Living in Fear: Severe HIV-Associated Stigma Persists in Senegal, West Africa

Dedicated studies to understand and explore HIV-related stigma among PWH in Senegal are essential for the development and implementation of effective stigma reduction strategies. The goals of this study were to understand the current challenges confronted by newly diagnosed PWH in Senegal and to explore the manifestations of HIV-related stigma using a mixed methods approach. We conducted a convergent mixed methods study among participants ≥ 18 years of age, newly diagnosed with HIV and enrolled in the IeDEA West Africa NEWDiag cohort in Dakar, Senegal. A subset of individuals who had been diagnosed with HIV within the preceding 12 months participated in in-depth interviews. For the quantitative strand, sociodemographic data were collected using a structured questionnaire, clinical data were captured using chart review, and HIV-related stigma was assessed using the 12-item HIV Stigma Scale. Multivariable linear regressions were used to evaluate the associations between sociodemographic and clinical characteristics and HIV-related stigma. Qualitative data collection and analysis were guided by the Classic Grounded Theory approach, which included the use of theoretical sampling and the constant comparative method. Among 107 individuals enrolled in the quantitative strand, 49 (46%) were female. The median HIV-related stigma score was 29 (IQR 23-33); 65% experienced personalized stigma, 100% experienced disclosure concerns, 73% reported concerns with public attitudes, and 61% reported negative self-image. In the multivariable linear regression model, time elapsed since HIV diagnosis was associated with higher stigma scores (β: 0.22; 95% CI 0.06-1.60) and any amount of formal education was protective (β: - 0.21; 95% CI - 10.15 to - 0.20). In-depth interviews were conducted with 23 participants of which 10 (43.5%) were women. The core concept that emerged from the qualitative strand was "living in fear". Living with HIV involves living with ongoing and pervasive fear, including fear of death, fear of infecting others, and fear of rejection as a result of one's HIV status. This fear exists within a societal context characterized by profoundly negative perceptions regarding the morality of PWH and a lack of understanding regarding the transmission and treatment of HIV, which leads to the rejection, isolation, and avoidance of PWH. The perceived moral implications associated with contracting HIV can contribute to feelings of extreme shame, loss of self-worth, and suicidality. The strategy employed by PWH to minimize the risk of rejection is "status-concealing", which is the active effort to conceal one's HIV status. Attending HIV clinic appointments and taking ART may act as stimuli that contribute to the re-experiencing of the initial trauma of learning one's HIV diagnosis. HIV continues to be highly stigmatized in Senegal. Newly diagnosed PWH live with a pervasive fear that they will be rejected if their HIV status is disclosed and they employ numerous strategies to conceal their status. Future research is needed to develop, evaluate, and implement interventions to reduce HIV-related stigma in the region.