Experiences of women with Zika virus (ZIKV) versus the provision of health services in two cities in Colombia: A qualitative study

Background In February 2016, the World Health Organization (WHO) declared the epidemic of the ZIKA virus (ZIKV) in Latin America to be a public health emergency. In Colombia, 11,944 pregnant women registered a ZIKV infection during the epidemic. So far, little is known about the experiences of women infected with ZIKV during their pregnancy, especially those relating to the provision of health services during the period of the epidemic. Objective To explore the experiences of pregnant women diagnosed with ZIKV infection about the provision of health services in two Colombian cities, considering the perspective of sexual and reproductive rights. Methods Qualitative study under the grounded theory approach, which uses semi-structured interviews as tools to explore the biographical experience of mothers during their gestation process and ZIKV infection, dividing the interview into two broad categories: before and during pregnancy. Results Twenty-two women were interviewed, 10 in Cali and 12 in Villavicencio. The average age at the time of pregnancy was 27.6 years. Most women were not planning at the time of pregnancy and the pregnancy was unwanted. Most campaigns focused on mosquito eradication rather than on sexual and reproductive health campaigns. The quality of health care was not sufficient, adequate, or appropriate. Also, the breakdown of the health system to deal with the pandemic was also noted. Some women were treated with disrespect by health professionals. Voluntary termination of pregnancy was inadequately advised, and women lost autonomy regarding decisions about their health. Conclusions In the health care of ZIKV epidemics, it is necessary to include the gender perspective, more specifically, sexual and reproductive rights. In addition, these epidemics must be addressed through a comprehensive, appropriate, and not fragmented health system, in which sexual and reproductive rights must be mainstreamed in all health promotion and prevention programs.

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The investigation was carried out under the criteria of resolution 008430 of October 4, 1993 of the Republic of Colombia [18], according to which it is characterized as "without risk" by being immersed in the category of studies using retrospective documentary research techniques and methods and, where no intentional intervention or modification is performed of the biological, physiological, or psychological or social variables of the individuals. Similarly, respect for human dignity was maintained and informed consent was obtained, in which aspects such as the objective, methodology, handling of the information provided, results, disclosure of the findings and the right to reply or not to questions and suspend the interviews when the participants so wish was observed. The protocol of the study was approved by the Universidad de los Andes and Pan American Health Organization ethics committee in their Acts No. 658 of 2016 and 2017-04-0042 of 2017, respectively.    Methods: Qualitative study under the grounded theory approach, which uses semi-structured 40 interviews as tools to explore the biographical experience of mothers during their gestation process 41 and ZIKV infection, dividing the interview into two broad categories: before and during 42 pregnancy.

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Results: Twenty-two women were interviewed, 10 in the city of Cali and 12 in the city of 44 Villavicencio. Information related to health service delivery during the ZIKV epidemic was 45 obtained. In addition, we analyzed data on the transformation of their pregnancy experience when 46 they were infected with ZIKV. Data were also obtained on the assimilation of the news received 47 during pregnancy, the impact of the products of gestation on their lives and in the dynamic of their 48 family, and, lastly, the social and cultural aspects, which determined the level of autonomy of 49 women in the exercise of their sexual and reproductive rights, beyond the context of the epidemic. Conclusions: In the health care of ZIKV epidemics, it is necessary to include the gender 51 perspective, more specifically, sexual and reproductive rights. In addition, these epidemics must

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The ZIKV was distributed in much of the Colombian territory, affecting cities such as Cali, Valle 65 del Cauca (1,018 masl) and Villavicencio, Meta (467 masl) [7,9]. These two departments occupied, 66 respectively, the first and eighth place in case reporting (suspected and confirmed) in the general 67 population with ZIKV, and, ranked first and seventh in reporting of pregnant women [7,9]. In 68 addition, they were characterized by having a good surveillance system and incorporating the care  is a knowledge gap that needs to be explored. This study is aimed to explore the experiences of 88 pregnant women diagnosed with ZIKV infection, with regard to the provision of health services in 89 two Colombian cities, to understand, in this way, how their transit was in the Colombian health 90 system, taking into account the framework of sexual and reproductive rights.

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Study design 93 With the aim of making an approach to the experiences of pregnant women infected with ZIKV 94 regarding the provision of health services, a qualitative study was conducted under the approach 95 of the Grounded Theory [16,17]. Using semi-structured interviews, which were analyzed through 96 a comprehensive and dynamic coding process that prioritized the discovery of emerging codes, we 97 identified relevant elements to understand the problem from a social and cultural perspective, 98 through the constant analysis and comparison of these discourses, as well as the construction of 99 analytical categories.

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In each one of these moments (before and during pregnancy), it was possible to determine the 101 provision of specific health services received by the pregnant woman. This allows the analysis of 102 these experiences not only to be related to the specific time of the ZIKV involvement, but, in 103 addition, incorporates elements that allow us to understand how they interacted with the health 104 system according to their social context and living conditions. methodology, handling of the information provided, results, disclosure of the findings and the right 113 to reply or not to questions and suspend the interviews when the participants so wish was observed.

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The protocol of the study was approved by the Universidad de los Andes and Pan American Health The information on the reported cases of ZIKV was provided by the Municipal Health Secretariats 119 of Cali and Villavicencio, through the SIVIGILA (National System of Public Health Surveillance) 120 information system.

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Two databases were obtained; one from pregnant women registered as suspected or confirmed 122 cases of infection with ZIKV and another from congenital defects that entered the health system 123 between 2015 and 2017. Both databases were reviewed to identify women who had been reported 124 as ZIKV cases, who had a possible outcome of a newborn with microcephaly, and who lived in 125 the cities of Cali and Villavicencio. We identified 39 women who were pregnant, registered as 126 suspected or confirmed cases, and was recorded as a possible outcome with microcephaly.

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The invitation to participate in the study was made by telephone, with the support of the Municipal 128 Health Secretariats. Of the 39 women contacted, 22 agreed to participate, 5 refused and 12 could 129 not be contacted due to incorrect registration data (Fig 1)   The instrument was organized according to the experience gained by the women in two moments: 138 the first period was labeled "before", in which enquiries are made about the structure and family 139 7 environment of the interviewee, as well as the situation of the context of pregnancy (e.g.: planned 140 or unplanned pregnancy) and on sexual and reproductive health habits prior to the pregnancy 141 The second period, during pregnancy, in which two central elements were investigated: the 142 experience of pregnancy and the health care received. This last element focused on aspects such 143 as the quality of care received (understood from availability, acceptability, accessibility, and 144 professional suitability [19]), screening test, treatments and recommendations given. Table 1 145 Characterization data General information and basic data of the interviewee for characterization.

Family context at the time of pregnancy
Inquiries about the structure and family environment of the interviewee as well as the context of her pregnancy. It also ascertains whether the pregnancy was planned or not, as well as the sexual and reproductive health habits prior to the pregnancy.

Pregnancy
Investigate for pregnancy detection, reactions of the woman and the family.
Health care Inquiries about the time when subject goes to the health service, causes and first interaction with health personnel during pregnancy.

Paraclinical studies, ultrasound, and medications
Inquiries about specific tests (ultrasound, labs, cytology) and times.

Times in care
Inquiries about control appointments to review results and specific moments of health care attention.

Zika
Investigates all aspects related to Zika, from the first-time subject hears about the epidemic, knowledge, imaginaries, access to information or prevention campaigns, diagnosis, reaction of partner and family, personal process, and related experiences.

Miscarriage -Elective abortion
Depending on the outcome, reasons why subject decided for the elective abortion, support received, experiences of the process and subsequent perception.

Conditions of home
Aspects related to the environment where the house is located (possible sources that generate risk of contact with the vector) and conditions of access to public services, health services and general conditions.

Information received
Information received during the epidemic such as training, participation in contingency plans, advisories.

Care process
Description of the health care process, inquiry into perception regarding the service, difficulties, positive aspects, recommendations, approach by health personnel of topics such as diagnosis and elective abortion.

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at home, several participants were accompanied by their partner or parents, who were asked to not 158 interact during the recording.

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Once the informed consent was accepted, the audio recording of the interviews was made for identification of emerging issues. Also, a code structure was created to be used by the encoders.

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The coding and analysis process were carried out with the support of the QSR NVivo 12® 171 software, facilitating the review and merger of projects, as well as the export of reports for the 172 analysis of results (S1_Fig).

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Because the data selected for this study were reported to the SIVIGILA, some of the case 175 experiences, which were not reported through this system, could be left out of this study.

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Additionally, as already mentioned, out of the 39 identified cases, we were unable to contact 12 of 177 them due to lack of information, or erroneous information in the registry. The aforementioned 178 generates the risk of leaving out experiences of women other than those exposed in this study and, 179 therefore, a variation in the results obtained. Here are the promotional and preventive activities received by women regarding contraception 208 before pregnancy.

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Of the 22 women interviewed, 17 were not planning when they became pregnant. Some of them 210 said they were not planning regularly for various reasons, including: considering that they did not  Mention was also made of social and cultural constraints, such as the lack of involvement of men 243 in sexual and reproductive health issues and the fact of exclusively holding women responsible for 244 issues related to contraception, which contrasts with their lack of autonomy to decide whether or 245 not to have protected sex with her partner [30,31].

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In the light of the above, it was found in the experiences of women that there was a lack of effective 247 strategies to contribute to their sexual and reproductive health before the epidemic.

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From the health care received, the information on pregnancy prevention was addressed, almost 249 exclusively, to women. On many occasions, this information was predominantly targeted at 250 women travelling to endemic areas and not at the inhabitants of these territories [32].

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In other cases, ZIKV was associated with diseases that had already had an incidence in the area,

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In turn, several of the information campaigns that were carried out had a more reactive than 258 preventive component and, therefore, many spaces designed to inform about care and prevention 259 during pregnancy were generated on a temporary basis, in response to proliferation of ZIKV 260 infection. As a result, it was evident that these campaigns were not conceived prior to the epidemic, 261 or as part of long-term strategies and programs.

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On the other hand, the prevention campaigns were aimed at vector control through fumigation, the 263 use of repellent and mosquito nets, and only a part was destined to recommendations to postpone 264 14 pregnancy and to use protection measures [32]. This reaffirms that these campaigns were carried 265 out, in essence, from the perspective of risk factors: risk practices or behaviors.

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However, one of the problems with such approaches is that the efforts "are hampered, as the 267 proposals can be translated into health programs that lack coherence in the particular contexts of 268 the communities or a practical vision that allows for a viable application within the community"

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During pregnancy 271 The number of women whose pregnancies were unplanned coincided with the number of women 272 who were not planning (17 women Regarding the symptoms of ZIKV, 2 women reported no symptoms, 12 had symptoms in the first  As the objective of the research is to explore the experiences of pregnant women, diagnosed with 420 ZIKV infection, with regard to the provision of health services, one of the central elements for this 421 approach is their biographical experience, which covered not only the aspects related to the 422 provision of the service as such, but also the transformation of the experience of their pregnancy 423 when affected by ZIKV infection, the assimilation of the news received during pregnancy, the 424 impact on their lives and that of their families as a result of the different outcomes and, finally, the 425 social and cultural aspects that determine the women's level of autonomy in the exercise of their 426 sexual and reproductive rights, beyond the context of the epidemic.

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When analyzing the information collected, it can be concluded that many factors determined the 428 experiences of pregnant women in the ZIKV epidemic, which in one way or another changed their 429 lives forever. These factors began from the moments before conception and continued to interfere 430 throughout the pregnancy, making this experience something they would not want to repeat again.

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Since this investigation revealed that there was a violation of the sexual and reproductive rights of In addition, there was evidence of loneliness and abandonment on part of the health sector, 437 obstetric violence, non-inclusion by men for the joint care of their partners throughout the 438 pregnancy process, poor psychosocial care, fear of stigma for having a child with some type of 439 congenital malformation, punishment for deciding to terminate their pregnancy and moral 440 judgment, by family members and health personnel, for carrying out the elective abortion.

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Additionally, according to the women's view, the minimum standards of care were not guaranteed 442 under the current health system. Although care protocols were complied with, these were not in 443 the times required by the women, in the context of their illness, since examinations and images 444 were not appropriate in the context of the epidemic, creating harm for them and their unborn 445 children.

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The foregoing also shows that, despite the existence of a sexual and reproductive health policy, it 447 has not yet succeeded in Colombia in incorporating the needs of women.

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In general terms, and in accordance with the objectives of the study, the contributions or 449 fundamental findings obtained in the study are related to the need to strengthen the gender 450 perspective of the ZIKV epidemic, approaching this epidemic from a health system that is not 451 fragmented, comprehensive and appropriate, and that sexual and reproductive rights must be 452 mainstreamed into all promotion and prevention programs. Acknowledgments and funding 456 We want to thank the women and their families of Cali and Villavicencio, who opened their hearts 457 to us to share their experiences. We also want to thank the work teams of Public Health,

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Epidemiological Surveillance of the Health Secretariats of Villavicencio, especially Alexandra

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Pardo and, in Cali, to Javier Colorado. In addition, we appreciate the support of the