable women. Brazil's fragile public policies on women's health do not reach those affected; therefore, robust public policies to support these mothers need effective implementation given that babies born with CZS need long-term care and support. Public policies are needed to reduce working hours, provide access to daycare centers, and create better infrastructure, along with social policies that encourage sharing of domestic tasks and care between men and women.
Psychological support for mothers and other family members must

CONFLICTS OF INTEREST
The authors have no conflicts of interest.