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of provider and consumer educational materials, including step-by-step protocols for each phase of the ZDV regimen and a guide for perinatal HIV counseling and testing.
Focus Group Findings
Various HRSA-supported focus groups have identified barriers to optimal reduction of perinatal HIV transmission. Clients have identified the following barriers to HIV counseling and testing: distrust of providers, concerns about confidentiality of test results, fear of discrimination, fear of losing custody of children, previous negative HIV test, and the perception of not being at risk. With regard to the use of ZDV, client-identified barriers include: concerns about effects of ZDV during pregnancy, mistrust of information from health care providers, judgmental responses from providers when women elect not to take ZDV, fear of providers pressuring women to take ZDV, fear of legal/social consequences of refusing ZDV, and lack of timely availability of ZDV. Systemic barriers identified include: lack of transportation, child care, awareness or understanding of resources, and linkages between providers; limited client knowledge; limited provider knowledge; and a sense of helplessness or hopelessness. Finally, barriers identified by providers include: lack of perceived risk among "private" patients, lack of time, lack of reimbursement for counseling time, and lack of knowledge or training.
Women's Initiative for HIV Care and Reduction of Perinatal Transmission
HRSA's WIN, which includes ten sites across the country, was developed in FY 1995 in response to ACTG 076 findings. WIN goals include encouraging women to learn their HIV status as early as possible, linking women with a continuum of ongoing comprehensive care services, and facilitating strategies that reduce perinatal HIV transmission. Very preliminary WIN data from 1997 client interviews and 1996 provider interviews, along with some medical chart reviews, provide some interesting information on a range of topics. All clients interviewed were HIV-positive and pregnant. On the issue of quality and content of HIV counseling, 72% of clients reported that they were aware the test was going to be done prior to being tested; 6% reported feeling forced to take the test; 56% of clients reported that they received post-test counseling, and of these, 53% felt it was non-directive/non-coercive; and nearly 75% felt counseling information was clear. Among WIN clients, the ZDV acceptance rate has been very high: 92% for prenatal use, 95% for intrapartum use, and 94% for the use in neonatal period. About three-fourths of respondents said they had been counseled about not breast-feeding their babies; however, none of the WIN mothers did breast-feed.