| The Human Immunodeficiency Virus (HIV) epidemic now into a fourth decade has significantly impacted millions of people worldwide. In the United States (US), African American (AA) women have been overrepresented throughout the epidemic. Increasingly, women represent more of the new cases of HIV, with AA women accounting for over half of all infections. They have higher rates of mortality from the disease, worse side effect profiles, and there is a lack of evidence on why. Yet AA HIV+ women continued to be underrepresented in HIV medication trials, with current enrollment rates as low as 5%, far lower than their share of the epidemic.;This qualitative research study explored the lived experience of 20 AA HIV+ women in Massachusetts who have been offered an opportunity to participate in HIV medication trials, both women who enrolled and those who did not; and the lived experience of 10 health care providers who offered their AA HIV+ women patients the opportunity to enroll in these trials. Decisions made by patient-provider teams are influenced by several domains including patient preferences, historical memory, perception of need, and the health care relationship.;A model of evidence-based practice in clinical care calls for us to consider the experiences that patients bring to the health care encounter, the HIV clinical knowledge and evidence underlying the provider decision about offering enrollment or not, and the balance of power in the relationship (Satterfield et al., 2009). The study's semi-structured interviews encouraged patients and providers to explore these topics, recall experiences, tell stories, and share emotions (Mishler, 1986/1991). Thematic analysis was used to categorize the interview data and select longer passages that took a storied form for deeper content analysis to understand these themes from the perspectives of both patients and providers (Braun & Clarke, 2006; Denzin & Lincoln, 2000; Williams, 1984), in dialogue with the lived experience of the researcher as an HIV provider for more than 33 years (Riessman, 2008).;Four themes appeared most often in the 30 patient and provider interviews conducted: stigma, fear, trust and relationships. In both the "yes" to enroll and the "no" to enroll groups, stigma was discussed by 90% of AA HIV+ women participants, and by 70% of providers. Some women reported feeling stigmatized even in care provided through research. Fear was multilayered and encompassed fear of side effects as well as a change in location of HIV care mandated by enrollment. Women who spoke of trusting and having a good relationship with their provider were more likely to enroll in HIV medication trials. It was the intersection of several of these factors that often determined the ultimate decision regarding enrollment. Providers who took action to reduce stigma in the health setting were more successful with enrollment. Study findings suggest expanding the currently mandated HIV care continuum, to include attention to enrollment in research at the site of primary care, which, given the established trust and relationships among patients and providers in this setting, would result in generating the evidence-base of medication effectiveness for these women and improve the quality of care provided. Greater enrollment rates have potential to help AA HIV+ women achieve gains similar to other HIV+ populations: reduce their mortality rates from HIV, reduce their side effect burden, and improve their overall health and wellbeing. Study narratives reinforce the notion that patient-centered care and strong patient-provider relationships are keys to successful outcomes in HIV care and research. The findings have particular significance for care provided through the primary care medical home, where most AA HIV+ women receive their care, and where the care continuum increasingly guides decision-making at system, organizational, and individual levels. |
