November 10, 2021
By Lauren Richey, MD, MPH, FIDSA
Stigma remains a significant burden for people with HIV (PWH), particularly in the South where the majority of new cases of HIV occur in the U.S. The authors of a recent article in AIDS and Behavior conducted a mixed-methods study, which included qualitative and quantitative data collected from PWH and health care workers (HCWs) recruited from clinics outside major urban areas in the South during 2018 and 2019. PWH and HCWs were recruited via a flyer and word-of-mouth in participating clinics. Qualitative data from focus groups were analyzed with a coding framework to create a thematic analysis. Quantitative data from a survey were analyzed using SPSS statistical software and logistic regression. There were over 950 participants in the survey and 100 in the focus groups.
The PWH were mostly male (61%), black (62%), and between the ages of 25 and 54 (70%). Four major themes emerged. The first was HIV-related stigma and discrimination in health care settings. HIV health care settings were described as safe spaces, but PWH described discrimination in other settings: inpatient, dental clinics, and other non-HIV providers. On average the PWH reported 1.3 experiences of HIV-related stigma in a health care setting in the past 12 months. The second theme was intersectional stigma, which included stigma from sexual orientation, gender, or economic situation in the health care setting. In this study, 51% of the PWH reported HIV-related discrimination, and 61% reported more than one type of discrimination. The third theme was concerns of HIV disclosure as well as disclosure of intersecting identities such as sexual orientation. Seventeen percent of the PWH reported unwanted serostatus disclosure in the past year. Nine percent of HCWs reported observing an unwanted disclosure in the past year. The last theme was the impact of stigma in health care settings on HIV-related health behavior. Enacted stigma was significantly associated with suboptimal antiretroviral therapy adherence.
The authors conclude that while stigma was not frequent, the qualitative analysis shows that stigma experiences can be very memorable and damaging. Interventions and education to reduce and eliminate stigma are urgently needed and must include nonmedical staff at health care facilities, including administrative staff and reception, as well as non-HIV providers, including dentists and other specialists. Stigma needs to be addressed to reduce barriers to engagement and antiretroviral therapy adherence in order to end the epidemic.