Understanding and supporting HIV-infected women's awareness of their own status and their options regarding pregnancy requires an understanding of their backgrounds and the potential barriers to care and safe pregnancy. Studies have shown that both social pressures and concerns for vertical transmission play a large role in HIV-infected women's choices about pregnancy [1
]. Information from around the world supports the fact that since the introduction of reliable methods for the prevention of mother-to-child transmission (PMTCT), fewer HIV-infected women are choosing terminations and many are choosing to become pregnant, even to have multiple pregnancies, after their HIV diagnosis [2
Options for safe conception, especially in serodiscordant couples, now include artificial insemination and “sperm washing” [7
]. These methods, even where they are available, however, remain relatively unknown and infrequently recommended by many healthcare providers, even in developed countries [8
] and may be prohibitively expensive or inaccessible for some couples. In addition to these planned pregnancies, a large number of pregnancies remain unplanned [9
]. Women who live in developing countries, where safer methods of conception are relatively unknown or unavailable, are nevertheless choosing to become pregnant after their HIV diagnosis. A survey of 459 HIV-infected men and women in Cape Town, South Africa found that two-thirds of women, who became pregnant after commencing highly active antiretroviral therapy (HAART), had intended to become pregnant [11
]. Furthermore, 50% of HIV-infected men and women were open to the possibility of conceiving children after their HIV diagnosis; being on HAART had no significant impact on whether or not men intended to pursue pregnancy, but did make women more likely to consider pregnancy [11
]. It is unclear what impact moving from a developing to a developed country may have on childbearing intentions, but it is possible that this change in their socioeconomic environment and perceived options for care and support may play a role in women's childbearing intentions.
Women in the USA, who are HIV-infected and foreign-born, may have additional issues to consider during pregnancy. They are more likely to have language, educational, and economic barriers to care and to exercising their options, but may be even more likely to choose to keep a pregnancy because of cultural emphasis on childbearing and negative views of termination. Women who are born in areas of the world where fertility rates are between 5 and 7 children per woman, especially Africa and parts of South and Southeast Asia [12
], may experience particular spousal and familial pressure to become pregnant, even if they have disclosed their HIV status [13
]. A cross-sectional study done in Canada revealed that 69% of 490 HIV-infected women desired future pregnancy and African ethnicity was significantly correlated with intention to become pregnant [15
Although foreign-born persons with HIV living in the US appear to be a growing proportion of the HIV-infected population [16
], current national sociodemographic data do not accurately reflect this demographic, as they are generally listed under their ethnicity without distinction about place of birth [17
]. Thus, persons who are originally from Sub-Saharan Africa, where the highest number of HIV-infected individuals exists, are listed as black/African-American in data used for determining funding and resource allocation. African-born persons often live within their own communities and may not be reached by programs that target African-Americans [19
]. In Washington state, for example, the HIV diagnosis rate among blacks in the state is five times higher than the rate among whites, and 40% of all HIV diagnoses among blacks in Washington state have been among foreign-born persons [21
]. Similar data collected from five different states and high-prevalence areas show that across all areas, up to 41% of diagnoses in women and up to 50% of diagnoses in blacks occurred among African-born individuals [16
]. Additionally, we should not presume all foreign-born persons were necessarily infected with HIV prior to arrival in the USA. Data suggest that in some parts of the country, especially those parts with high numbers of Hispanic immigrants, patients are more likely to have been infected after arrival [22
], which may indicate increased vulnerability among foreign-born persons.
Unfortunately, the complex social issues that contribute to women becoming HIV-infected often present barriers to adherence with prescribed medication regimens and prenatal followup, as well as with ensuring adequate testing and followup of the HIV-exposed infant. Studies have shown that 45% of mothers of HIV-infected infants had missed opportunities for perinatal HIV prevention [23
], indicating that although appropriate protocols are in place, additional factors contribute to transmission.
Rhode Island, the smallest state in the United States, had an HIV prevalence of 209 per 100,000 population by the end of 2009 [24
]. Among the general population, 81% of persons identified themselves as White, 12% identified themselves as Hispanic, and 6% identified themselves as black or African-American [25
]. Amongst the 3,080 HIV-infected persons who have been diagnosed in Rhode Island since 1982, 54% identified themselves as White, 26% identified themselves as African-American, and 19% identified themselves as Hispanic [25
]. Thus, 45% of HIV cases in the state have occurred in the 18% of the population identified as Hispanic or African-American. No data is available on the percentage of HIV-infected persons in the state who are immigrants or foreign-born.
Following the lead of several other states, Rhode Island adopted a law mandating testing of pregnant women during pregnancy or their children immediately after birth. This was done in order to ensure that children receive medication to prevent mother-to-child transmission in a timely manner, and that women are appropriately identified if they need HIV-related services [26
]. This law has already led to increased rates of HIV testing during pregnancy, from 52.8% in 2005-2006 to greater than 95% after the law changed in 2007 [27
], but it is unclear if it has led to an increased number of HIV diagnoses. We seek to describe the experiences of HIV-infected pregnant women and their children followed at a large HIV clinic in Rhode Island.