Pregnancy in an HIV-positive woman often carries serious consequences. Without treatment, about a third of HIV-infected mothers pass the virus to their newborns. Many of these children eventually sicken and die of AIDS. Worldwide, some 3.8 million children younger than 15 years old have already died in this way.1
Some HIV-positive women choose to conceive, despite the chances of a poor pregnancy outcome. Other sexually active, HIV-positive women want contraception. Providers need to understand how to counsel and serve HIV-positive women, and providers should know that some HIV-positive women will not reveal to them that they are infected.
In settings where HIV prevalence is high, family planning providers should discuss with clients how HIV could affect family health. Ideally, contraceptive counseling should include a description of HIV risk factors and an evaluation of the client's risk of infection. Some programs may also be able to offer HIV testing to women at high risk for HIV infection.2
Desire for children
Most HIV-infected women do not know their HIV status before they conceive. Some may only find it out when they receive antenatal services, if testing is available. Still, other HIV-infected women know their HIV status before they conceive. Sixteen of 52 HIV-positive women interviewed in Zimbabwe, for example, became pregnant after their diagnosis, with seven of the 16 pregnancies desired.3
All seven women with desired pregnancies very much wanted to have a child and their pregnancy histories reveal that some were prepared to risk their health to have a child who would survive. Unfortunately, only one had a healthy baby. Such grim pregnancy outcomes for HIV-positive women are not uncommon in Zimbabwe.
"In Zimbabwe, as in most places, the desire of women to have children is rooted in a context of a need for both love and financial security, especially where women are economically vulnerable," explains Dr. Rayah Feldman. "Marriage, especially if lobola or bride-price has been paid by a man's family to a woman's family, is based on an expectation of having children. Also, many women find personal satisfaction in having children." Dr. Feldman was an advisor for the Zimbabwean research developed by the London-based International Community of Women Living with HIV/AIDS in collaboration with the Zimbabwean Women and AIDS Support Network.
Antiretroviral treatment during pregnancy to prevent mother-to-child transmission is unavailable to all but a few women in Zimbabwe and most other developing countries. Also, almost all women breastfeed their babies, providing another route of infection.
In Kenya, "HIV-infected women who do not have any children tend to want to have at least one baby and we now have access in a few hospitals to affordable drug regimens to reduce mother-to-child HIV transmission," says Dr. Zahida Qureshi, an obstetrician and lecturer at the University of Nairobi. "But even when these drugs are not available, HIV-infected women want to have babies, regardless of the risks involved."
A 27-year-old Kenyan housewife explained in an interview why she wished to conceive, despite the fact that both she and her husband are HIV-positive. "My husband doesn't want any children. ... But I want a child. I cannot live without kids. I am always alone and I am not barren. If I have a child, I will take care of my child and I will be active. I can work because I know I have somebody to take care of. I will have a responsibility."
In Yaoundé, Cameroon, a third of 40 HIV-positive men and women responding to a questionnaire said that they had unprotected sex primarily because they wished to have a child or their partner objected to the use of a barrier method. (About half continued to be sexually active without revealing their HIV status to their sexual partners.4) And, a study among some 10,000 men and women in Rakai district, Uganda, who received HIV testing and counseling showed that, despite these services, HIV-positive women were no more likely than HIV-negative women to use female-controlled family planning methods. Condom use was moderately (but not significantly) higher among HIV-positive than HIV-negative men. A strong desire for children may have reduced HIV-infected respondents' acceptance of family planning methods, the study's authors concluded.5
That many HIV-infected women actively seek and continue pregnancies despite potential risks for their infants has been demonstrated in several U.S. studies, as well.6 In interviews with 82 HIV-positive U.S. women, awareness of HIV infection or knowledge that risk of mother-to-child HIV transmission can be decreased by prenatal zidovudine treatment did not significantly influence pregnancy planning, contraceptive choice or use, or consideration of induced abortion. Only 15 percent of respondents used condoms consistently. Only half used any form of contraception. About two-thirds of pregnancies were unplanned, but only 6 percent were terminated. Most women (70 percent) reported that their desire for a child was the most important reason for carrying the pregnancy to term.7
Reasons why many HIV-infected women do not contracept are abundant. Not only is motherhood a primary source of self-esteem for many women, but an HIV-infected woman may want to replace a child lost to AIDS.8 Pregnancy may provide hope for the future: A dying woman can console herself if she has healthy children to survive her.
The prospect of caring for a child may give an HIV-positive woman reason to go on living. Motherhood means "I do not have to dwell on my misfortune," said one of 11 HIV-positive women in a U.S. study in which participants learned both of their pregnancy and HIV infection before 24 weeks gestation. Three women terminated their pregnancies, but eight -- including this woman -- carried their pregnancies to term. "Keeping them [my children] healthy and happy keeps me alive," she said.9
Still other HIV-positive women may not be able to accept the seriousness of their diagnosis and, denying it, become pregnant. Other HIV-positive women may become pregnant to conceal their HIV status from relatives, especially in-laws.
Finally, some HIV-infected women using contraception believe the incorrect idea that HIV-related symptoms are a result of contraceptive use. In Family Planning Association of Kenya clinics, "HIV cases are guided through counseling to choose a contraceptive method that provides dual protection against both pregnancy and HIV transmission," says Sarah Kirowo, assistant program officer. "However, it is difficult to convince women who are HIV-infected that their ailments or symptoms have nothing to do with family planning methods. As a result, they tend not to use contraception."
Preventing pregnancy
Women who are HIV-positive may want to end childbearing for various reasons. Some are worried that pregnancy will further compromise their health. They are concerned about transmitting their infection to children they might conceive. They realize that, particularly without treatment, HIV infection will shorten their own lives, and they fear leaving orphans.
A 25-year-old, HIV-positive Kenyan housewife who suspects that her husband also is infected explained in an interview why she is contracepting with the injectable depot-medroxyprogesterone acetate (DMPA): "I feel the two children I have are enough. If I continue to give birth, I will have no energy to take care of those many children. If I get more children, maybe I will die and leave them suffering. Also, if my husband goes first and I be rendered a widow, I will have no way of taking care of them."
Some HIV-positive women, however, continue bearing children because they do not know how to stop. In the Zimbabwean study of 52 HIV-positive women -- 16 of whom became pregnant after diagnosis -- seven of nine women who reported unplanned pregnancies were married with children. Researchers concluded that "long-term married women, particularly in rural areas, often have no history of contraceptive use before they are affected by HIV. They may be ready to terminate childbearing, but often cannot put that decision into practice because they lack control over contraception and access to abortion."
To control contraception, women must be able to negotiate contraceptive use with their partners and have access to family planning services. However, some providers may limit or deny HIV-positive women's access to such services. For example, some 1,500 U.S. primary care physicians were found in a survey to be generally less willing to provide gynecologic, contraceptive or pregnancy-related care to HIV-infected women than to uninfected women.10
Even when family planning services are available, they may not address the needs of HIV-positive women. One reason is that HIV-positive women seldom reveal their HIV status to family planning providers, particularly if those providers do not ask. None of six HIV-positive women recently interviewed in Kenya had revealed their HIV status to family planning providers. One 32-year-old woman who tested positive for HIV in 1990 shared the test result with her husband. Although the couple already had two children, her husband wanted more due to pressure from family members. "He started insisting that I had to have a baby ... that there are some HIV people who are having healthy babies and that it was OK to take a risk," she said.
But finding the risks unacceptable and not knowing how to get drugs to reduce the risk of mother-to-child HIV transmission, the woman secretly began using DMPA, never telling providers that she was HIV-positive. "I did not tell them because medical practitioners are very difficult people," she explained. "They are the ones who really stigmatize people who are HIV-positive." Another mother of two interviewed by FHI described why she did not tell a family planning service provider that she was HIV-positive. "I never told her because I can never trust her," says the 21-year-old woman, who tested HIV-positive at age 14. "You know, these days, doctors -- if you tell them something like that -- will fear you, not give you services or might tell someone else you see."
Providers who are aware of a woman's HIV-positive status still may not offer adequate counseling about reproductive options. Most of 69 HIV-positive women in a U.S. study said they had access to methods to prevent conception and sexually transmitted infections (STIs), including HIV. But fewer than half felt that the family planning counseling they received was adequate.11 Most of 150 HIV-positive women seen at an HIV/AIDS clinic in São Paulo, Brazil, rated clinic services very highly. Yet, they lacked correct information about contraception, reproduction, and the reduced possibility of mother-to-child HIV transmission with use of antiretroviral drugs.12 Various African studies show that counseling HIV-positive women does not substantially increase contraceptive use, often because HIV-infected women -- fearing abandonment -- hide their status from their partners.13
Contraceptive options
HIV-infected women need to know that, aside from abstinence, condoms offer the best protection against STIs. Male or female condoms should be used every time intercourse occurs. This is to avoid HIV transmission to partners and to protect the woman herself from other STIs, including other strains of HIV.
An HIV-infected woman should be taught correct condom use and skills for negotiating condom use with her partner. Some women are determined to prevail in such negotiations, even when difficult. As a 46-year-old widowed mother of four in Kenya explains, "My husband passed away in 1990. ... There was a time in 1994 when I got another man, and he refused to use a condom. So the relationship could not go on." A 32-year-old Kenyan woman says that when a man refuses to use a condom "we go without sex."
If she does not wish to become pregnant, an HIV-positive woman should consider dual method protection -- using a condom for disease prevention and another, more effective method for contraception. Because some women erroneously believe that a method effective in preventing pregnancy also will be effective in preventing disease transmission, HIV-infected women must understand which methods are appropriate for pregnancy versus disease prevention.14
In typical use, diaphragms and cervical caps are associated with relatively high rates of pregnancy. Twenty percent of diaphragm users experience an unintended pregnancy within the first year of typical use. Twenty percent and 40 percent of nulliparous and parous cervical cap users, respectively, experience an unintended pregnancy during this time.15 But there are no medical restrictions on HIV-infected women's use of these methods.
For HIV-infected women who have decided against childbearing, female sterilization is a good option. The procedure should be delayed, however, if a woman has an AIDS-related illness. All hormonal contraceptive methods are good options for HIV-positive women (using the same clinical criteria as with HIV-negative women), even women who have developed AIDS.16Hormonal contraceptives tend to be more effective for preventing pregnancy than barrier methods. However, there is concern that sexual partners of HIV-positive women using more effective contraception may not use condoms as consistently as partners of women using less effective contraception.17 Also, there is some evidence that anti-retroviral drugs can reduce the effectiveness of oral contraceptives, thus requiring an adjustment in dosage or change to another contraceptive.18
Due to concerns about pelvic infection and increased blood loss, use of intrauterine devices (IUDs) by HIV-infected women is usually undesirable, according to World Health Organization (WHO) guidelines. However, recent research by the University of Nairobi and FHI suggests that the IUD can be safely used by appropriately selected, HIV-infected women with regular access to medical services.19 HIV-infected women can generally use the levonorgestrel intrauterine system, according to WHO.
The Lactational Amenorrhea Method, also known as LAM, is a temporary contraceptive option used for up to six months postpartum by women who are fully or nearly fully breastfeeding and continue to have no menses. However, HIV-positive women need to know that any children they bear may become infected with the virus during breastfeeding. The average risk of acquiring HIV infection through breastmilk is at least 16 percent.20 According to WHO, an HIV-positive mother can eliminate the risk of HIV transmission through breastmilk by using infant formula, modified animal milks or boiled expressed breastmilk. However, she must have access to a sufficient, ongoing and clean supply of this alternative form of milk. If there is no safe alternative form of milk, an HIV-positive mother should give her infant only breastmilk. Limiting breastfeeding to the first six months may also reduce the risk of HIV transmission.21
-- Maureen Kuyoh and Kim Best
Maureen Kuyoh, a senior project coordinator in FHI's Nairobi office, conducted interviews with HIV-positive women for this article.
References
Report on the Global HIV/AIDS Epidemic. Geneva: Joint United Nations Programme on HIV/AIDS, 2000.
Rutenberg N, Biddlecom A, Kaona F. Reproductive decision-making in the context of HIV and AIDS: a qualitative study in Ndola, Zambia. Int Fam Plann Perspect 2000;26(3):124-30.
Feldman R, Maposhere C. Voices and choices: a participatory research and advocacy study of reproductive health and rights of HIV positive women in Zimbabwe. The XIII International AIDS Conference, Durban, South Africa, July 9-14, 2000.
Atangana MJ. Sexual behavior of people living with HIV/AIDS in Yaoundé, Cameroon. The XIII International AIDS Conference, Durban, South Africa, July 9-14, 2000.
Lutalo T, Kidugavu M, Wawer M, et al. Contraceptive use and HIV testing and counseling in rural Rakai district, SW Uganda. The XIII International AIDS Conference, Durban, South Africa, July 9-14, 2000.
Barbacci M, Chaisson R, Anderson J, et al. Knowledge of HIV serostatus and pregnancy decisions, abstract no. MBP 10. Int Conf AIDS 1989;5:223; Wiznia A, Bueti C, Douglas C, et al. Factors influencing maternal decision-making regarding pregnancy outcome in HIV-infected women, abstract no. MBP 7. Int Conf AIDS 1989;5:223; Sunderland A, Minkoff HL, Handte J, et al. The impact of human immunodeficiency virus serostatus on reproductive decisions of women. Obstet Gynecol 1992;79(6):1027-31; Kline A, Strickler J, Kempf J. Factors associated with pregnancy and pregnancy resolution in HIV seropositive women. Soc Sci Med 1995;40(11):1539-47; Ahluwalia IB, DeVellis RF, Thomas JC. Reproductive decisions of women at risk for acquiring HIV infection. AIDS Educ Prev 1998;10(1):90-97.
Smits AK, Goergen CA, Delaney JA, et al. Contraceptive use and pregnancy decision-making among women with HIV. AIDS Patient Care STDS 1999;13(12):739-46.
Williams H, Watkins C, Risby J. Reproductive decision-making and determinants of contraceptive use in HIV-infected women. Clin Obst Gynecol 1996;39(2):333-43.
Hutchison M, Kurth A. "I need to know that I have a choice ..." a study of women, HIV, and reproductive decision-making. AIDS Patient Care 1991;5(1):17-25.
HIV prevention practices of primary-care physicians -- United States, 1992. MMWR 1994;42(51):988-92.
Duggan J, Walerius H, Purohit A, et al. Reproductive issues in HIV-seropositive women: a survey regarding counseling, contraception, safer sex, and pregnancy choices. J Assoc Nurses AIDS Care 1999;10(5):84-92.
Santos N, Ventura-Filipe E, Paiva V. HIV positive women, reproduction and sexuality in São Paulo, Brazil. Reprod Health Matters 1998;6(12):31-40.
Ryder RW, Batter VL, Nsuami M, et al. Fertility rates in 238 HIV-1 positive women in Zaire followed for 3 years post-partum. AIDS 1991;5(12):1521-27; Allen S, Semfilira A, Gruber V, et al. Pregnancy and contraceptive use among urban Rwandan women after testing and counselling. Am J Public Health 1993;83(5):705-10; Temmerman M, Chomba EN, Piot P. HIV-1 and reproductive health in Africa. Int J Gynecol Obstet 1994;44(2):107-12.
Galavotti C, Schnell J. Relationship between contraceptive method choice and beliefs about HIV and pregnancy prevention. Sex Transm Dis 1994;21(1):5-7.
Hatcher RA, Trussell J, Stewart F, et al., eds. Contraceptive Technology, Seventeenth Revised Edition. (New York: Ardent Media, Inc., 1998)800.
World Health Organization. Improving Access to Quality Care in Family Planning. Medical Eligibility Criteria for Contraceptive Use. Geneva: World Health Organization, 1996.
Díaz T, Schable B, Chu S, et al. Relationship between use of condoms and other forms of contraception among human immunodeficiency virus-infected women. Obstet Gynecol 1995;86(2):277-82.
Leitz G, Mildvan D, McDonough M, et al. Nevirapine (VIRAMUNE, NCP) and ethinyl estradiol/norethindrone (ORTHO-NOVUM 1/35 [21 pack] EE/NET) interaction study in HIV-1 infected women. The 7th Conference on Retroviruses and Opportunistic Infections. San Francisco, January 30-February 2, 2000; Piscitelli S, Flexner C, Minor J, et al. Drug interactions in patients infected with human immunodeficiency virus. Clin Infect Dis 1996;23(4):685-93.
Morrison C, Sekadde-Kigondu C, Sinei S, et al. Is the IUD appropriate contraception for HIV-infected women? Presentation at Thirteenth Meeting of the International Society for Sexually Transmitted Diseases Research, Denver, CO, July 11-14, 1999.
Nduati R, John G, Mbori-Ngacha D, et al. Effect of breastfeeding and formula feeding on transmission of HIV-1: a randomized clinical trial. JAMA 2000;283(9):1167-74.
De Cock KM, Fowler MG, Mercier E, et al. Prevention of mother-to-child HIV transmission in resource-poor countries: translating research into policy and practice. JAMA 2000;283(9):1175-82.
Anyone counseling women known or suspected to be HIV-positive should support the client's family planning decisions, even if the counselor disagrees with the client.1
For example, a counselor may believe that permanent contraception is the best option for an infected woman. Such personal beliefs should not influence counseling. A family planning provider should adopt a neutral attitude and give the following information to each HIV-infected client:
Her life expectancy.
Pregnancy does not appear to accelerate HIV progression, even among women not receiving antiretroviral therapy.2
An HIV-infected mother can transmit the virus to her child. Rates of mother-to-child HIV transmission in some developing countries exceed 40 percent.3
Although it may be too expensive in developing-world settings, preventive treatment can reduce HIV transmission risks during childbirth.
The implications of rearing an infected child, including the course of the child's infection and likelihood of premature death.
The kind of family or social support the HIV-positive woman can expect to receive. Given that without treatment the mother is likely to develop AIDS and die, will family members be available to raise motherless children?
-- Kim Best
References
Chervenak FA, McCullough LB. Common ethical dilemmas encountered in the management of HIV-infected women and newborns. Clin Obstet Gynecol 1996;39(2):411-9.
McIntyre J. HIV in Pregnancy: A Review (Geneva: World Health Organization/UNAIDS, 1999)7; Bessinger R, Clark R, Kissinger P, et al. Pregnancy is not associated with the progression of HIV disease in women attending an HIV outpatient program. Am J Epidemiol 1998;147(5):434-40; Immunological markers in HIV-infected pregnant women. The European Collaborative Study and the Swiss HIV Pregnancy Cohort. AIDS 1997;11(15):1859-65; Vimercati A, Greco P, Lopalco PL, et al. Immunological markers in HIV-infected pregnant and non-pregnant women. Eur J Obstet Gynecol Reprod Biol 2000;90(1):37-41.
The Working Group on Mother-to-Infant Transmission of HIV. Rates of mother-to-infant transmission of HIV-1 in Africa, America, and Europe: results from 13 perinatal studies. J Acquir Immune Defic Syndr Hum Retrovirol 1995;8(5):506-10
Fertility rates for HIV-infected women are lower than for uninfected women. There are several possible explanations.
In developed countries, where women tend to know their HIV status, many infected women may be abstaining from sexual relations, using contraception or having abortions to avoid giving birth to children who might sicken, die or be orphaned.1 But in sub-Saharan Africa -- where most women do not know their HIV status and seldom use contraception or have induced abortions -- fertility rates among infected women still remain lower than among healthy women.2
Some experts have suggested a direct, biological effect of HIV infection on conception and pregnancy. However, reduced fertility before HIV infection may account for much of the lowered fertility observed after infection.3 In a study in Uganda of 80 HIV-infected and 96 uninfected women, low pregnancy rates before HIV infection accounted for almost half of the reduced fertility observed after infection.4
-- Kim Best
References
Stephenson JM, Griffioen A, the Study Group for the Medical Research Council Collaborative Study of Women with HIV. The effect of HIV diagnosis on reproductive experience. AIDS 1996;10(14):1683-87; De Vincenzi I, Jadand C, Couturier E, et al. Pregnancy and contraception in a French cohort of HIV-infected women. AIDS 1997;11(3):333-38.
Gray R, Wawer M, Serwadda D, et al. Population-based study of fertility in women with HIV-1 infection in Uganda. Lancet 1998;351(9096):98-103; Ryder RW, Batter VL, Nsuami M, et al. Fertility rates in 238 HIV-1-seropositive women in Zaire followed for 3 years post-partum. AIDS 1991;5(12):1521-27; Sewankambo NK, Wawer MJ, Grey RH, et al. Demographic impact of HIV infection in rural Rakai District, Uganda: results of a population-based cohort study. AIDS 1994;8(12):1707-13.
Lee LM, Wortley PM, Gray RH, et al. Reduced fertility and duration of HIV-1 infection in American women, abstract no. 24198. Int Conf AIDS 1998;12:479-80.
Ross A, Morgan D, Lubega R, et al. Reduced fertility associated with HIV: the contribution of pre-existing subfertility. AIDS 1999;13(15):2133-41.
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