Fortaleza
Median age
33 (23–43)
Living below the poverty line in their respective countries
18/18
Finished high school
3/18
Every formally employed
7/18
Children (mean and range)
3 (1–7)
Routine prenatal care
12/18
Number of mothers with HIV-positive children
1/18
3.2 Experiences with HIV Treatment and Care: Prenatal Care, Testing, and Disclosure of HIV Status
I began by asking the mothers I interviewed to comment on the amount of prenatal care they received during their pregnancies. As I have noted in the introduction, prenatal care was made freely available to pregnant HIV-positive women in Brazil in 1996. Despite reporting occasional difficulties in arranging childcare or transportation, nearly two thirds of the women received routine prenatal care, and the remaining five reported at least intermittent medical visits and care (cf. Chap. 4 in this volume).
I found that the women were also likely to receive an HIV diagnosis in the context of a prenatal care appointment (see also Chaps. 3, 4, 15, and 16 in this volume). A total of 13 out of 18 women received a diagnosis of HIV during the prenatal exam. The remaining women either arrived at a health clinic with illness complaints, or had watched boyfriends or partners struggle with the disease, and were subsequently tested for HIV. The number of times doctors reached out to the women in this study to inquire about taking an HIV test was particularly striking. For example, two of the women reported that doctors had sought them out and asked them if they would be willing to be tested for HIV after their boyfriends or partners had tested positive for the disease. In another case, a respondent reported that she had presented at a local health clinic with a severe case of boils. The attending doctor asked about her background and, in the course of their conversation, suggested that she take an HIV test, in addition to being seen by a dermatologist.
Although I did not ask women to comment specifically on the quality of their visits with doctors regarding the HIV test, nearly all of the women in my study voluntarily described details about these interactions that showed their doctors in a positive light. For example, Isabel reported that
I had a fever, and I got the chicken pox. I went to the doctor, and when I showed him my arm, he said, “Oh my child, we’re going to examine you for HIV. You might have this virus, should we make a test?” And I said okay because it is better to know.
Another woman, Solange, reported that her doctor “looked at her with concern” when she said her boyfriend had HIV and asked her “well what do you think? Should we make a test too?” The majority of the women used words such as bonita (lovely) or simpatico (nice) to describe the doctor or medical caregiver who performed the HIV test.
Stories of positive interactions with doctors surfaced again when I asked women to describe their feelings and experiences revealing their HIV status. Most of the women in this sample revealed a willingness to tell doctors and other medical professionals about their HIV status and reported doing so with a measure of tranquility. In total, 13 out of 18 women reported that fear of revealing their HIV status did not act as a barrier to care, while 5 women stated that fear of stigma sometimes prevented them from revealing their HIV status.
Joelma’s comment was typical of the many responses I received:
I reveal my HIV status in health clinics when necessary. I don’t have fear of revealing my positive status on necessary occasions since after my diagnosis, many things went right for me, and with the knowledge of Jesus and God, I’ve been given more of a chance of victory.
Other women simply stated that they “always reveal their status when necessary.” When asked to describe why they did not have a problem disclosing their HIV status, most often, the women referred to the positive attitudes of the health care workers they interacted with. For example, Linda stated:
I don’t fear revealing my status in health clinics because I think they [the staff] are given an orientation about how to behave. When they found out about my status, they gave me support and didn’t treat me any differently.
Another woman, Manuela, acknowledged that the behavior of her doctors actually motivated her to disclose her status. She said:
There’s just no way to hide. The doctor needs to know, and what motivates me to speak is that I need treatment… I’ve never feared telling people I’m HIV-positive. When I go get the medicine and they see the prescriptions, they don’t ask any kind of questions. Maybe they’re curious to know, but they don’t ask.
A notable minority of Fortaleza women did report a fear of disclosure (6 out of 16). However, for these women, this fear surfaced most often in the context of a local health center where they were worried that they would be recognized by friends or family members. One woman, Angela, said, for example,
I would reveal my status if necessary in a big hospital, but never in the health center in my neighborhood, because I have a fear of prejudice from my neighbors.
Another woman stated that
For me, the big issue is telling someone I have feelings for that I’m HIV-positive. But telling the doctor is no big deal.
Only one of the women in the Fortaleza group, Francinete, reported to be fearful in all contexts, stating, “If I reveal my status, I’ll be prejudiced against. I’m afraid of speaking about it even in hospitals.”
Several of the women I interviewed linked the quality of care they received and the lack of stigmatization they experienced with the fact that they were being treated in a hospital where doctors and caregivers were used to dealing with people with HIV. For example, Vanessa said:
They know exactly how to treat you here; they know what you’re going through and don’t make you feel like you’re alone.
However, other women consistently used the phrase meu amigo (my friend) to describe their doctor and to explain why they did not experience stigma in revealing their HIV status. Andressa, for example, suggested that
Even now the doctor is the person that I trust, I get along very well with him; he’s my doctor, my friend.
Another woman, Analouisa, commented that
The doctors are very attentive, and they have the desire to talk to you like you are a professional. I feel very comfortable during the appointment. I talk to my doctors about everything.
The most negative experiences women reported did not concern stigma but were rather about having to wait for medical appointments. Maria Jose, for example, stated that her doctor was often late for her appointments, whereas if she herself were to show up late, they would tell her to come back another day. However, she ended the story by commenting that in general, the doctors were excellent and that now she “really likes the doctor.”
3.3 Coping with an HIV Diagnosis: Depression Following HIV Diagnosis and Motivation to Accept Treatment
Once I had elicited responses regarding women’s experiences with early HIV medical care and treatment, I wanted to know more about how they coped with an HIV diagnosis once they had received it and what role doctors, medical institutions, and family networks played in their ability to accept and continue with treatment routines. I found that women consistently mentioned more traditional forms of support from their family, friends, religious faith, and in conjunction with medical care professionals and institutions as crucial to their attempts to overcome depression following HIV diagnosis and in their motivation to accept HIV treatment (see also Chaps. 12, 14, and 15 in this volume).
More than one half of the women I interviewed were living with a partner (9 out of 16 women reported living with a spouse or partner), and 8 out of 16 were married. Although these women reported living in “small” or “cramped” houses, often with large numbers of family members (as many as 9), they reported no incidents of physical, sexual, or mental abuse, nor did they tend to comment negatively on their living situations in general. When asked, “who helps in taking you to meetings with doctors or other hospital visits?,” in almost every case, the women provided detailed lists of specific family members who would accompany them to the hospital, who could stay home with their children, and who could come to stay with them on overnight visits. There was not a strict uniformity in terms of which family members played which roles; rather, mothers, grandmothers, sisters, partners, in-laws, and children were all listed as possible, and often interchangeable, helpers.
In addition, despite the fact that most of these women had left school early (more than half of the women in the study had a 6th grade education or below) and fewer than half of them were employed at the time of the interview, they did report being embedded in multiple social settings that facilitated positive social bonds. For example, almost all of the respondents went to church at least once a week, and a third of them went three or more times per week.
A significant number of the women also described a particular medical institution (most often the infectious disease hospital) as helping to facilitate their HIV treatment. For example, Vanessa described always bringing her children with her to her medical consults. She stated: “The doctors never said this was a problem; they’re always welcoming.” “I even bring my 3-year-old,” she continued, “he stays at the casa de apoio [nongovernmental ‘houses of support’ which provide food and lodging to those in need], when I don’t have someone to stay with him.” Another woman, Manuela, pointed out that in the absence of strong family relations, she counted on her medical clinic to provide the necessary support. She remarked that
One time, I stayed in the hospital, and they talked to me and paid for my children to stay. It is a marvelous institution. I can’t count on anyone from my family to do this, so I depend on these institutions.
Thus, in the context of our interviews, relationships with family members, friends (who in certain cases were incorporated into family structures), church groups, and medical institutions were all reported to provide a strong basis of social support and solidarity.
The existence of strong social and institutional embeddedness appeared to play a significant role in women’s responses to being diagnosed with HIV and in their motivations to accept HIV treatment. For example, although the majority of Fortaleza mothers reported having significant episodes of depression after learning that they were HIV-positive, these women also reported mobilizing social and institutional connections to help cope with their reactions. Irene offered a typical response to her feelings after being told she was HIV-positive:
I wanted to cry all the time; I didn’t have the motivation to do anything; I didn’t feel like eating. Finally, someone from my family came to see me and made sure I was able to get out of bed and start living again.Stay updated, free articles. Join our Telegram channel
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