Qualitative data regarding the experiences of pregnant women with lupus in Brazil

A qualitative design was performed as individual face-to-face interviews with each participant, following a semi-structured script based on open questions. Participants were interviewed at a specialized clinic, where, during prenatal care, women with stable systemic lupus erythematosus disease were received scheduled consultations. The sample was intentionally composed of women who attended a specialized high-risk clinic, from July 2017 to July 2018. Participants (N = 26) were interviewed in-depth, without refusal. A thematic analysis, according to the 7 steps of the qualitative analysis, was performed. Before conducting interviews, the researcher went through a period of environmental adaptation to the clinic, following a service observation script and maturing the open consultation script questions, to deepen the themes derived from these women's perceptions during the individual interview. Two authors analyzed the material, which was recorded as audio and transcribed in full; later, the material that was organized in the NVIVO 11 software was validated.


Specifications
Obstetrics, Gynecology and Women's Health Specific subject area Women's health in high-risk, outpatient prenatal care Type of data  Tables and Figures  Interview script  Observation script  Maps  How data were acquired The interviews were performed face-to-face, among 26 pregnant women with lupus. Interviews were recorded by Super Voice recorder and transcribed into text manually.
(App Super Voice recorder available at https://play.google.com/store/apps/ details?id=com.meihillman.audiorecorder&hl=en _ US&pli=1 ) Data format Raw data. The complete raw data are only for peer-review and in Portuguese. However, a summary of the participants' statements divided into the questions used in the interview script is made publicly available ( Table 3 ) The analyzed data gave rise to categories of results and are presented in an article published in the Journal of Midwifery (Elsevier) DOI: https://doi.org/10.1016/j.midw.2020.102715 . Parameters for data collection The interviews occurred on the same day that the patients received prenatal consultations and were conducted in a private room, which was prepared to receive each participant after acceptance. This room contained two chairs facing each other (interviewee and interviewer), without tables, clipboards, or any material that kept the two people away or indicated power. Description of data collection The first author (L. R.) collected data by performing 1 interview with each participant, using a flexible guide and 6 open-ended questions. Before each interview, a relationship was established, creating an atmosphere of empathy, trust, and responsiveness. Participants received an explanation of the research topic, a description of the study objectives, and the rights of the parties involved, with sociodemographic data being collected from then on. Written permission was requested to use a recorder. Behavioral and intervening aspects were recorded in a field diary. Data

Value of the Data
• The perspectives held by women with lupus, regarding pregnancy, is little explored [1][2][3] .
• Health professionals can benefit from this data, by developing roadmaps for issues that can enhance the perspective of the women they care. • Health professionals can use an observational script model in research or assistance fields.
• The replication of this method, using other populations, with different or similar characteristics in other settings, can facilitate the understanding of their experiences. • Knowing these data can lead the health professional to reflect on the non-adherence to medication or contraceptive treatments, by women with lupus. • The data provided knowledge regarding the characteristics associated with the participants at the research location, and health professionals can identify similarities among women treated by other services, to perform a naturalistic generalization of the research results.   She needed to be hospitalized, and the doctor said, "So, do you accept?" I said, "There is no way not to accept it, doctor." Imagine me not accepting and having a thrombosis inside my house without being treated, and I lose my son. How will my conscience look afterwards? Just because I was proud to not want to be hospitalized? I2 11 minutes 51 seconds And after a while, I found out that I was pregnant. At first, I was scared because my fiancé, who really wanted to be a father…because I will be very sincere, I was not preventing myself [from pregnancy] because the doctor said it would not be good for me to take contraceptives…he told me it was better to avoid…and this contraceptive could make the disease worse. I13 37 minutes 15 seconds

Data Description
In the beginning, it was an impact because the hematologist always told me not to get pregnant because lupus affects, attacks the fetus, and aborts. And I cannot take any type of contraceptive or hormone because I am predisposed to having APS. Because I have that positive antibody…Then, he said that if I happened to ovulate, get pregnant, and everything, I wouldn't even find out about the pregnancy because I was going to abort before…And then I got pregnant. The doctor who attended me when I checked in to do the curettage [for the previous abortion] said that I was crazy about getting pregnant because I have lupus. I couldn't put my life at risk…He spoke to the other doctors, "Ah, this one, she lost [referring to the abortion], but she wants to get pregnant." You know? That I was aware of the problem I had, but I still wanted to try. He wanted to rule my life. I was there suffering; because it is a loss, a pregnancy that you want, and the person treats you that way. I even complained about him here.
3) Tell me about your follow-up during pregnancy:

minutes 34 seconds
Because I thought I was going to get there [at the clinic for consultation] and I wasn't going to listen to the heart, I was already prepared to hear that it hadn't worked out.

minutes 27 seconds
My concern is this: being born perfect. The drugs I take harm him. Because I think this is the concern of people who are mothers: doing harm to the baby, reaching something. So, sometimes, listening to what women say [about the healthy children of lupus mothers] more relieved and the doctor said that lupus sleeps, but there are times when he wakes up, understand? So, each case is different. I6 38 minutes 27 seconds For me, I have only the pregnancy, and that's it. Because if we don't go crazy, because if you go online and search, "can women with lupus get pregnant?" you see everything. So I prefer not to see it. If it's a phase, let's go, it will pass, and that's it…the only major concern is with the baby…if it will be perfect, if…that's why all the ultrasounds that I do, I ask the doctors, "Is everything ok?" You can talk, right, because…pregnancy…there are people who are healthy, the child comes with a problem.   When I was about 19 years old, the doctor said that to have a child, I would have to have a treatment, so much that I never took contraceptives. I never took them. So, when I found out I was pregnant, I said, "my God is a miracle," because I never took it, never used a condom, and never got pregnant. So, for me, it was a miracle, a very good feeling…at first I didn't believe it. I only believed it when I saw the ultrasound, that I saw that little thing there.

minutes 39 seconds
People asked how I was, and I said, "I'm fine, I have nothing." But it is difficult because lupus is not very popularly known. People did not know what lupus was. There, they were afraid. I already lost a lot of friendship because they thought it was contagious. Because it was a total change, mainly of the body. I25 14 minutes 39 seconds I once stopped the medications. When I lost my mom. I was disgusted. But then, I realized later that it's no use. My luck was that lupus did not activate. But then I came back. So, I just abandoned the medication, but the doctor did not. I2 11 minutes 51 seconds Work takes away my peace. With the pregnancy, the relationship with the company worsened even more.

minutes 59 seconds
No, I don't work now. I quit because I started to feel really bad, and as I was working in a refrigerator. When I started the treatment of lupus, I worked in a very closed place and got very sick; got everything. It was flu, pain, you know? Fever, almost every day, and then I walked away. Then, the doctor discharged me. I filed a lawsuit because there was no way I could go back there because the place was closed, and they didn't want to move me to a more open place, you know? But then I went to work in the refrigerator. It got worse.   This table shows a summary of the participants' responses divided by the questions in the script used, previously the construction of categories in the data analysis process.
A figure demonstrating the interview reports and the category construction process can be found as Fig. 1, in the article "Perceptions of women with systemic lupus erythematosus undergoing high-risk prenatal care: a qualitative study" [3] , available at https://www.sciencedirect. com/science/article/abs/pii/S026 6 613820300887?dgcid=rss _ sd _ all . Fig. 2 represents a photograph of the data processed using the NVIVO11 software, after being manually analyzed by two researchers, as units of meaning that will be used as nodes. The transcribed and recorded materials of the interviews were coded by the software, showing that the references to speech vignettes chosen for each category were included and coded by the software. NVIVO identified references from all interviews, for all generated nodes and subnodes, as shown in Fig. 2 .
This figure shows that the bigger the word appears in the figure, the greater its frequency of appearance in the participants' speeches.
Supplementary material. Appendix 1-The service coverage map A geographical and political perspective of the survey location, including a map of the country, a map of the state, and a map of the regional metropolis.
Appendix 2-Guide for the observation of setting during environmental adaptation The guide used to observe the activities during field research.

Appendix 3 -Semi-structured script, with six open questions
The guide used to conduct interviews.

Experimental Design, Materials and Methods
A detailed description of the experimental design, materials, and methods can be found in the article "Perceptions of women with systemic lupus erythematosus undergoing high-risk prenatal care: a qualitative study" [3] , available at https://www.sciencedirect.com/science/article/ abs/pii/S026 6 613820300887?dgcid=rss _ sd _ all .

Study design
The primary study was designed using the qualitative method, specifically for a clinical setting, where the practice of patient care is routine [ 4 , 5 ]. The foundation of the method includes three pillars that represent three attitudes of the researcher. The first represents the clinical attitude of valuing active listening and contact between health professionals and patients, who are women with lupus receiving prenatal care, in this study. The second is an existentialist attitude that represents the validation of the problems experienced by each participant. The third attitude is psychoanalytic, manifested as the acceptance and consideration of the unconscious existence, manifest as the psychic expressions between the lines of speech and expressed in the behavior of participants, which requires careful evaluation to be perceived by researchers [ 3 , 4 ].

Research setting
The research setting was a specialized outpatient clinic, where women with stable diseases attended scheduled appointments for prenatal care [3] . At this specific clinic, approximately 40 pregnant women, who were diagnosed with high blood pressure, sickle cell anemia, cancer, or autoimmune diseases, are treated weekly, and an average of 25 pregnant women with systemic lupus erythematosusare treated annually [3] .
This clinic is located in the City of Campinas, associated with the University of Campinas, where medical residents, nursing students, and students studying nutrition and physiotherapy participate in services provided by the Women's Hospital "Professor Doutor José Aristodemo Pinotti" -Center for Integral Attention to Women's Health (CAISM). The Women's Hospital is the second-largest unit at the University of Campinas, with 1200 employees, provides services in over 60 subspecialties, encompassing the complex array of teaching and research activities that exist in the field of health care for women and newborns, and offers diagnostic and therapeutic services, especially in the areas of Gynecology, Obstetrics, Neonatology, and Oncology. The Women's Hospital is maintained using budgetary resources from the University and the public health system in Brazil (SUS). ( https://www.unicamp.br/unicamp/saude ), and is a reference service center for a region that covers 42 cities ( http://www.saude.sp.gov.br/ses/institucional/ departamentos-regionais-de-saude/drs-vii-campinas ).
The metropolitan region of Campinas is the second-largest metropolitan region in the country, with more than 3.2 million inhabitants [Brazilian Institute of Geography and Statistics (IBGE)], and generated 8.75% of the state's Gross Domestic Product (GDP) in 2016.
The service coverage map can be viewed in Appendix 1.

Environmental adaptation
The researcher's environment is relevant within the context of qualitative research [ 6 , 7 ]. Thus, during the development of our primary study, the first author had been situated in the setting since February 2017, when the observations regarding the functions and relationships within the service were recorded, according to a script, which is available in full in Appendix 2. This script allowed the researcher to undertake and maintain the behavior necessary to develop a rapport with the participants. In addition, the script allowed ample visualization and understanding of the necessary organization and environmental factors during the development of interviews, including the best time to meet with each participant and the best method for maintaining a private environment, protected from interruptions.

Sampling
The sample of participants considered for the primary study was intentionally selected. Our participants had common questions, which covered the pregnancy experience and the diagnosis of lupus, which resulted in their referral and receipt of treatment from the clinic. In addition, we chose to interview the participants during the third trimester of pregnancy, increasing the likelihood that experiences would accumulate during the first two quarters, which appeared to enriched the speeches of the participants, although no studies describing or exploring the perceptions of pregnant SLE patients during earlier periods of pregnancy exist for comparison.
To better highlight the characteristics and particularities of these women, we built a table describing the relevant sociodemographic data, which can be found in " Table 1. Characteristics of the participants" in the article "Perceptions of women with systemic lupus erythematosus undergoing high-risk prenatal care: a qualitative study" [3] , available at https://www.sciencedirect. com/science/article/abs/pii/S026 6 613820300887?dgcid=rss _ sd _ all5 .

Approaching the participants
Data collection was performed through one interview with each participant, between July 2017 to July 2018. The first author established relationships with the interviewees prior to the interview, to create rapport [8] , and increase the atmosphere of empathy, trust, and openness for the interview, which can increase the comfort of the participants to respond more freely.
Subsequently, all interviews were conducted by the first author, using a semi-structured script consisting of six open questions, which can be found, in full, in Appendix 3.
The following considerations were applied to the question roadmap: -The script was created during the research project and received necessary modifications during the environmental adaptation period. -The objective was to guide the interviewer during the data collection process, but the researcher remained flexible, allowing the free flow of speech with the women being interviewed. -As a guide, the script was used, as necessary, by the interviewer, who sometimes realized that there was no need to obey the sequence of questions or to ask them all because the interviewee's speech often provided answers without having to pose the questions.
In addition to the interviewees' speeches, we recorded a field diary, containing behavioral and intervening aspects observed during data collection.
A private room was prepared for each interview, containing two chairs facing each other (for the interviewee and interviewer), without tables or utensils that could physically separate the two people or that could indicate any power in this relationship, to provide a relationship without hierarchies and allowing the woman to freely talk about her experience as she saw fit.
The women were invited to participate in the interview on the same day that they had an antenatal medical appointment, to avoid the necessity of additional visits to the clinic.

Data Analysis
The content analysis was performed in 7 different stages [9] , as follows: 1. The notes in the field diary were organized, and the recorded audio of the interviews was literally transcribed by the first author. These notes and transcriptions formed a text that we call the corpus. To present the results, in the text of the primary article, grammatical corrections were made to sections of the chosen discourses, to facilitate the reader's understanding. 2. During this stage, two authors (first author LR and her PhD supervisor FGS) listened to the interviews and read the corpus. 3. The authors registered their impressions on the emerging and significant themes in the right margins of the transcribed text during reading and rereading. 4. During this step, all perceived content (themes and emerging meanings) was organized into categories and subcategories, with the intention of identifying patterns representing significant units and relevant characteristics within the text, considering two important issues: the relevance of the content in each interview, and the frequency [10] with which a given topic appears across all interviews. 5. During the independent analyses performed by two authors, disagreements were identified and discussed with the other authors, until a consensus was reached. In addition to this discussion, this material was presented at meetings for a research group, called Reproductive Health and Healthy Habits (SARHAS), at the University of Campinas, in the same hospital where the care for women with prenatal lupus occurred. Posters and presentations at national and international congresses were also performed, with the intention to discuss and validate this material. 6. The finalization of the screen and the structure of the categories and subcategories, including the construction of a figure that illustrates the thought process of the authors and the discussions between them. This is titled " Figure 1. Comprehending interview reports and the category construction process" and can be found in the article "Perceptions of women with systemic lupus erythematosus undergoing high-risk prenatal care: a qualitative study" [3] , available at: https://www.sciencedirect.com/science/article/abs/pii/S026 6 613820300887?dgcid=rss _ sd _ all 7. All material was validated by peers and members of the SARHAS research group, and NVivo 11 software (QSR International, Melbourne, Australia) was used to organize all material from the beginning of data collection until the end of the study.
In addition, to write the primary article, the consolidated criteria for reporting qualitative research (COREQ) checklist [11] was used, to guarantee the necessary rigor for this type of study.

Data Validation
Data validation is necessary for qualitative studies to guarantee accuracy [12] . This rigor is understood and must be presented in two ways: -Internal validation ensures that researchers have the skills to perform the data collection, to establish the necessary relationships with research participants, to understand the eminent meanings in the speeches of the participants, and to analyze the observations made in the field. -External validation requires that the data, which was analyzed in pairs, be exposed to those with expertise in the theme, through presentations to research groups and scientific events.
For internal validation, we made some necessary reflections and we emphasize the following points: The first author, who conducted all of the interviews, is a nurse and has experience in hospital care practice and primary care, with a focus on family health, and has accumulated professional experience in relationships with patients and family members in critical situations, such as hospitalizations in a nursing unit or intensive care; situations of social vulnerability, such as hospitalizations in psychiatry and psychosocial care; and situations in which rapid decisionmaking is required, such as care at a normal birth center.
This experience has allowed her to develop skills in relationships with different hierarchies and to understand how power relationships can be neutralized during different meetings. She (LR) has professional experience as a teacher, accompanying students in theory and care practice, which has helped her to develop the necessary skills to exercise and teach confidentiality and ethics in relationships.
She (LR) has experience with face-to-face interviews, during graduation with nursing academics, facing death and during a master's degree program with parents who experienced the loss of their child in a neonatal intensive care unit, she which made them develop the skills to use semi-structured scripts, dealing with the necessary flexibility to use these instruments and the development of qualitative research on subjects with dense content that may affect the interviewee's feelings and emotions.
However, the interviewee's feelings were welcomed by the research advisor supervisor (F. G. S.) and members of the research group (V. L. P. A. and M. S. S.) during the development of all the work.
For external validation, we have presented our research to the SARHAS group and The 11th international autoimmunity congress, 23th Congress of Gynecology and Obstetrics of Sao Paulo, 2018.

Ethical Approval
The primary study complies with National Health Council Resolution No. 466 [13] on health research with human beings. It was authorized by the local ethics committee under CAAE no. 68143817.0.0 0 0 0.5404 [3] . Informed consent of all participants has been obtained in writing.

Funding Sources
The first author of this article receives a doctoral scholarship of Improvement of Higher Education Personnel -Brazil (CAPES) no. 88881.188510/2018-01 for the completion of the doctorate that comprises the primary study to which this article is linked.

Declaration of Competing Interest
All authors declare that there are no known financial interests or interests that may influence or work on this document.