Abstract
HIV-positive women are confronted during pregnancy with a range of medical information and prescriptions that substantially affect the experience of pregnancy and birth. Based on antenatal and post-partum interviews with 60 HIV-positive pregnant women from São Paulo and Porto Alegre, Brazil, this article presents evidence of some of the factors that affect mode of delivery and access to post-partum sterilisation, and the implications of these. Whether women gave birth vaginally or by caesarean section was medically prescribed, with women's own preferences taking second place. Some were advised that caesarean section was the only option with HIV in pregnancy; others were told it should be used only for medical indications, even if the woman wanted to be sterilised at the same time. The women in Porto Alegre were less likely to get a sterilisation than those in São Paulo, even with caesarean section, as sterilisation was not encouraged locally. Many of the women who accepted a caesarean had been convinced before they gave birth that it was the best choice for them, either because it reduced the risk of perinatal HIV transmission or because it facilitated tubal ligation, or both. However, after they gave birth, the women judged their experience of delivery and the post-partum period mainly in comparison to previous deliveries, and many of them viewed the birth experience with HIV as more difficult than previous deliveries and worse than they had expected.
Résumé
Les femmes enceintes séropositives reçoivent des informations médicales et des prescriptions qui influencent l'expérience de la grossesse et de l'accouchement. Se fondant sur des entretiens avant et après l'accouchement avec 60 femmes séropositives de São Paulo et Porto Alegre, Brésil, l'article montre comment certains facteurs déterminent le mode d'accouchement et l'accès à la stérilisation après l'accouchement, et décrit les conséquences de ces pratiques. Les médecins avaient décidé si les femmes accouchaient par voie vaginale ou césarienne, les préférences des femmes passant après. Certaines avaient été informées que la césarienne était la seule option pour les séropositives alors que d'autres pensaient qu'elle n'était utilisée que pour raisons médicales, même si la femme voulait être stérilisée en même temps. Les femmes de Porto Alegre avaient moins de probabilités d'obtenir une stérilisation que celles de São Paulo, même avec la césarienne, car la stérilisation n'était pas encouragée dans la région. Beaucoup des femmes qui avaient accepté la césarienne étaient convaincues avant la naissance que c'était la meilleure option, parce qu'elle réduisait le risque de transmission périnatale du VIH ou parce qu'elle facilitait la ligature des trompes. Néanmoins, les femmes jugeaient leur expérience de l'accouchement et de la période post-partum principalement en la comparant à d'autres naissances, et beaucoup pensaient que l'accouchement avec le VIH avait été plus difficile et pire que ce à quoi elles s'attendaient.
Resumen
Durante el embarazo, las mujeres viviendo con VIH están confrontadas con una gama de información e indicaciones médicas que afectan significativamente su experiencia de embarazo y parto. Basado en entrevistas realizadas durante el perı́odo prenatal y el puerperio con 60 mujeres viviendo con VIH en São Paulo y Porto Alegre, Brasil, este artı́culo presenta evidencia de algunos de los factores que afectan el acceso a la esterilización posparto y su provisión, y lo que implican. La decisión sobre el parto—vaginal o por cesárea—fue por orden médica, con la preferencia de la mujer en segundo lugar. A algunas mujeres les dijeron que la cesárea era la única opción con un embarazo con VIH, mientras que a otras les dijeron que se practicarı́a solamente si fuera indicado por razones médicas, aun cuando la mujer querı́a que se esterilizara al mismo tiempo. Era más difı́cil para las mujeres en Porto Alegre obtener la esterilización que para las mujeres en São Paulo, aun con cesárea, porque la esterilización no era promocionada localmente. A muchas de las mujeres que aceptaron la cesárea les habı́an convencido antes del parto que era su mejor opción, porque reducı́a el riesgo de la transmisión perinatal o porque facilitaba la ligadura de trompas. Sin embargo, las mujeres generalmente juzgaron su experiencia de parto y el puerperio en comparación con partos anteriores, y muchas vieron la experiencia de parto con VIH más difı́cil que los partos anteriores y peor de lo que esperaban.
Advances in recent years in antiretroviral treatment for HIV infection have afforded greater quality of life to those who are HIV-positive and a significant reduction in AIDS-related mortality. The benefits obtained by the use of drugs and other measures to control the virus have also exposed great differences in access to these resources in developed versus developing countries, with the African continent as an extreme example of how inequitably the beneficiaries of treatment are selected.
While unequal access to treatment is a major problem, it is also important to consider the consequences of HIV-related medical care for people's lives. Several authors have analysed the history of the development of medical care, the expropriation of the meaning of health, definitions of what is normal vs. pathological and how medical interventions stem from a certain world-view.Citation1Citation2 Because of the gravity of AIDS-related disease and the social representations associated with it, the AIDS epidemic serves as an exemplary case for thinking about the contradictions and conflicts that can arise between medical “prescriptions” and the wishes and cultural values of a particular social group.
Almost all antenatal care and deliveries in Brazil take place in hospital-based clinics, run by obstetrician–gynecologists. The rates of both caesarean section and post-partum sterilisation are high. Female sterilisation is Brazil's most popular method of contraception, used by 40% of married women aged 15–44, with a significant proportion of sterilisations performed with caesarean deliveries.Citation3 Differences in these rates can be observed across the country, however, with the highest rates found in the Northeast and Central West regions, and the lowest in the three states comprising the South region.Citation3Citation4Citation5
A number of measures are available to Brazilian women to reduce mother-to-child transmission of HIV (MTCT), as part of the legal requirement to provide access to anti-HIV treatment to everyone who is HIV-positive. These include the offer of HIV testing regularly to women during pregnancy, administration of specific antiretroviral drugs to pregnant HIV-positive women and to prevent infection of their babies, and testing for viral load and CD4 count. Elective caesarean section is also recommended in the international literatureCitation6Citation7 for reducing perinatal transmission rates. However, Brazilian guidelinesCitation8 recommend screening that includes CD4 and viral load counts before deciding upon mode of delivery. If viral load is less then 1000 copies/ml or undetectable, and the pregnancy is more than 34 weeks, the decision on mode of delivery must be based only on the presence of clinical indications for a caesarean (e.g. fetal position and size and lack of dilation).
In addition to the usual antenatal care routines and requirements, pregnant HIV-positive women are therefore confronted with a welter of HIV-related information, prescriptions and practices that they have to take on board when they attend for antenatal care and as they prepare for delivery. They have to arrange for and have some or all of the recommended tests done, learn how to use antiretroviral drugs properly (both their own and eventually the baby's), decide whether to accept the recommended mode of delivery and so on. Yet, while much is known about the clinical aspects of mother-to-child transmission of HIV, comparatively little is known about how antenatal care and delivery are experienced by HIV-positive women themselves. This article is about the effects of “prescriptions” by medical professionals on the pregnancy and delivery experiences of HIV-positive pregnant women, their influence on women's preferences regarding mode of delivery and desire for post-partum sterilisation, and whether or not women felt their expectations had been met.
Study methodology and participants
The data come from a study involving 60 HIV-positive pregnant women in two cities, 30 each from São Paulo and Porto Alegre. The women were recruited from two types of antenatal clinic: those within or affiliated with a hospital with a clear referral system for childbirth, and free-standing clinics with no referral for delivery to a specific hospital. The antenatal clinics associated with referral hospitals were either associated with a university hospital or large public hospital, while the free-standing clinics were run by the city municipality.
We chose Porto Alegre and São Paulo because they have high AIDS incidence rates (among the 30 cities with the highest AIDS incidence in Brazil) and for purposes of comparison because female sterilisation was more prevalent in São Paulo than in Porto Alegre in the general population. In 1999, AIDS incidence rates were 65.0/100,000 in Porto Alegre and 37.9/100,000 in São Paulo.Citation9 Potter et al found that among women who wanted no more children in São Paulo, 24% of private sector patients were sterilised post-partum compared to 6% of women in the public sector. In contrast, in Porto Alegre, only 16% of private sector patients who wanted no more children were sterilised post-partum and 2% of those in the public sector (unpublished data for 1998–99).
A qualitative methodology, based on ethnographic observation and semi-structured interviews, was used to explore the reproductive intentions, desires and frustrations and the level of satisfaction with services of the 60 women. Basic demographic and birth-related information was also obtained on number of living children, age (under or over 25), whether the woman was in a stable relationship and time since HIV-positive diagnosis (during this pregnancy/during a previous pregnancy/at another time). In order better to evaluate the women's expectations regarding care in pregnancy, mode of delivery and desire for post-partum sterilisation, each woman was interviewed twice, once during pregnancy, between the third and sixth month, and again about two months after the baby's due date. This allowed us to find out whether or not the woman's expectations during pregnancy had been met or not, in what ways and with what outcomes.
Table 1 Socio-demographic characteristics of 60 HIV-positive women (%)
Caught between personal desire and medical prescriptions
During the interviews while they were pregnant, the women made it clear that their expectations as to mode of delivery were affected primarily by the fact that they were HIV-positive and secondarily according to the type of antenatal service they attended. When asked about the mode of delivery they expected to have, more than half the women said it would be caesarean section. The main reasons why they expected it to be caesarean delivery were that it would lower the risk of perinatal HIV transmission to the baby, that it was the health team's recommendation in view of the presence of HIV infection and also because it meant they had a better chance of obtaining a tubal ligation. Other reasons, such as that normal childbirth was a distressing experience, fear of pain or some other health-related reason (previous caesarean deliveries, lack of cervical dilation and so on) were also mentioned, but these generally figured as secondary arguments. The following was a typical response:
Woman: “This one I'm going to do by caesarean, because that also avoids the risk of the child getting the virus, doesn't it?… It also avoids him… being born and getting infected. It was at the start of my pregnancy I asked Dr. P. Right at the very beginning I asked him: “And what do I do now? When a mother has one normally there's blood and all that, isn't there?”… So he told me that was no problem, that I could choose to have a caesarean, couldn't I?… So from the moment I got pregnant, I already knew it was going to be a caesarean.”
Interviewer: “Oh yes? And did you accept that? How did you have your other babies?”
Woman: “All normal; they were already on the way when I got to the hospital… Easy as pie!”
Interviewer: How do you feel about that, having to have a caesarean now after experiencing normal childbirth?”
Woman: “Eeeh, I hope it doesn't hurt, because normal delivery hurts like mad, my girl! (laughs) … I've never had a caesarean, I haven't had any experience of a caesarean yet, have I? But I reckon that if it's for the good of the baby, it's worth it. You have a little cut in your tummy, take an anaesthetic. Oh, I think it's worth it!… What's important is for the child to be born healthy. Look, I don't know if it's a good idea, because I've never had one, but I wanted to have a caesarean… Yes, I did, because there's less chance of transmitting the infection and also because for a long time I've been wanting the operation [sterilisation], haven't I; I don't want any more kids, see? So that way it'd be a chance to do the two things at the same time.”
Thus, prior favourable or unfavourable birthing experiences were not the determining factors for women, but rather the baby's health, the reduced risk of vertical transmission of HIV and the opportunity to be sterilised post-partum. The preference for a caesarean delivery was also clearly connected with medical discourse on this subject, or rather one discourse in particular, which considered caesarean section to be the only option because of the consequences of not having a caesarean, no matter what the woman's preferences were:
“All [deliveries] have to be by caesarean, so as not to infect the baby, don't they?”
“When they said it might be a caesarean I was scared, wasn't I? Because I've never had a caesarean, have I? So, I was actually afraid. Oh, God forbid that I catch a hospital infection, I know that I can't catch one, can I? An infection, anything like that, you know? But then they explained that you've just got to be careful, do your hygiene properly, then there won't… then there's no problem at all.”
“The nurse told me that I'm probably going to have a caesarean. Because of the new discoveries, you know… That it's less likely, right?… And that probably it's going to be a caesarean, isn't it, from what she told me?… I'd prefer it normal, I would!… As far as I'm concerned normal birth was really good for me, really quick; it was great. My recovery was great. The day I got home I was all set to do the washing up.”
The fact that caesarean delivery was medically recommended led many women to relegate their own preferences to secondary importance, even some of the women who expressed a desire to have a normal delivery. At the same time, however, not all of the clinics providing care for HIV-positive pregnant women have the same position as regards mode of delivery, and this was clearly perceived by the women, who had to cope with sometimes conflicting information from different sources.
Woman: “I told… her [the doctor] today that I thought I should have a caesarean because of the… the problem, you know, of HIV. But no, not necessarily, it's going to depend on the position the baby is in, that kind of thing, but I was rather wanting it to be a caesarean.”
Interviewer: “And would you really prefer a caesarean?”
Woman: “Yes, I would, I would. Among other things, because of some of the things the doctors say… They prefer to do a caesarean because it gets the baby out quicker, doesn't it? It avoids a lot of contamination, but people told me today that it's going to depend a lot, you know, on… I don't think it was even her [the doctor], it was someone else working here; I've talked to so many people, you know—that sometimes they even do a caesarean to prevent HIV infection. I think it varies… with each doctor, doesn't it? A caesarean is quicker than going through… labour: you spend hours and hours there, don't you? But from what she [the doctor] told me, no… it won't necessarily be a caesarean.”
Some of the women's understanding of their options was based not only on their doctor's recommendations but also on information from other sources, e.g. conversations in the clinic waiting room or with other health workers and also from personal experience, both their own and those of women they were close to. Thus, they came to see that there was a balance of risks–risks to themselves vs. risks to the baby. They recognised that normal childbirth involved less risk to themselves than a caesarean, because the latter was a surgical operation and therefore associated with the risks of infection, inflammation around the stitches and anaesthesia.
Expectations with regard to childbirth also depended on what alternatives were actually available in their particular maternity ward. Many of the women resigned themselves to their low status in the health system and to knowing that, ultimately, the decision how their baby was delivered was not up to them at all. In a large number of cases, it was not even up to the team that provided their antenatal care, but to whoever was on duty at the time they gave birth.
Institutional culture as a determinant of mode of delivery
Not only were the women's wishes conditioned by their doctor's recommendations, but also an association between the women's expectations and how clearly and emphatically the clinic presented the benefits of caesarean section. This influence could be seen in the kinds of arguments the women used to explain their preferences. Thus, the women attending one of the university-based clinics, for example, generally used a more technical discourse when they emphasised the reduced risk of vertical transmission with caesarean section. In some cases, however, the amount of information they actually had did not give them a clear understanding of why the one procedure was preferable to the other.Citation10
“Yes, she says it is, doesn't she. I don't know. Because there's more contact with the mother's blood, isn't there. But there's never been a dry delivery yet, has there? In a caesarean….they… I don't really know, do I… They dry the bag first, I don't know how, somehow, then they make the cut to bring out the baby. I don't know.”
“The doctor said that a… caesarean delivery is safest… I think a caesarean is safer because… there's more way to avoid the… contact with the… I think, of the blood with the baby's placenta.”
In Porto Alegre, women attending an antenatal clinic affiliated with a general hospital, where the doctors were not AIDS specialists, more frequently put forward arguments in support of normal childbirth than women attending other clinics. In São Paulo, on the other hand, preference for normal childbirth was expressed by more or less the same number of women and doctors in all types of clinic, and the risk of caesarean to the woman was given more prominence than the risk to the baby.
Thus, women's expectations in relation to the mode of delivery were not determined solely by the condition of being HIV-positive, but also by institutional discourse and practice—and by the assessment that the women themselves made of the context in which they found themselves, i.e. in terms of greater or lesser likelihood of having their expectations met.
Institutional culture and access to post-partum sterilisation
Medical discourse and culture are also sometimes quite local in Brazil, illustrated by the differential access of the women in this study to post-partum sterilisation in Porto Alegre as compared to São Paulo. The majority of the 60 women in both cities did not want to have more children—29/30 in Porto Alegre and 28/30 in São Paulo. For those who wanted no more children, the desire to be sterilised after delivery, as expressed in the interviews during pregnancy, was extremely strong—21/29 in Porto Alegre and 22/28 in São Paulo. Clearly, then, most of the women in this sample wanted very much to be sterilised post-partum and the desire to do so was almost identical in the two cities. Looking at the outcomes, however, a dramatically different picture emerges between these two cities. In contrast to their desires, only 2 of 29 women in Porto Alegre were sterilised vs. 15 of 28 women in São Paulo.
StudiesCitation11Citation12Citation13 have shown how important medical training and local culture are in influencing health workers' attitudes to female sterilisation. This is evidenced in the differential rates of sterilisation among women in the various regions of Brazil, always with the lowest rates in Porto Alegre. In the case of HIV-positive pregnant women, it was local medical culture that explains the differing expectations of the women in the two cities as regards the hope of having a tubal ligation. While women in both cities were greatly in favour of post-partum sterilisation for themselves, their expectations of how likely they were to get it differed widely. In São Paulo, the women perceived that clinics tended to facilitate and at times even encourage tubal ligation, which made them more confident they could have “the operation”.
In São Paulo, in fact, sterilisation was often encouraged by clinic staff, especially in services with a referral hospital for delivery. Clinic staff in one of the São Paulo clinics in this study offered seropositive women the possibility of post-partum sterilisation during the first antenatal consultation, even before they had met with a doctor. On subsequent visits to the clinic, women were often reminded of the sterilisation option.
“The doctor explained to me that they are wanting to do a caesarean, so as to be able to tie the tubes, right. But if that's not possible, they'll do a normal delivery and then tie the tubes later… So that put me on the alert. I would rather have a caesarean, because then it'd get done all together… at the same time, the tubes and all. Now with normal delivery, that wouldn't happen. I'd have to have a normal delivery and then go back in to do the tubes.”
“No, it's going to have to be a caesarean because I'm going to have my tubes tied, see. Even so, I asked if I could have them tied if it was a normal birth. So they said I could have the operation three months later to have them tied. I don't know, they say it's going to be a caesarean, but if I could choose, I'd want it to be normal.”
In contrast, the women from Porto Alegre said it was difficult to obtain a post-partum sterilisation, because perhaps the woman was too young, few hospitals or health professionals performed the procedure or it had to be done during caesarean delivery. In the women's perception, health services in Porto Alegre did not much favour sterilisation and health workers endeavoured to postpone any decision in individual cases by deferring responsibility for the decision to another health worker, generally the duty doctor, which meant it would be a last-minute decision and therefore less likely to happen. Thus, the women from Porto Alegre had fewer hopes of getting a tubal ligation.
“Right, but everyone says that to have your tubes tied you've got to have… oh, how do you say it, you've got to have that problem that you can only have a caesarean, and then they'll tie your tubes off. If my delivery's normal, I don't think they'll do it. And then I don't… if it's a normal delivery, then there's no way. But I could ask, couldn't I? Being as how I've got this problem [HIV], I could now, while they're at it, just ask, couldn't I?”
The women in both cities knew that it would be easier to get a sterilisation with caesarean section than otherwise, as is generally the case all over Brazil.Citation11Citation12Citation13 However, while the women from São Paulo knew that they could also have the procedure at some other time—because the clinics told them so—that possibility was not mentioned by the women from Porto Alegre. For them, it would be difficult enough to get a tubal ligation post-partum, and even if they had a caesarean delivery they would have to put forward the argument that they were HIV-positive too. The chances of them getting one at any other time were even more remote.
Frustrated wishes and expectations
Based on the women's prior expectations and the type of delivery they actually had, approximately half the women interviewed were able to give birth the way they had hoped and the other half were not. In Porto Alegre of the 16 women who wanted a vaginal delivery, ten were able to have it and of the 11 who wanted a caesarean, only two had it. In contrast, in São Paulo, of the 13 women who wanted a vaginal delivery only five were able to have it and of the 14 who wanted a caesarean ten were able to have it.
Interestingly, however, many of the women described their experience negatively, even those who managed to have the mode of delivery they had hoped for.
“I would have liked it to be a normal birth, like when I had my little boy, I would have liked that a lot, for it to be a normal delivery. But all right, she arrived OK, she was delivered OK. I wanted a normal birth… Yes, the doctor said that it would probably be a normal delivery. Just that it all depended on the result of that viral load test that I had. So, as that high viral load came up it was decided that it would be caesarean… I would prefer a normal delivery a hundred times. Because after a normal delivery I came home and could get around right away, it was a lot better! Not the caesarean. After the caesarean it hurt a lot inside, it hurt for quite a long time. My tummy hurt quite a lot inside because it had been opened up, hadn't it! So it was harder to walk and all, wasn't it. And when I had the stitches out, even then it opened up a little bit; it wasn't better, see.”
“My other deliveries were normal, were normal births. This one took longer, because first of all, with the stitches, when I got back from the hospital with the stitches, I right away started hitting her [my oldest girl] because she got me upset… I started to get upset right away. I could see that it was going to be—how do you say it?—a difficult convalescence, right? It was going to be troubled, I was going to get irritated, and the doctor had said that I wasn't to get upset, right, that I shouldn't get upset, but that I would have to get on with it, upset or not.”
Thus, although many of the women who accepted a caesarean had been “convinced” that it was the best choice, whether because it reduced the risk of transmitting HIV to the baby or because it facilitated a tubal ligation, in the end their actual experience of the birth and post-partum period was judged on a different basis, and especially in relation to their experience of previous deliveries.
In spite of the strength of the medical arguments beforehand (and thus, at a certain remove), something different happened when they actually came to give birth and evaluate the experience. The parameters of medical discourse, which up to that point had served to frame their expectations regarding childbirth with rational arguments, seemed no longer to be taken into account. Instead, the women emphasised the physical experience–a more difficult recovery, pain–as well as the emotional aspects of the experience,Citation14 e.g. nerves, troubled convalescence, as well as situations which involved poor care and discrimination on the part of health care providers. In that sense, their antenatal perceptions and experiences, and the fact that some of their expectations regarding childbirth were influenced by medical advice, became part of the explanation of the unpleasantness they had experienced. Thus, for many of the women, this birth was seen as more difficult that their previous deliveries, or worse than they had expected
Cása de Passagem, Recife, Brazil
Discussion
When the analytical focus shifts from individual behaviour to the broader social contextCitation15Citation16 a number of issues arise. In the cases considered here, it is apparent that the women's reproductive decisions did not occur solely in the private sphere, but were conditioned by a set of institutional and cultural factors that went beyond individual wishes and experiences. On the other hand, it is very hard to distinguish the boundaries between these factors, since as the medical institution set concrete limits, the local culture justified them and gave them meaning.
Individual wishes and practices were situated within this tangle and constructed within these boundaries, they did not exist independently. However, the meanings that individuals bring to bear on their experience may be determined socially or institutionally in one situation and not another, as happened in this case between the antenatal and post-partum periods. In the case of the HIV-positive women in this study, the influence of medical values was obvious in their expectations of how they would deliver their babies and whether or not they would have a tubal ligation. Yet afterwards, in their assessment of the actual delivery experience, it was their prior birthing experiences, and their physical and emotional condition, that gave the experience its meaning.
This multiplicity of determinants and different levels of influence, wishes and expectations,Citation17 which affect individual behaviour, require that researchers and health care providers too take a multi-dimensional approach. Action on only one or two levels, although it may produce concrete results such as, in this case, reduced rates of vertical transmission of HIV, is insufficient to give meaning to the individual woman's perceptions and experiences as a whole, as manifest in their “before” and “after” descriptions of what was important in their birthing experiences.
This raises questions about how far this lack of correspondence between expectation and experience may influence future behaviour. Will those women who had to forego their preference for a normal birth and who experienced caesarean delivery unfavourably be as willing to accept their doctors' recommendations the next time? And those women who as a result of the institution's values and the local culture were unable to have the tubal ligation they wanted, even after submitting to the caesarean section which they believed would be a facilitating condition, how will they behave? Will they seek a further pregnancy to make yet another attempt to have the sterilisation or will they resign themselves to another method of birth control, even though it may be perceived as problematic?
This study suggests that health interventions are really effective only when they make sense to the person needing health care, on all levels. Decisions about mode of delivery and sterilisation should not be based only on medical information and prescriptions, but need also to consider the woman's personal wishes and experience. Programmes and public policies on prevention of mother-to-child transmission of HIV must also take into consideration the woman's wishes, whether the desire for more children or the desire to be sterilised. In this sense, the quality of sexual and reproductive health care is directly related to showing respect for HIV-positive women's wishes as well as their rights.
Acknowledgements
This is a revised version of an article published as: Knauth DR, Barbosa RM, Hopkins K, Pegorario M, Fachini R. Cultura médica e decisões reprodutivas entre mulheres infectadas pelo vı́rus da AIDS. Interface-Comunicação, Saúde, Educação, Botucatu 2002;6(11):39–54. Our thanks to research assistants Marion Pegorario, Regina Fachini and Maya Hightower. The study was supported by grants from the US National Institutes of Health (R01 HD 33761-13) and the Brazilian Council for Research Development (CNPq). Translation from Portuguese to English was by Peter Lenny MIL.
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