Abstract
Drug regimens and procedures now exist that will prevent parents from transmitting HIV to infants, and the ethical and legal obligation to promote and protect the reproductive rights of those living with HIV should form part of training for HIV/AIDS care and prevention. This paper reports a study that investigated issues of sexuality and reproduction with 250 Brazilian men living with HIV in São Paulo. We asked whether they wished to have children and whether health professionals in HIV/AIDS treatment clinics that they attended were supportive of their wishes. Health professionals were not considered by most participants to be supportive enough or even impartial about HIV-positive people having children, and paid little attention to men's fathering role. 80% of the men had sexual relationships, and 43% of them wanted children, especially those who had no children, in spite of expectations of disapproval. Few of the men received information about treatment options that would protect infants, however. In previous studies with HIV-positive women attending the same clinics, by comparison, greater knowledge about prevention of perinatal HIV transmission was reported, but women had fewer sexual relationships, fewer desired to have children, and they expected even more disapproval of having children from health professionals. We conclude that the rights of those with HIV to found a family depend as much on curing the ills of prejudice and discrimination, including among health professionals, as on medical interventions.
Résumé
Des procédures et régimes médicamenteux évitent désormais aux parents de transmettre le VIH aux nourrissons, et l'obligation éthique et légale de protéger les droits génésiques des personnes séropositives devrait faire partie de la formation aux soins et à la prévention du VIH/SIDA. Une étude a demandé à 250 Brésiliens séropositifs de São Paulo s'ils souhaitaient avoir des enfants et si les dispensaires de traitement du VIH/SIDA qu'ils fréquentaient appuyaient leur souhait. La plupart des participants ont jugé que les professionnels de la santé n'approuvaient pas, voire désapprouvaient, leur désir d'enfant et accordaient peu d'attention ar ôle procréateur des hommes. 80% des hommes avaient des relations sexuelles, et 43% d'entre eux voulaient des enfants, en particulier ceux qui n'étaient pas encore pères, même s'ils s'attendaient à tre réprouvés. Pourtant, peu d'hommes étaiênt informés des options de traitement qui protégeraient les nourrissons. Des études précédentes ont montré que les femmes séropositives fréquentant les mêmes dispensaires connaissaient mieux la prévention de la transmission périnatale du VIH, mais elles avaient moins de relations sexuelles et moins envie d'enfants, et elles s'attendaient à encore plus de désapprobation de la part des professionnels de la santé. Nous en concluons que le droit des personnes séropositives à fonder une famille dépend autant du traitement de ces maux que sont les préjugés et la discrimination, notamment parmi les professionnels de la santé, que des interventions médicales.
Resumen
Existen actualmente regı́menes médicos e intervenciones para prevenir la transmisión del VIH de padres a bebés, y el deber ético y legal de promover y proteger los derechos reproductivos de las personas viviendo con VIH deberı́a formar parte de la capacitación en la atención y prevención del VIH/SIDA. En una investigación sobre temas de sexualidad y reproducción con 250 hombres brasileños viviendo con VIH en São Paulo, les preguntamos si deseaban tener hijos y si los profesionales de salud en las clı́nicas donde ellos recibı́an tratamiento de VIH apoyaban sus deseos. La mayorı́a de los participantes no consideraban que los profesionales de salud apoyaran sus deseos ni que fueran siquiera imparciales en sus juicios acerca de la posibilidad de que las personas viviendo con VIH tuvieran hijos. Prestaban poca atención al papel paterno de los hombres. Un 80% de los hombres tenı́an parejas sexuales y un 43% querı́an tener hijos—especialmente quienes no los tenı́an—a pesar de las opiniones en contra. En estudios anteriores con mujeres viviendo con VIH que asistı́an a las mismas clı́nicas, se reportó un mayor conocimiento de la prevención de transmisión perinatal de VIH, pero las mujeres tenı́an menos parejas sexuales y menos deseo de tener hijos, y esperaban aún menos comprensión de parte de los profesionales médicos. Concluimos que los derechos de las personas viviendo con VIH a fundar una familia depende tanto de curar los males de prejuicio y discriminación como de las intervenciones médicas.
One of the most remarkable advances in HIV treatment and prevention since 1996 has been the development of drug regimens that effectively prevent transmission of HIV from a positive mother to her baby. If the mother uses combined antiretroviral drugs, elective caesarean delivery is performed and an alternative form of infant feeding replaces breastfeeding, perinatal transmission rates can be reduced to 0.8%.Citation1 At the same time, it is possible for an HIV-positive man to become a father without the risk of infecting his wife and without risk to the baby if the couple use assisted conception techniques of sperm washing and inseminationCitation2Citation3 which greatly reduce the risk of viral transmission.
Brazil's HIV/AIDS prevention and control policy includes, by law, universal, free-of-charge access to antiretroviral drugs which, along with prophylaxis against opportunistic infections and decentralisation of delivery of these services to the local level, have reduced AIDS mortality rates by 50% and hospital admissions by 75%.Citation4
Despite these rightly celebrated successes, much remains to be done. Although in São Paulo State, HIV testing must be offered with informed consent to women attending antenatal clinics,Footnote* many women are not in fact offered the test routinely during pregnancy.Citation5Citation6Citation7 Up to the year 2000, the estimated perinatal infection rate was still as high as 12%,Citation8 and had not fallen further because of lower coverage with preventative measures during antenatal and delivery care than expected. The Brazilian Society of Paediatrics, funded by the Brazilian STD/AIDS Programme, is currently conducting a multicentre research project in Brazil on vertical transmission of HIV. From January 2000 to December 2002, 3,370 mothers and their babies were accessed in 62 health care centres in 20 Brazilian states. The transmission rate in the year January–December 2000 was 7.6% (Dr Regina Succi, project co-ordinator, personal communication, 2003), which suggests that these rates have begun to fall and coverage is improving.
Many people with HIV do not have access to full information about HIV testing and treatment, and as this paper will show, their desire to have children is not well received in Brazil. The aims of our work in university-based AIDS prevention research and in government training and referral centres on STIs and AIDS in São Paulo have been to understand HIV/AIDS treatment and care needs from the point of view of those with HIV and AIDS, and to show how health workers' attitudes and the prescribed norms for models of AIDS care result in the stigmatisation of patients and the consequent violation of their rights. This paper reports a study that investigated issues of sexuality and reproduction with 250 Brazilian men living with HIV in São Paulo and compares their views and experience with those of HIV-positive women attending the same clinics, drawing on data from previous studies we conducted.
Stigma and discrimination against people with HIV infection
Controlling the AIDS epidemic calls for a radical shift in attitudes towards AIDS, which are marked by the stigmatisation of people who are HIV-positive. This task will be all but impossible unless normative definitions of gender relations between the sexes and what constitutes “family” are seriously rethought. These issues have seldom been part of the discussion on citizenship and rights in Brazil, though they have been discussed widely in the social sciences.Citation9 Yet how many health workers, or formal and informal HIV/AIDS educators, have incorporated into their knowledge base what is known about the historical and cultural construction of definitions of the family, or question the determination of what is proper behaviour for men and for women?
Both in AIDS education and prevention and in the organisation of health care for those with HIV/AIDS, reproduction and childcare continue to be thought of as women's affair (or problem), something arising from the nature of being feminine, while men are rarely perceived or addressed as (future) fathers. As a result of this mentality, clinicians specialising in AIDS care, including in the AIDS referral centres where our studies are carried out, are stunned and do not know how to respond when men living with HIV say they want to start a family.
Stigma and discrimination are social responses to AIDS that can only be understood in terms of the broader relations of power and domination in society, which reflect and reproduce inequalities of class, gender, age, race, ethnicity, sexuality and sexual orientation. The symbolic violence which existing stigma and discrimination represent are interweaved with responses to HIV, intensified by association with notions of contagiousness and the fear of AIDS as inevitably fatal.Citation9 The continuous association of HIV with sexual promiscuity, family disorganisation and drug use, all dimensions of life that are associated with “incurable deviancy”, helps to explain why so many challenges remain in organising care for people living with HIV.
The literature on the Brazilian family describes the deconstruction of a single normative model (the traditional nuclear family) for procreating and raising children. Demographic studiesCitation10 have consistently shown that conjugal and family organisation, including the formation of the extended family, vary widely in Brazil, despite the clear hegemony of Christian beliefs among most Brazilians—and among the men living with HIV who were interviewed in this study. The traditional nuclear family is not the only option for fulfilling the modalities of love associated with it. Given the diverse modalities of conjugal, sexual, emotional and family bonds, few actual families have formed in ways compatible with traditional ideas and expectations. Thus, children grow up being educated along whatever possible lines their histories have been written. With or without HIV, a single domicile in Brazil today often brings together more than the nuclear family: children from different marriages live together as siblings; in the poorer classes, children circulate between adults without formal adoption;Citation11 houses are crowded together, and the structure of tenements and shared plots make children a common asset (or as some believe, a common liability). In most cases, a “proper education”, “proper family”, “proper parental love”, at least in line with what is traditionally considered necessary to family life, have become an unlikely ideal.
Whatever re-arrangements for the upbringing of children have come to define the actuality of family life, they are not the exclusive preserve of families with HIV-positive members, nor of other groups who are stigmatised as “anti-family” and to whom the opposite of true domestic, peaceful, respectful love is attributed.
Men and women living with HIV have children
In the course of our studies at gold-standard HIV/AIDS care and training centres in São Paulo, one of the issues that emerged during our first project with women living with HIV, most of whom had children both before and after they learned they had HIV,Citation5 and which has inspired further projects with women,Citation12Citation13 was the need for more comprehensive approaches that are able to reach beyond clinical care for HIV-related illness. These include care and counselling for HIV-positive women's reproductive health problems and in relation to family life.
In recent years, numerous studies and discussions have focused on the reproductive intentions, decisions and rights of HIV-positive women. Yet there is very little in the literature on the reproductive intentions, decisions and rights of men living with HIV, or the issue of HIV-positive men's family lives, which are wrapped in a cloak of invisibility, and which are the subject of this paper. To address these, we should start by deconstructing the notion of genderCitation14 that even today sometimes considers that to analyse gender relations and issues means to speak of women alone.
Study methodology
At the end of 2001, we interviewed a sample of 250 men at two outpatient referral units—the Centro de Referência e Treinamento DST/AIDS (CRT), where some 4,500 HIV-positive patients receive care, and the Casa da AIDS at the University of São Paulo School of Medicine, which provides care to around 3,900 HIV-positive patients. These two centres have achieved Brazil's highest antiretroviral treatment adherence rates, an important indicator of the quality of care provided.
Men arriving for outpatient visits were asked if they considered themselves to be “a man who has sex with women”. All those who said yes were eligible to participate. Consenting participants answered a face-to-face questionnaire regarding demographic characteristics, impact of HIV diagnosis, drug-using behaviour before learning of their HIV-positive status, whether they perceived they were at risk of HIV sexually before they underwent testing, knowledge about vertical transmission of HIV, attitudes toward fatherhood, and information about reproductive health care. The project was approved by the Ethics Committees of CRT and Casa da AIDS. All participating men were invited to a group session afterwards where we presented the results of the study. Five follow-up group sessions with 20 of the men occurred at CRT.
Participants' profile
The mean age of the men was 39 (range 17–74). They had had an average of nine years of schooling—20% had attended higher education, 34% had had secondary schooling, 13% had completed primary school and 3% had had no schooling at all. Most described themselves as white (58%) and employed (60%); 25% were retired and 15% were unemployed. Half of them practised their religion actively—50% were Catholic, 18% Evangelical Protestants, 10% Spiritualists, 9% other religions and 11% no religion.
The men shared their homes with an average of 3.2 other people (range 1–14). The mean family income was 3.7 times greater than the minimum wage in Brazil (which at the time of the study was about US$45 a month), ranging from nine men who had no income at all to one who earned 60 times the minimum wage per month.
The men had known of their HIV-positive serostatus for an average of 5.7 years (range 1 month to 17 years), and 55% of them had not been expecting a positive test result when they received it. Most of them believed they had been infected by sexual contact, while 13% thought they had been infected by injection drug use and about 6% could not say how they had been infected. The great majority (92%) were taking antiretroviral medication, which is provided free of charge at the centres where they were receiving care.
Partners and children
Overall, 40% of the men were married, 45% were single, 10% were separated and 5% were widowers. At the time of the study, the majority of the men (80%) were in sexual relationships with women, and in the previous year, 42% had one regular sexual partner, 26% had from two to five different partners and 12% had more than six partners. A considerable number (38%) of the men had also had sexual intercourse with men in the course of their lives, and 23% in the previous year. Of the men who said they had a regular sexual partnership, 32% said their partner was also HIV-positive, 60% said their partner was HIV-negative and 13% did not know.
Most of the men (56%) had children and the majority of the children (53% of 289) lived with the men in the same household. Only 13% of their children had been born after the man had tested positive for HIV. Of their 289 children, 249 were HIV-negative, five were known to be HIV-positive and the status of 35 was unknown. Low rates of HIV positivity in the children may also be explained by their ages, since the average age of the children was 14 and 26% of the children were aged 20 years or more.
Of the 140 men who said they were fathers, most of them (81%) had biological children (256 children), among whom four were seropositive. Ten men (7%) had only “adopted” children (33 children) that is, children whom the men identified as being theirs but who were not their biological children. These children were not always legally adopted, but lived with the men and were cared for by them. Some of the men (12%) had both biological and adopted children, with a mean of one adopted child per family. Nine of the adopted children had been born after the father was diagnosed as HIV-positive, and one adopted child was HIV-positive.
All the men were asked if they wanted to have children in the future; 43% responded yes, 52% responded no, and 5% did not know. The wish to become a father did not vary significantly between the bisexual and the heterosexual men. The proportion of respondents wanting to have children in future was significantly higher among those who had no children and among single men (p<0.01 and p<0.05, respectively). The reasons why those who answered yes said they wanted to have (more) children in future were as follows:
“Because I want a girl, and I already have a boy.”
“I want to have more children.”
“I would like to form a family.”
“I haven't got any children!” (8%)
“Because my wife wants a baby.”
“Because I've just got married.”
“I've re-married.” (1%)
“It's my dream.”
“Children give joy and meaning to life.”
“I adore children!” (15%)
“Because it's an obligation, and it's beautiful bringing up a child.”
“To have someone to give continuity.”
“To leave a seed.”
“What man wouldn't love to have a baby? Because it makes me feel more of a man!” (11%)
The reasons why the 52% who answered no said they did not want to have (more) children in future were as follows:
“I can't: I've had a vasectomy.”
“I would if I could, but I've had the operation.” (7%)
“I would, but I haven't got any money.”
“I would if I didn't have this condition.” (11%)
“I've got enough already, I'm old now.”
“I think I've got enough, and moreover I'm ill.” (17%)
“I don't want to infect another child.”
“It would be horrible to have a child with this disease.”
“I don't want a stigmatised child.” (10%)
“I'd rather adopt.” (4%)
“I've never wanted to have a child.”
“It's too much of a responsibility.”
“I wanted to, but now that I've got a boyfriend I don't feel the inclination any longer.” (13%)
Their answers demonstrate that many of them felt a deep love for children, while others were seeking to be protective about the risks of infection and stigmatisation of future children.
Despite the high proportion of men who felt a desire to have children, knowledge about mother-to-child transmission of HIV was scant (Table 1)
Table 1 Percentage (%) of HIV-positive men receiving information on mother-to-child transmission of HIV by source of information (n=250)
In addition, the health services where the men were receiving HIV/AIDS care were not the main source of whatever information they had on any aspect of mother-to-child transmission of HIV. Indeed, the media were the most common source, with all other sources, whether leaflets from the clinic, friends or NGOs, being almost no help at all. Only on the subject of contraceptive use, and even more the importance of condom use, were the clinics their most important source of information.
There was no significant correlation between the desire to have children and the level of information on mother-to-child transmission of HIV, nor with already having a child either living with HIV or one whose serological status was unknown.
When asked how they imagined their doctor would react if they expressed the desire to have children, half the men thought the doctor would be against it (38% said “moderately against it” and 12% “strongly against it”), while 24% expected an impartial and professional attitude. Only 10% thought the doctor would support any decision they made and offer guidance. The remaining 16% had either not thought of talking about it with their doctors or felt they would be unable to.
The desire to have children among the men did not appear to be significantly affected by the imagined reaction of their doctors. What seemed more important was whether they felt at ease talking about the subject with the doctor. When asked how comfortable they would feel talking with the different health care professionals at the centres they attended, they said they considered it much more difficult to talk about their concerns about their sexuality and reproductive lives than any other issue, regardless of the specialism of the health worker. They considered their infectious diseases physician, their main doctor, to be the health professional with whom they would be most at ease talking about sexuality. On a scale of 1 to 12 for ranking how comfortable the men felt talking about their sexual lives with the health professionals they had access to, the mean was low at 6.4
São Paulo, Brazil, 2002
Discussion
We have to ask why communication with HIV-positive men on the subject of having a family has been so limited, even on the part of health workers with specialist training and sensitivity to issues of AIDS stigma who are working in specialist AIDS clinics. What interests are served by the continued stigmatising assumption that men who are HIV-positive are “not family men”? This form of discrimination violates their constitutional right to form a family, and shows that although their health care is based on excellent technical knowledge it is entirely lacking in ideological self-awareness. How best can the prevalent mentality be challenged?
The desire for fatherhood appears strong among many Brazilian men living with HIV, just as the desire for motherhood does among the women. Some men want to have children with new partners, others for the first time; some want biological children while others have chosen to be adoptive fathers. Proportionately twice as many men in this study wanted to have children as HIV-positive women in our previous studies but they have many of the same concerns and wishes as the women.
A number of studies among men,Citation15 including younger Brazilian men,Citation16 indicate that the desire to have children is central to the construction of masculine identity. Demographic studies too have shown that men often prefer larger families than women.Citation17 Yet fatherhood is nearly always neglected in health policies and programmes, both those promoting family planning and those dealing with preventing unwanted pregnancy, not to mention general health care. Although there is progressive thinking in Brazil regarding women's health programmes, almost nothing is heard of initiatives that have incorporated this dimension of men's lives. HIV/AIDS programmes, which are among the most advanced and progressive areas of public health in Brazil, tend like all the others to go on reproducing the old gender stereotypes.
In preliminary studies with HIV-positive women attending the same health centres and using the same questionnaires, we found that 14–20% wanted to have (more) children,Citation5Citation12Citation18Citation19 a wish also significantly associated with having only one or no children. Unlike the men, however, around half the women interviewed had no active sex life. A larger proportion of women than men (around 75%) had information about mother-to-child transmission of HIV.Citation12Citation13Citation18Citation19 When asked about their doctors' reactions, a slightly larger proportion of the women than the men believed that their doctor would be “against it” (28–38%) and many more believed the doctor would be strongly against it (22–30%).Citation18Citation19
Among women attending the same clinics as the men in our studyCitation5Citation6Citation13Citation19 we found that a similar percentage were married (33–42%), but there was a larger proportion of widows (20–30%) and a smaller percentage of single women (28–37%) as compared to men. The number of HIV-negative spouses was similar among the men in our study to those of the women (42%) who participated in the preliminary studies,Citation5Citation6Citation12Citation18Citation19 but a far larger percentage of the women had had children (77%), an average of two children each.
This paper analyses HIV-positive men's and women's levels of information, their reproductive intentions and their perceptions of how their reproductive needs are received. Once people have the information they need, however, they still need access to services (whether for contraception or assisted conception, for instance) both to attain sexual health and act on their reproductive decisions, and they are affected by the way in which their decisions about their lives are received by health professionals.Citation20Citation21
One of the demands we encountered, from men and women who participated in these studies and in the follow-up group sessions, has been for support to confront the effects of the stigmatisation of having HIV, to face the difficulties of dealing with their condition when seeking new emotional ties, and having to maintain, day in and day out, protection against re-infection or infection of their HIV-negative partners, and to decide about family planning.Citation22
The way the participants in this study perceived their doctors' attitudes towards the desire of HIV-positive men to become fathers, with as many as two-thirds of the men fearing a response of disapproval, may explain the insufficient level of information they had with regard to preventing mother-to-child transmission of HIV, which was an even bigger problem among the men than the women we interviewed. The men were unable to talk about the subject comfortably. Yet in spite of the silence and the expectation of being reprimanded, they go on having children—as many children on average as other Brazilian men and women.Citation17
One study, in press at this writing,Citation23 observed health workers at HIV/AIDS care centres in both individual and group sessions with women (medical appointments, counselling sessions, pre- and post-test counselling and antenatal groups). The researchers also observed health workers doing case assessments of women and in the waiting rooms in health centres. Their findings reinforce the negative perceptions reported by the men and women we have interviewed for this and previous studies. They note that from the patients' point of view, women's reproductive needs are obvious to anyone present in facilities providing care for women living with HIV. Yet these needs are disregarded, made invisible or treated as problems that arise in the course of giving treatment to prevent mother-to-child transmission or control HIV infection clinically. Although the health workers follow up HIV-positive mothers-to-be, they are reluctant to talk about or deal with the singularities of the HIV-positive woman. Moreover, outside the clinic they express their disapproval of the decision by those with HIV infection to have children. Their involvement is:
“… The health workers seek to ground their discourse in technical–scientific norms, but they cannot dissociate this from a moral judgement on patients' choices and different ways of living their lives, as is indicated by comments they make, e.g. that the women continue getting pregnant despite HIV and by their recommendation of tubal ligation after a certain number of children.” Citation23
Conclusion
Wanting to have children is a legitimate wish for men and women, whether for religious reasons, to give meaning to life, because of the gender norms in which they have been socialised, to construct their feminine or masculine identity, or because they like children. Almost half the men in our study wanted to have (more) children. How many couples affected by HIV would like to have children and how many could have their wish if they were appropriately informed about the possibility of having a healthy baby and their reproductive rights?
We do not seek to discount the fears of health workers, who felt such anguish in the face of a pregnancy, at the stigma of HIV disease and at the possibility—however small, even with the right care—of a child being born HIV-positive. But why is that anguish expressed by the denial of the right to information and counselling that would acknowledge the patients' wishes and encourage an informed decision?
Men and women need support in order to deal with their emotional and sexual desires at the same time as they deal with the fact that they are HIV-positive. They need support to take informed decisions, as couples and as families, about whether or not to have children and how to take steps to protect the children they are having from HIV infection.
To judge from what the men in this study said, it would appear that their role and responsibilities as fathers is not reinforced at the clinics they attend, as the socialisation of men generally does not encourage them to be co-responsible for the reproductive part of their sexual lives. Instead, perceptions of the sexuality and reproductive intentions of those with HIV infection continue to be confined to the stereotypes of promiscuity constructed at the outset of the epidemic—homosexuals and transvestites, drug users, sex workers and everyone else considered promiscuous—who, according to culture and tradition, should not have children.
Wives and mothers, who are supposed to be safe and protected by marriage, are—like the husbands with whom they have sexual relationships—not associated with images of those living with HIV. HIV infection does not fit the meaning of wife–mother or husband–father. Conversely, when women and men fit the profile of wife–mother and husband–father, they seldom receive attention from the health system as regards their potential vulnerability to HIV (e.g. women are not offered an HIV test during antenatal routines).Citation7Citation13 At the same time, those who are HIV-positive are rarely thought of as fathers, mothers and spouses.
These stereotypes, which are still dominant, contribute to wastage of social resources that could be helping to reduce useless suffering. It is urgent to deal with health workers' prejudices and help them to work through their anxieties about the future of the family members they are treating, particularly the children. Health and education programmes for those with HIV should not be contributing to the stigmatisation and lack of support that end up producing social exclusion, and consequently the “maladjusted behaviour” that those with HIV are stereotypically thought to have.Citation24
Health professionals in the two centres of excellence for HIV/AIDS prevention, care and treatment where our studies were carried out, were not considered by most of the participants in the studies, men or women, to be supportive or even “impartial” in their judgements on the issue of those with HIV having children. This is a highly paradoxical situation in view of support for other rights of people living with HIV, particularly the right to high quality HIV/AIDS clinical treatment, and even though these centres of excellence are still an exception in the Brazilian public health service. Equally paradoxically, it seems to be less difficult nowadays to show respect for diverse expressions of sexuality, at least among those working in HIV/AIDS. Yet it remains next to impossible to acknowledge and accept the desire for fatherhood and the diversity of family life among HIV-positive men and women.
Based on these studies, we recommend that the cultural stereotypes and prejudices present in care for people living with HIV/AIDS should be addressed with the health workers who provide care, helping them to understand how stigma and discrimination still operate in health services as advanced as those in the HIV/AIDS field. The ethical and legal obligation to promote and protect reproductive rights must form part of training and planning for HIV/AIDS care and prevention. After 20 years of the epidemic, it has been recognised that every technical-scientific advance in the AIDS field depends on a radical commitment to protecting and promoting human rights. This has been a major focus of concern for activists and policies to control the AIDS epidemic, in Brazil and around the world.Citation25Citation26 The right to found a family and have children seems to depend, as always, on curing the greater ills of prejudice and discrimination. It also depends on integrated interventions that challenge the process of stigmatisation.Citation27
Acknowledgements
This article is based on a longer article published in Psicologia USP 2002;13(2) and is reprinted here with kind permission of the editor. We thank Dr Norman Hearst of the University of California–San Francisco, to whom this project is indebted, for his financial and scientific support. Our thanks also to Vanda Nascimento, Éline Batistella, João Bosco Alves de Souza, co-workers on this project, the interviewers, and the National Research Board (CNPq) for Tiago N Lima's scientific initiation scholarship and Vera Paiva's research productivity grant. The studies were approved by the Institutional Review Boards of the University of São Paulo Medical School and the other centres where they were conducted. Translation from Portuguese to English was by Peter Lenny MIL.
Notes
* Law No. 10.449 of December 20, 1999. Official Gazette (D.O.E.), 21/12/99.
References
- L Mandelbrot, J Lê Chenadec, A Berrebi. Perinatal HIV-1 transmission: interaction between zidovudine prophylaxis and mode of delivery in the French Perinatal Cohort. JAMA. 280: 1998; 55–60.
- A Semprini. Reproductive counseling for HIV-discordant couples. Lancet. 349: 1997; 1401–1402.
- S Marina, F Marina, R Alcolea. Human imunodeficency virus type 1- serodiscordant couples can bear healthy children after undergoing intrauterine insemination. Fertility and Sterility. 70: 1998; 35–39.
- Ministério da Saúde. AIDS: The Brazilian Experience. 2001; Ministério da Saúde: Brası́lia, 24.
- NJ Santos, E Ventura Filipe, V Paiva. HIV positive women, reproduction and sexuality in São Paulo, Brazil. Reproductive Health Matters. 6(12): 1998; 31–41.
- NJS Santos, CM Buchalla, E Ventura Filipe. Mulheres HIV positivas, reprodução e sexualidade. Revista de Saúde Publica. 36(Suppl 4): 2002; 4–11.
- HHS Marques, MRDO Latorre, M DellaNegra. Deficiencies in diagnosing HIV infection during pregnancy in Brazil, 1998. Revista de Saúde Pública. 36(4): 2002; 385–392.
- CL Szwarcwald, A Barbosa Jr, MGP Fonseca. Estimativa do número de crianças (0–14a) infectadas pelo HIV, Brasil, 2000. Boletim Epidemiológico AIDS CN DST/AIDS-MS. 15(1): 2001; 49–54.
- R Parker, P Aggleton. Estigma, discriminação e AIDS. 2001; ABIA: Rio de Janeiro.
- E Berquó. Arranjos familiares no Brasil: uma visão demográfica. História da Vida Privada no Brasil. Vol. 4: 1988; Companhia das Letras: São Paulo.
- C Fonseca. Pais e filhos na famı́lia popular. MA D'Incao. Amor e Famı́lia no Brasil. 1989; Contexto: São Paulo, 94–128.
- Women and Aids: Challenges for Health Services. Enhancing Care Initiative/ Brazil, 2001. At: 〈http://www.eci.harvard.edu/eci_teams/brazil/index.html〉. Accessed August 2003.
- AC Segurado, SD Miranda, MRDO Latorre. Evaluation of the care of women living with HIV/AIDS in São Paulo, Brazil. AIDS Patient Care and STDs. 17(2): 2003; 85–93.
- Scott JW, Gênero: uma categoria útil de análise histórica. In: Lopes EMT, Louro GL, editors. Educação e Realidade. Número Especial Mulher e Educação. 1990;15(2): 5–22.
- RW Connell. Masculinities: Knowledge, Power and Social Change. 1995; University of California Press: Berkeley.
- V Paiva, C Peres, C Blessa. Youths and adolescents in the age of AIDS: reflections about a decade of work in HIV prevention. Psicologia USP. 13(1): 2002; 55–78.
- BENFAM—Sociedade Civil do Bem Estar Familiar no Brasil. Pesquisa nacional sobre demografia e saúde, 1996. 1997; BENFAM: Rio de Janeiro.
- V Paiva, I França-Jr, J Ayres. Sexuality and reproduction, care and rights of men and women living with HIV in São Paulo, Brazil. Antiviral Therapy. 8(Suppl. 1): 2003; S484–S485.
- V Paiva, MR Latorre, N Gravato. Sexuality of women living with HIV in São Paulo. Cadernos de Saúde Pública. 18: 2002; 109–118.
- V Paiva. Gendered scripts and the sexual scene: promoting sexual subject. R Parker, RM Barbosa, P Aggleton. Framing the Sexual Subject: The Politics of Gender, Sexuality and Power. 2000; University of California Press: Berkeley, 216–241.
- DR Knauth, RM Barbosa, K Hopkins. Cultura médica e decisões reprodutivas entre mulheres infectadas pelo vı́rus da AIDS. Interface—Comunicação, Saúde, Educação. 6(11): 1992; 39–54.
- L Tunala, V Paiva, E Ventura Filipe. Fatores psicossociais que dificultam a adesão das mulheres portadoras do HIV aos cuidados de saúde. P Teixeira, V Paiva, E Shimma. Tá Difı́cil de Engolir?. 2000; NEPAIDS/CRT-DST/AIDS-SP: São Paulo, 79–112.
- Oliveira LA. Demandas reprodutivas e a assistência às pessoas vivendo com HIV/AIDS: limites e possibilidades no contexto dos serviços de saúde especializados. Artigo de encerramento do Programa de Metodologia de Pesquisa em Gênero, Sexualidade e Saúde Reprodutiva/NEPO/UNICAMP, 2002. (In press 2003)
- S Dreman. Is the family viable? Some thoughts and implications for the 3rd millennium. S Dreman. The Family on the Threshold of the 21st Century: Trends and Implications. 1997; Lawrence Erlbaum: London, 283–294.
- P Teixeira. Cuidados universals con el paciente de SIDA. La Epidemia em las Megalopolis. February. 2002; UNAIDS/UNESCO/CN-DST AIDS/DST-AIDS: São Paulo.
- J Mann, D Tarantola. Aids no Mundo. 1994; Relume–Dumará/IMS/ABIA: Rio de Janeiro.
- P Aggleton. HIV and AIDS—Related Stigmatisation, Discrimination and Denial: Forms, Contexts and Determinants. 2000; UNAIDS: Geneva.