Attitudes toward and beliefs about prenatal HIV testing policies and mandatory HIV testing of newborns among drug users.

Background: Controversy remains about perinatal HIV testing in many clinical settings. We sought to examine the attitudes and health beliefs among drug users about mandatory HIV testing of newborns and about voluntary versus mandatory testing of pregnant women. We also examined to what extent negative experiences and stigmatization affected attitudes toward HIV testing.

Methods: To establish a baseline, we examined 610 structured interviews conducted from 1997 to 2001, of active drug users who were recruited using respondent-driven sampling. We then conducted five focus groups of five subjects per group to further analyze responses in September 2003. The responses of the members of the focus groups were transcribed, coded, and analyzed using Microsoft Word 2000.

Results: Quantitative Longitudinal Cohort Studies. Of the 610 drug users interviewed in the two longitudinal cohort studies conducted from 1997 to 2001, nearly all (89 percent) had been previously tested for HIV Nearly all subjects (91 percent) believed that pregnant women should be tested for HIV. More subjects who had prior HIV testing believed all pregnant women should be tested for HIV (92.9 percent versus 82.6 percent, p = 0.008). Although 86 percent of the subjects agreed that all newborns should be tested, only 57 percent of all of the subjects believed that it should be mandatory. Among the female subjects, however, more injectors than non-injectors would avoid prenatal care if HIV testing was required during pregnancy (16.2 percent versus 6.1 percent, p < 0.01). Of the 499 subjects who reported that they had a usual site for care, 31.8 percent believed that "certain types of people" received better treatment than others. Not using drugs, being of a certain race/ethnicity, and having private insurance were associated with receiving better care. The majority of subjects believed that being a drug user resulted in receiving suboptimal care from the healthcare establishment. Qualitative Focus Group Study. In the focus groups, arguments against mandatory testing of pregnant women included the loss of choice, the right not to know one's HIV status, and the belief that mandatory testing was both a means of provoking rebellion and promoting discrimination. Concern for a baby's health was the primary reason for supporting mandatory testing. Perceived discrimination by the healthcare system was cited as a barrier to acceptance of testing strategies, as it was in the structured interviews.

Conclusions: The current practice of mandatory newborn and voluntary prenatal screening for HIV in the State of Connecticut appears to have been acceptable to a population of highly stigmatized drug users who have been or were at risk for HIV. Despite this acceptance, perceived discrimination by the healthcare system persists and may result in adverse outcomes for a minority of high-risk women, particularly where drug misuse is more highly stigmatized.