The People Living with HIV Stigma Index 2.0: generating critical evidence for change worldwide

To describe the process of updating the People Living with HIV (PLHIV) Stigma Index (Stigma Index) to reflect current global treatment guidelines and to better measure intersecting stigmas and resilience.

Through an iterative process driven by PLHIV, the Stigma Index was revised, pretested, and formally evaluated in three cross-sectional studies.

Between March and October 2017, 1153 surveys (n = 377, Cameroon; n = 390, Senegal; n = 391, Uganda) were conducted with PLHIV at least 18 years old who had known their status for at least 1 year. PLHIV interviewers administered the survey on tablet computers or mobile phones to a diverse group of purposively sampled respondents recruited through PLHIV networks, community-based organizations, HIV clinics, and snowball sampling. Sixty respondents participated in cognitive interviews (20 per country) to assess if questions were understood as intended, and eight focus groups (Uganda only) assessed relevance of the survey, overall.

The Stigma Index 2.0 performed well and was relevant to PLHIV in all three countries. HIV-related stigma was experienced by more than one-third of respondents, including in HIV care settings. High rates of stigma experienced by key populations (such as MSM and sex workers) impeded access to HIV services. Many PLHIV also demonstrated resilience per the new PLHIV Resilience Scale.

The Stigma Index 2.0 is now more relevant to the current context of the HIV/AIDS epidemic and response. Results will be critical for addressing gaps in program design and policies that must be overcome to support PLHIV engaging in services, adhering to antiretroviral therapy, being virally suppressed, and leading healthy, stigma-free lives.