Measuring Pre-Exposure Prophylaxis (PrEP) Stigma Among Adolescent Girls and Young Women in Western Kenya: Scale Development,Validation,and Associations with PrEP Adherence

Abstract

Qualitative studies suggest stigma is a barrier to pre-exposure prophylaxis (PrEP) adherence among adolescent girls and young women (AGYW) in sub-Saharan Africa, but there are few quantitative data or validated measures available. This study sought to develop and validate a scale to measure PrEP stigma among AGYW in western Kenya. An initial scale was developed, then pilot tested with 200 AGYW taking PrEP. The final scale was used in a longitudinal study with 250 AGYW to assess the prevalence and sources of PrEP stigma and to test whether PrEP stigma is associated with PrEP adherence, measured by hair tenofovir levels. The pilot testing resulted in the final 17-item Young Women’s PrEP Stigma Scale (YW-PSS) with subscales for perceived, anticipated, experienced, and internalized PrEP stigma, high internal consistency (Cronbach’s alpha = 0.81), and evidence of divergent and construct validity. In the longitudinal study, 72% of participants reported any perceived PrEP stigma, 64% any anticipated stigma, 35% any experienced stigma, and 15% any internalized stigma. The most commonly reported stigma perpetrators were friends, male partners, and men and women from the community. Participants with higher total, perceived, or experienced PrEP stigma scores were significantly less likely to have high PrEP adherence, while anticipated and internalized stigma were not associated with PrEP adherence. Findings from this study support the validity and reliability of the YW-PSS among AGYW in Kenya and suggest that PrEP stigma is highly prevalent and predicts poor PrEP adherence. Stigma reduction interventions are needed to support PrEP adherence and well-being in this population.