Women living with HIV/AIDS who are sexual partners of injecting drug users
Ana Flávia d'OliveiraI; Márcia Thereza CoutoII; Maria Aparecida CardosoIII
IDepartamento de Medicina Preventiva. Faculdade de Medicina Universidade de São Paulo. São Paulo, SP, Brasil
IIDepartamento de Ciências da Saúde. Universidade Federal de São Paulo. São Paulo, SP, Brasil
IIISecretaria Municipal de Saúde. Prefeitura Municipal de São Paulo. São Paulo, SP, Brasil
OBJECTIVE: To analyze perceptions of risk, prevention strategies, their own relationship with drug use and that of their partner's, and future expectations among women living with HIV/AIDS whose partners are drug users.
METHODS: This is a qualitative study of women living with HIV/AIDS who receive specialist treatment in Sao Paulo Municipality. Semi-structured interviews were carried out with 15 women, whose self-reported means of infection were heterosexual relations with a partner who is an injecting drug user. The script for the interviews covered the following areas: childhood, history of sexual relations, use of drugs, impact of seropositivity on daily life, understanding of the prevention of sexually transmitted infections, and perspectives of the future. The material from the interviews was analyzed using content analysis.
RESULTS: The study pointed to a difference in the ways that the women live with their own drug use and with that of their partners. Their partners' use of injecting drugs was not primarily associated with a risk of HIV infection, due to attempts to conceal the fact or because they believed that the monogamy-fidelity-confidence trinity would take precedence as a form of protection.
CONCLUSIONS: The women's different experiences of drug use should be taken into account and opportunities to discuss with them about the issue are important to ensure that more effective strategies for prevention and care are adopted.
Key words: Women. Acquired immunodeficiency syndrome, prevention & control. Acquired immunodeficiency syndrome, transmission. Substance abuse, Intravenous. Health knowledge, attitudes, practice. Health care (Public Health). Qualitative Research.
The emergence of the AIDS epidemic in Brazil was characterized by high incidence rates among men who have sex with men. In later years, the disease was marked by an increase in the number of cases of heterosexual exposure, thus increasing the number of women affected. In Brazil, the incidence ratio by sex dropped from 28:1 in 1985,2 to 1.8:1 in 2002.3 The use of injecting drugs is an important contributor in this increase in cases of AIDS among women, either on account of their own drug use or because of unprotected sexual relations with male drug users.1 In São Paulo municipality in 1991, female sexual partners of injecting drug users (IDU) represented 37.5% of cases registered in the category of heterosexual exposure. In 2003, 15% of women classified in this category attributed their seropositivity to their sexual partnership with an IDU.4
Although the sexual partnership with an IDU is not the principle form of transmission among women, heterosexual transmission continues to rise. Having an IDU partner represents a particular form of transmission about which little is known, and this brings with it certain challenges in terms of prevention and care.
The reality of IDU and the kinds of relationship in which they engage have been the focus of recent studies.5-7 At the same time, women's issues relating to HIV/AIDS have also been examined by a number of researchers.8,2,3,4,5,6 However, few studies have considered the lives of female IDU,7,6 or women partners of IDU. This gap in the literature was one of the reasons for this study, since this group of women finds themselves in a situation of increased vulnerability to HIV infection, due their partner's behavior, as well as their own, in relation to drug use.
The objective of the present study was to describe perceptions of risk of HIV, prevention strategies, the relationship with drug use and future expectations among women living with HIV/AIDS who are partners with IDU.
A qualitative study was carried out, based on 15 semi-structured interviews with seropositive women receiving health care in a specialized unit for sexually transmitted diseases in the east of São Paulo municipality.
In August 2002, the clinic registered 2,493 individuals with sexually transmitted infections/HIV/AIDS. Of the 1,056 women registered, 154 were classified in the category of transmission "heterosexual sexual partners of IDU". Of these, 81 were had been followed-up, with the remainder having either died, abandoned the treatment or were transferred to other services.
Invitation letters were given to these 81 women by the clinic's health professionals, between 29 October 2002 and 20 December 2002. In response to the letter, 36 women filled out a form used to select interviewees. A total of 15 women were selected, based on differences in schooling, age and personal drug use.
The interviews covered the following subjects: childhood; first sexual experiences; relationship history, particularly with IDU; history of drug use and/or experience of partner's drug use; current life (children, partner, family, living conditions, income, work); impact of seropositivity on their daily lives; understanding of contraception and prevention of HIV and sexually transmitted infections before and after the HIV diagnosis; perspectives on the future and advice for other women, based on their experience. The interview script was pre-tested on two women and proved appropriate for achieving the study objectives. These two interviews were included in the analysis. Data on the profile of these women is given in the Table.
The interviews were carried out in an interview room with complete privacy. On average they lasted one hour 15 minutes and were recorded and transcribed. The women were asked to choose a fictitious name in order to guarantee anonymity and confidentiality.
The women were supplied with an informational guide about the rights of HIV carriers and governmental and non-governmental organizations that provided services and/or support to people living with HIV/AIDS in São Paulo.
Content analysis was used to analyze the results: after an exhaustive reading of the transcripts, they were analyzed individually then cross-analyzed, according to the principle themes proposed in the study objectives.
The analysis was organized on the basis of specific themes relating to women in general and to HIV infection;1,8,9,3,4,5 and on their own use of drugs and/or their partnership with an IDU and HIV infection.7,6 Features specific to this group of HIV positive women partners of IDU were noted, with a focus on the ways that they consider their IDU partner to be a source of risk of HIV infection, and how they adopt particular prevention strategies, both before and after the HIV diagnosis. From the same perspective, their own drug use was also raised.
The study was approved by the Ethics Research Committee of São Paulo Municipal Health Secretariat, (CEPSM). The women were registered and interviewed only once they had read, understood and signed the free informed consent form.
ANALYSIS OF THE RESULTS
Risk and prevention before the HIV diagnosis
Thirteen interviewees did not use condoms before the HIV diagnosis. One of the two women who said they did use condoms, Malu, was a professional sex worker and insisted on the use of a condom for all sexual relations, even when the cost was deducted from the payment since, as she explained, there were 24-hour drug-stores near to her work place. However, condom use was not common with her regular partners and the principle means of contraception were the oral pill or coitus interuptus.
In general, the interviewees who maintained relationships that were intimate and trusting reported that they stopped using condoms. This method contradicts the idea of "natural" or "normal" sex8,9,2,5 and gives rise to problems in three respects: the first relates to new relationships, where the possibility of infection was listed by some women as a concern at the beginning, but once the partner had become stable, this possibility disappeared on account of greater levels of intimacy, getting to know the partner's family and habits, and generally because of greater mutual trust.
Secondly, in well-established and monogamous relationships, the use of a condom calls into question the partner's fidelity. In both these circumstances, condom "negotiation" is not an issue. The issues most commonly mentioned, particularly in relation to sexual relations, are the desire for pleasure and, in some instances, concern about the risk of pregnancy. In relation to pleasure, some women reported that the use of a condom was displeasing or uncomfortable.
"I was taking the pill. Then, for about six months, we used condoms. And then, one day we were messing around, I don't know, we ended up having sex without a condom. From that day on, we didn't use them any more. And that's when it happened to me". (Ariane)
"Ah, I said it would never happen to me. I didn't go out with anyone other than him. How was I going to catch AIDS?..." (Lidiane)
"(...) because really good sex is having normal sex, (...) and quite often you have to use a condom because of the diseases that are out there, and that can be a pain for the relationship, ( ) it's the same as using a plastic vibrator, you don't feel the flesh, and that's why couples stop using condoms, because sometimes you just want to have sex, a normal sex life, so sometimes you end up catching something " (Patricia)
The third element has to do with access to information about the risks of HIV/STI infection in relation to the use of injecting drugs and the need to use a condom in all sexual relations. In these circumstances, the women began to question their experience of the relationship and their chances of infection. However, negotiating condom use is difficult, due to the perception amongst the interviewees of the man as someone who is sexist and double standards in sexual relations, as well as the other issues considered earlier.
"Men are generally sexist. If a woman says 'let's have sex with a condom', the guy asks, 'but why? How many guys have you been with?' And she has to learn to control the situation, to say 'no, I don't want to, for this and this reason. If you want, that's the way it is, if not, then leave it'. But women don't have the guts to say that to the guy at the time. Because I reckon men think more or less like this: if a woman has a condom in her handbag, she is loose. She's not protecting herself, she's just a whore." (Ariane)
Another issue related to regular condom use has to do with the possibility of motherhood.9 If a woman was trying to avoid becoming pregnant, then a condom was substituted by other contraceptive methods considered to be more effective (the pill, tubal litigation). In situations where there was an interest in having children, a condom was obviously not being used. Seven women reported differing degrees of difficulties in becoming pregnant, which led them to stop using contraceptive methods and downgrade the possible risk of contracting STIs/HIV. Patricia's words highlight the importance of motherhood as an objective within a permanent relationship, and in the life of these women.
"When I got married, my life became a mess because of the child I never had. It was a very complicated life, do you see? Because I saw my colleagues with their family lives, with children, and me as a married woman who had formally married, living in her own house with furniture, who had everything and couldn't give my husband a son. So my life became hell because I thought I was a woman who couldn't give him a son." (Patrícia)
Drug use by the woman and her partner
Of the 15 interviewees, nine reported that they had used illegal drugs during their lifetimes, and two said that they had used injecting drugs. The use of injecting drugs by the women was not one of the criteria used in selecting study participants and was not indicated at the health unit, since it would lead to those women being classified differently for the manner in which they contracted the disease. This is consistent with a recent study about female injecting drug users,1 in which the majority of women reported that their HIV infection had come about as a result of sexual activity. The interviewees reported a series of high-risk situations that were both sexual (on account of the number of sexual partners) and related to drug use by themselves or their partner(s), making it difficult to determine the origin of the infection. The interviewees' narratives indicated that their definition of the infection's origins was based on a logic about sexual and temporal relations that was inconsistent with the technical rationale of health professionals.
An important finding is that partners of male IDU related to illegal drugs in ways that were considerably different from one to another and from their partners.
It is important to take into account that the subject of drug use is a sensitive one, raising as it does an illegal issue with considerable moral implications and therefore those women who are patients at the health unit at which the study took place may choose to not mention their partner's drug use, and particularly not their own. Nonetheless, existing reports show that trust was established with the interviewer and that interviewees showed a willingness to discuss values and lifestyles that are the subject of discrimination in wider society, at the health unit and even on the part of the women themselves at some points during the interviews.
Of the six women who reported that they had never used illegal drugs, there was an apparent ingenuity and/or ignorance about their partner's drug use and lifestyle prior to the discovery of their seropositivity. The discovery itself led to the revealing of these other aspects and tended to change their relationship with their partner and with drug use, either in the sense of leading to greater vigilance in relation to their partner's friendships and behavior, or by leading to the women seeking to negotiate condom use during sexual relations.
"(...) can you believe that I was his partner for seven years and I never doubted him (...) it was very silly, I didn't even smell anything because everything was so well done that you didn't smell it. At the beginning it was just marijuana, I got to know about it after having my first daughter, but I loved him for a long time and wasn't going to end our marriage because of that and he was working at the garage where he was allowed to smoke it, but he was working and we weren't in need of anything". (Priscila)
Two of the interviewees explained that they made a conscious choice not to use drugs, in spite of seeing their partners or family members using them. In one of the reports the subject even explains that she received support from her partner in the decision:
"Because I think that the person has to have their own opinion as well, don't they? There's no point following the tricks of others. You have to have your own personality as well, don't you? (...) He was a user but he always gave good advice and never pushed it. So, I was never curious". (Ariane)
"Never [did I use drugs], not from any lack of opportunity, because he was using drugs in my house, but I wasn't going to use them myself just because I loved him and because he was a user, I was forced to use it too, these are things that come from within us." (Maria Amelia)
This ingenuity and/or ignorance was not easily kept up for good, since the drug use tended to become more frequent and/or the kinds of drugs became harder. In this way, the negative consequences on work and on personal relations became more serious and it became harder for the partner to maintain her secrecy. An important factor in ending the secrecy was often the use of drugs in the home or in front of the family.
"Incredible as it may seem, I only saw my husband [use drugs] once inside the house. He was so careful about it that he never did it near us. When he started to smoke, he didn't like having anyone nearby and just did it on the sly my sister said that he injected ( ) she said that she saw it once ( ) I can't say, because I never saw it." (Priscila)
Among the nine women who said that they had used illegal drugs, there were differences in terms of how they started to use drugs, their relationship with the drug and the importance that this held in their relationship with their partner(s).
Some explained that they started to use drugs because of the tension in their relationship caused by a perceived difference in their habits. The decision to start using drugs was linked to the need to identify with their partner and his universe, and this would lead to a return to harmoniousness in the relationship.
"But it was partly out of love on my part, so one day I said I'm going to take some as well, I need to understand what goes through his head, I need to know what he feels, I need to live well with him. I began to take drugs, to snort, but I never injected anything ( ) but even like that all the arguments carried on because I couldn't do anything to stop him". (Helena)
For other women, the first use of drugs was linked to the family setting or lovers and friends. In these cases, the women were motivated by pleasure or curiosity.
Three interviewees used drugs and paid for their habits through commercial sex work. Vania didn't use condoms so as to speed up her clients' orgasms and return to her drug taking more rapidly "( ) all I did was sell my body over again, and get the money (for drugs)".
If the partner's use of drugs was not always immediately apparent to the interviewees, the use of injecting drugs was even more hidden. Even those who ended up sharing did not do so independently , since the drug use was linked to the presence of their partner and to his collaboration in the procedures involved.
Telma and Vitoria, injecting drug users, reported that they never learnt to inject themselves and depended for this on their partners, with whom they shared the equipment. They did not consider the risk of intravenous HIV infection through a lack of information and difficulties in adopting preventive methods when under the effect of the drugs.
"(...) I never knew how to inject myself, (...) he injected me (...) then injected himself (...) washed it normally, a normal needle ( ) because in a group of people using injecting drugs, you share the syringe, in the heat of it all you don't care, you just want to take the drug, so what happens is you end up getting infected". (Vitoria)
The women who used drugs reported that they were more careful in their use and the consequences were less damaging compared with their partners. They argued that the fact that they stayed at home, unlike their partners who would go outside to use drugs, protected them, since they were less exposed to violence, robbery and other incidences related to drugs. Some argued that their use was recreational and not very dangerous, and that it made their daily lives more pleasurable, such as cleaning the house or sexual relations. They contended that the use was more controlled since they still fulfilled their responsibilities as mothers and housewives.
"He was a heavy user and I also took drugs with him. But I was a balanced person, I didn't leave the house, didn't do anything wrong, prostitute myself, or rob or kill, I used them to pick myself up, to make me happy, they made me want to clean the house. I always looked after myself like I was someone important, and anyone who saw me like that thought that I was a proper lady ( ) but he was different, he used them and would leave home and not reappear for two months". (Patricia)
Risks and prevention after the HIV diagnosis
The discussion about prevention strategies after the diagnosis depended upon the marital situation at the time of the interview. Of the 15 women interviewed, six did not have a partner, while nine had a regular one. Of the nine with a regular partner, five stated that they regularly used a condom, two said they did not use one and two said that they occasionally used one. Those who did not regularly use a condom believed that their partner was seronegative, while of those who did regularly use a condom, two had seropositive partners (the same partner from the time of becoming infected) and three were seronegative. Regular condom use seemed to be associated with the take-up of recommendations given by the health unit, in spite of difficulties in ensuring their effectiveness.
"I changed just these last few days, now [to use a condom]. I was scared of having sex and the condom bursting, I thought that more of the virus would pass to me and I would pass more to you. Now I use a condom properly. Sometimes it bursts and I swear at him and argue with him. It's normal [to use a condom], I feel the same thing as not using one." (Sonia)
"(...) it is good... hygienically its better still... you now that you are not going to get contaminated if the partner is good, its good, and if the partner is bad, its bad with or without the condom if its not good, then change partner " (Ariane)
Among those respondents who did not use condoms, one had a regular female partner for the last four years. She did not speak about prevention with her partner, but said that she would use a condom if she had relations with a man. The other argued that for people who live a "life of crime" the use of a condom made no sense. "I don't want that for me".
The one woman who reported occasional condom use explained the difficulty in regular use because her partner, who was aware of her seropositivity, refused to use a condom, because he loved her and did not think the possibility of infection was important.
Life changes after the HIV diagnosis
The seropositive diagnosis was a heavy blow for all the women and for some was seen as the equivalent of a death sentence. With the passage of time and the gradual involvement of the health unit and the reality of treatment, the seropositive status became less central to the women's lives and for some, meant the revaluing of their lives and redefinition of their priorities. The priorities of all the women were similar and included in particular caring for their children, which implied keeping themselves healthy, looking after themselves and looking to improve their quality of life.
"Ah, life became more important to me, waking up in the morning, seeing my children, seeing my mother, to be able to get up and go out and work, I forget that I have the virus, I only remember when I take the medication. Ah, I don't let the fact that I am sick even enter my mind". (Vitoria)
Of the nine women who used illegal drugs, one acknowledged that she used marijuana at the time of the interview. This reduction in drug use may be a result of the work of the health services, even if only partially. However, the complete abidance by the advice of the health unit involved difficulties and dilemmas which were probably not easily communicated with the health professionals.
The study pointed out differences in the ways that women lived with drug use, be it their partner's or their own. The invisibility of the issue of illegal drug use in society and in health services makes these women more vulnerable.7
From the women's own point of view, the use of drugs by their partner is not, in principle, associated to the risk of infection of HIV/AIDS. This was either due to ignorance or ingenuity of the habit of their partner(s), or because they believed that the monogamy-fidelity-trust triangle was itself a form of protection.7-9
Nonetheless, drug use formed part of the women's universe, with a proportion using drugs themselves for recreational purposes and/or to bring them closer to their partner, and all sought to give meaning to their married/family lives and to their seropositivity in this context. The environment of drugs is precariously associated with an increased risk of HIV infection.7,6
While the information here relates to a specific population, from the point of view of the health service, the study also raises issues that could be applicable to other infections that are transmitted either sexually or through the transmission of blood.
In health services, the main prevention strategy recommended to the women is to use a condom in all sexual relations, a practice that is difficult to stick to for couples who are in stable relationships.7,3,4,5 In order for the vulnerability of this particular group to be reduced, it is important to consider the increased risk when their partner is a IDU and/or they themselves are drug users, factors which do not seem to have been given much consideration. As a result, there is no opportunity to consider different kinds of relationships such as the ones presented here.
At the same time, it is important to be wary of stigmatizing and stereotyping these women as a specific and homogenous group. The data here shows that these women share identity references, lifestyles involving family and partners, and life projects that are very similar to those of women from the same social stratum who are not seropositive. Opportunities to discuss their issues within the health units can be considered effective in terms of prevention and care in so far as there is acceptance and respect of the subjects' lifestyle choices, the concrete elements that lead the women to come to seek the service and the symbolic universe that forms the basis of their life choices. For this to happen, a critical reflection of the healthcare professionals is needed, based on the imposition of moral values that permeate the care services provided.
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Ana Flávia d'Oliveira
Departamento de Medicina Preventiva - FMUSP
Av. Dr. Arnaldo 455 2ºandar, sala 2245
01246-903 São Paulo-SP
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