Micro-level factors
Participant Characteristics
A total of 34 women, with ages between 22 and 41 years, took part in the study. Table 1 displays the sociodemographic characteristics of the participants. Twenty women were married while fourteen had long-term partners. The women resided in Florida, Massachusetts, Washington D.C., Puerto Rico, and several localities of Brazil. Brazilian, Hispanic, and U.S. ethnicities were self-reported by study participants. Information of the socio-economic level of participants was not directly collected. However, some information could be inferred by the content of the interview and occupation of participants. They ranged from lower middle to upper middle class. All participants lived in urban areas. Eighteen participants had been pregnant recently or were pregnant at the time of the interview, while eight participants were planning to become pregnant, and eight did not want to become pregnant but lived in locations affected by Zika. Two participants were misdiagnosed with Zika while pregnant, one participant had a husband diagnosed with the virus while pregnant, one was suspected of bearing a child with microcephaly, and six participants had a positive diagnosis of Zika though not pregnant. All participants had at least high school education; eight hold Doctoral degrees, six hold Master’s degrees, six are in postgraduate studies, and ten had college degrees. Participant religious beliefs were the following: fifteen Catholic, eight Evangelist, seven Spiritist, three Agnostic, and one Atheist.
Emotional wellbeing
Reported effects of the Zika epidemic at the individual level included reduced physical and emotional well-being, feelings of isolation, sadness, and uneasiness. Interviewees had a strong feeling of uncertainty and mistrust concerning unknown factors surrounding the epidemic, which contributed to helplessness and distress. Fear, panic, concern, angst, and tension were commonly expressed. Maria, from Miami, summarized well her insecurity:
“So I had the feeling of not knowing what it was. I was protecting myself from a thing I do not know exactly what it is, what do I have to protect myself for? It was a very tense experience…”
Sometimes, the women voiced feelings of sadness, responsibility, shame, failure, and even guilt because of the pressure of having a healthy child. Pressure to avoid contagion led many women, facing the potential to be infected with Zika, to feel guilty and lonely. Ana C., for example, mentioned that she had feelings of failure due in part to government and media messages that blamed women who got bit by infected mosquitos as not careful enough to protect themselves. Many women expressed living in constant fear or anxiety of having to avoid or prevent mosquito bites from affecting their own health or that of their unborn child. As Katherina B. commented:
“We were not going to have any other kids after this and so this is really sad that it’s happening here, at this time, when I don’t really get to enjoy it.”
Behavioral changes
The daily routines of women were drastically changed by Zika. In order to protect themselves from the threat of the virus, women adopted behaviors that caused substantial changes in their social lives and personal wellbeing. They often sprayed themselves with chemical repellents throughout the day and wore long dresses and long sleeve shirts despite residing in tropical climates with warm temperatures. A significant adjustment to what should be considered normal routine behavior was described by Mariana S.:
“[I] bought a repellent and developed a routine that I put it on every time I showered. I used to put it on as if it were cream… like brushing your teeth and I would put it on every time I went outside. I tried to wear long clothes and not open shoes. I bought a product that I never used, to put on [my] clothes. [It] was very strong because, at the same time, these are chemicals to protect against Zika, but I'm also pregnant with a lot of chemicals all day long…”
The daily lives of study participants, as reflected in their social relationships and interactions with their partners, family members and children, were greatly impacted by Zika. They revealed that intimate relationships with partners suffered both emotionally and sexually, as the fear that Zika could be contracted via sexual contact caused a strain in the partnership. Women repeatedly reported feeling isolated from their partners, children, parents, relatives and extended families. Elimination of leisure, such as social and outdoor activities, also contributed to social isolation. Reports of disruption in their social lives and daily routines were common. Participant Marilyn G. details her personal experience:
“…It affected [the relationship] because [Zika] is a stress. You are worried, all the time if there is or isn’t a mosquito [present]… a constant focus of tension, the quality of life falls a lot because that affects the relationship. I had places that I would not go to… because I thought there could be mosquitoes.”
At the professional level, women placed their careers at risk by giving up growth opportunities such as attending meetings and job-related trips. Effects on the sexual and reproductive life included renouncing pregnancy or postponing their decision to motherhood, and in a few cases sexual abstinence as a form of protection.
Meso-level factors
Social Support
Women with varying levels of contact with the ZIKV showed solidarity. Testimonies of empathy, concern, as well as support for one another, indicate continuous conversations about the effects of the virus. Throughout the Zika epidemic, participants came to see themselves in other women who could potentially be infected by the virus, as Adela, from Brazil, stated:
“…here we only talk about it. [In Brazil] everyone talks about it. It has a climate, a very strange atmosphere. You cannot look at a pregnant woman on the street and not think, not imagine…”
Communitarian feelings, particularly among pregnant women, flourished because a sense of commonality developed due to fear of the adverse effects caused by Zika. The risks of Zika created a climate of sincerity among women to discuss scientific uncertainties, potential methods of prevention, and to provide informal counseling based on personal experiences. The unfounded or inadequate support from the broader community was replaced by the unity among women that had initially limited relationships with one another. Respondents demonstrated empathy with each other:
“…I saw people in solidarity with pregnant [women]… like [a young] girl at work…. Everyone worried about her. During high heat [temperatures] people worried… because she was all dressed.... They always asked her if she was okay. And she was pregnant with Zika before she knew she had it. She got Zika, became pregnant a few months later, and the baby was born normal." (Fatima, Brazilian).
Yet, many participants felt that these support networks were small, stemming from individual initiatives. This mutual solidarity happened to a degree in already established women networks, but there was lack of support from government agencies. In addition, the epidemic did not encourage women’s political or social activism. Many women were concerned only with their own well-being or that of people close to them. They did not step outside of themselves to mobilize and change women’s health, as Maria, from Brazil noted:
“Everybody remained more worried about their own micro-environment, what I can do to protect myself, what I can do to protect my future baby so that it does not have microcephaly. Very few joint actions, from women to women to women.”
There were contrasting experiences regarding stigma depending on where they resided. Participants such as Isabel from South America indicated no such stigma when discussing Zika infections:
“No, I do not see it like that, not like a social stigma. It is not only Zika that affects the population or classes…. The truth is public health policy, the lack of sanitation and hygiene; there are some favelas that remain near the river. There, they have mosquitoes in those places. They are more exposed.”
Conversely, women residing in the United States pointed out that stigma towards the ZIKV was, in fact, prevalent. In particular, if individuals were from Central or South America, there were questions about whether they could potentially be carriers of the virus. Lucia from Miami said:
“At the airport I felt kind of intimidated by big signs asking: do you come from South America?”
And discrimination played a part in feelings of stigma. Some women indicated feeling targeted for their ethnic background, as Maribel from Miami described:
“There are so many Latinos in Miami that they even brought Zika…”
In sum, while there was equality among the women when discussing their experiences with the Zika epidemic, there were perceived inequities in its outcomes.
Sources of information
From news programs on television to a variety of online platforms - wherever or however the information could be retrieved- participants consumed information from numerous media sources as the cases of Zika infections increased. Some, like Rosa from Puerto Rico, concentrated on accessing sources of information that they considered dependable or that fit into their daily life needs:
“As I use the internet a lot, I see more news on the internet. The newspapers, I read a lot of newspapers on the internet. I was educated enough with that, but television I do not see much. I am more into computers."
Social media played an important role in not only providing access and sharing of resources among women’s networks, but also information on how the virus spread. Much of the information available on such media outlets led many to misperceive it as concrete, well-defined and accurate facts. Individuals in different countries in the Americas acquired similar knowledge and perceptions on how to avoid Zika from similar media sources. However, in some locations the information available was limited, especially if mosquito-borne viruses were not usual, as in the United States. For example, Gloria, from the U.S., affirmed:
"It seemed to me that here in America, as they did not have as much experience, they did not have so much data... that the biggest information was from cases in Brazil that were like further from having implications to the U.S., etc...”
The Zika epidemic was recognized as a media boom by all women interviewed. According to them, the presence of ZIKV almost immediately took over the airwaves, as Valeria from Brazil summarized: “It was like a boom that came out.” Nonetheless, just as quickly as the virus became known, the media boom was suddenly over and a complete disappearance of Zika news in the media ensued. Marina, from Brazil, recalled:
“Today I don’t see that anymore… for example in Rio. If you were to look at the TV campaigns or any of those things, it disappeared. It’s only going to re-appear during the summer.”
Much of the informational material disseminated during the outbreak of Zika focused primarily on prevention methods not based in scientific assessment of the epidemic; there was limited access to scientific information with a more comprehensive approach to the disease. In fact, many participants, such as Beatrice, from Brazil, viewed the evidence available to the public as incomplete:
“One also looks for what one needs, tranquility, but what I think is that there was not much advanced scientific information, studies that really gave information about this. It was more focused on prevention.”
A number of women reported encountering alarmist materials as the epidemic expanded. Many rumors appeared, causing quite dangerous levels of chaos and mistrust. Participants recalled speculations that included rumors such as “Zika is a government invention” or “Monsanto introduced the mosquito.” Thus, women felt trapped in the rumor mill that Zika produced. Many were unsure about where to turn for reliable information on the virus or wondered if the sources available were trustworthy.
Access to social media also solidified the ability of individuals or groups to spread false rumors, detrimental and harmful to women’s health. Personal opinions became concrete facts leading many not to comprehend fully the severity of Zika along with the true consequences of infection, as Christina, from the U.S., claims:
“…they are telling other women in those groups ‘It’s not a big deal’ and I am like ‘You are not a medical doctor.’ Other groups that I am part of, they are very much concerned about it, and they try to help each... send articles to a few moms that were pregnant for them to be aware.”
As a result of the rumors and unsubstantiated information, a sense of suspicion developed towards the news or updates that appeared in social media. Furthermore, there was much confusion as to whether the virus was truly detrimental and dangerous or if the media stories were gossip or “fake news.”
Macro-level factors
Distrust of Governments
The perceived role of governments and public health organizations, and their past responses to citizens, is a major factor in explaining the negative attitudes of women toward the Zika epidemic. Participants argued that the public health system placed the responsibility of preventing any type of health complications from Zika onto women who had limited abilities to eradicate mosquitoes. Many women stated that these measures were invasive, while creating the perception that they were the sole determinant of whether or not they contracted Zika. Their perception was that public health officials focused on eradicating the vector (mosquito) and on preventing microcephaly, both of which placed the burden of prevention on women.
In the case of Puerto Rico, women reported an adversarial relationship between the government and the population, even in the face of an extreme health emergency. The political history of the island seemed to shape the attitude of women regarding the Zika epidemic, an example of which is seen in the words of Camila:
“[People are] skeptics, because in Puerto Rico the feds are always saying things to scare people and they have used Puerto Rico as guinea pigs for a lot of clinical trials... People do not trust any medical related issue from the government.”
Past political tensions continue to mold the lack of trust of Puerto Ricans in government recommendations regarding public health. There was a distinct sense of vulnerability among Puerto Rican participants since they could not trust official government information, which was evident when Zika landed in the island. According to Elena:
“Somehow, in truth, the government did not want Puerto Rican women to get pregnant. I do not know. It may or may not be [true]. In truth, I do not explain myself well, but I feel it [Zika] was an exaggeration.”
Some Brazilian participants also viewed Zika with skepticism and felt a sense of resignation towards the government’s responses to control the virus. They indicated that during past mosquito-borne epidemics the measures taken to combat the diseases were similar in nature, and the newly identified virus would not bring about any difference due to a supposed sense of normality within chaos. Maria makes this view clear:
“…it’s like violence in Brazil. You read about it and you get afraid. Coming back is like you adapt to that. It's not too scary, you are not apprehensive all the time. It's like with my friend. We were worried but when you come here, you are back to your routine.”
Inequities among Women Regarding Zika
Despite genuine gender solidarity for one another -given the possibility that malformations and developmental disabilities could occur - there remained ingrained elitism and social hierarchy in the views held by some women. Nevertheless, many participants clearly understood that the mosquito was a great equalizer. They realized that despite their relatively privileged socio-economic background, women from all backgrounds could be equally exposed, to a certain extent, to the virus. In that sense there was equality. But there was no equality in combating the epidemic. Essentially, the women understood that,
“…a mosquito bites anyone the same…. It does not understand what is rich or poor” (Josefa, Puerto Rico).
Some participants were quite aware of their privilege. They felt some guilt for their higher socioeconomic positions, which allowed them more access to information and better understanding of Zika. Although the ZIKV was an “equal opportunity virus,” socio-economic factor dictated the lives of women during the epidemic. Nancy from Miami pointed out clear indicators of privilege, even when accessing informational materials on Zika:
“I could use my network of colleagues and scientists to find out even more information like anything new that hadn’t necessarily been published yet… I really feel like I was lucky that I could do that.”
Participants from financially stable and affluent situations easily identified barriers facing poorer women that could create further challenges in their attempts to protect themselves against Zika, but social solidarity that would push for changes in women’s health rights or economic stability as a whole were not their major concerns.