A Multilevel Assessment of PrEP-Related Stigma Among Black Individuals In the Alabama and Mississippi

Background: Gay, bisexual, and other men who have sex with men (GBMSM), and Black women in the Deep South have disproportionately higher rates of HIV acquisition and lower rates of PrEP use. Research shows stigma is a barrier to engagement in HIV treatment and prevention. However, few studies have examined the potential relationship between stigma and PrEP uptake and adherence in GBMSM and Black women living in the Blackbelt and Wiregrass regions of Alabama and in Eastern Mississippi. Further, most studies on stigma and PrEP use have neither grounded their definition of stigma in theory, nor provided a concise definition of stigma. The current study aimed to address these gaps.

Theoretical Framework: Data for this study were drawn from a larger study that was guided by the exploration phase of the Dynamic Adaptation Process (DAP), which involves assessment at four levels: system, organization, provider, and client. We operationalized stigma using Link and Phelan’s seminal theory, which explicates the perpetration of stigma as labeling that a) links a person to undesirable characteristics and stereotyping b) leads to a separation between “us” and “them”, and c) leads to status loss and discrimination. By using both frameworks to guide our study, we were able to explore stigma at each level from the DAP.

Methods: Virtual semi-structured interviews were conducted with a purposive sample of 28 current and former GBMSM and Black women PrEP users in Alabama and Eastern Mississippi. Interviews focused on barriers and facilitators of PrEP use. Interviews were recorded and transcribed. Deductive, open coding was conducted based on participant statements about stigma. Next, a conceptual cluster matrix was created that included quotations organized by the four levels of the DAP and the sources and experiences of stigma.

Results:System, organization, and provider levels were all discussed as sources of stigma. System level sources included the requirement of HIV testing to receive PrEP, and the possibility of being put into a state database if the test results were positive. Lack of regional awareness and education about PrEP caused some users to fear being labeled as having a “sexual disease.” Lastly, religious and political conservativism in the region and parental conservativism were a source of stigma.

At the organization level, the main source of stigma involved being seen at the facility itself, one’s car being seen in the parking lot, being seen in the waiting room, or doing the “walk of shame.”

At the provider level, lack of representation (“not having someone that looks like me”), personal biases of the provider, and unknowledgeable providers (on taking Descovy “oh, so you have HIV”) emerged as sources of stigma.

Conclusions: Participants widely discussed stigma as a factor in their PrEP decisions, including whether to initiate and/or sustain PrEP use, and its effect on their well-being. By far the most common reaction to stigma was the fear of disclosure, which could lead to a label of having HIV or other STIs or being promiscuous. Advancing PrEP in these communities necessitates stigma reduction efforts across multiple levels.