Mothers on the margins: implications for eradicating perinatal HIV

Tactics aimed at reducing perinatal transmission of HIV are proving ineffective at accomplishing complete eradication: a group of women with HIV remain at very high risk for transmitting the virus to their newborns. This study engaged a uniquely high-risk group of HIV-infected mothers as expert informants on childbearing with HIV to inform strategies to eradicate perinatal HIV transmission. The sample draws from an Illinois Department of Children and Family Services (DCFS) database of 1104 HIV-seropositive women with children in protective services between 1989 and 2001. Of these, 32 women knew their HIV-positive status and gave birth to at least two children after 1997 (zidovudine widely implemented as standard of care). Twelve were accessible and consented to participate. Three others, currently pregnant, also participated. Fifteen interviews were completed. The 15 women had given birth to 78 children (9 HIV-infected), fathered by 62 men. Respondents were severely socioeconomically marginalized. They were aware of their HIV status and the benefits of prophylaxis, most desired healthy babies to parent, and most delivered their babies in hospitals equipped to provide adequate prophylaxis. Yet most received inadequate or no prenatal care and did not disclose their HIV status at delivery. Women indicated that denial and substance use were the primary intrinsic barriers and disrespectful treatment was the primary extrinsic barrier to disclosure and care. Women's recommendations about eradication of perinatal HIV transmission emphasized the problem of substance use, the need for private and thorough communication with medical and DCFS personnel, and the need for positive social relationships to enable HIV positive mothers to engage in care. Attention to potent social and institutional barriers that impair the ability of the most marginalized women to disclose their HIV status and accept care is essential to realize eradication of perinatal transmission.