A review of measures used to assess HIV-related stigma among young people living with HIV: missing accounts of sex and gender

Most studies of HIV-related stigma focus on adult populations. This study reviews empirical studies that measure HIV-related stigma among young people living with HIV (YLHIV). Using Earnshaw and Chaudoir’s (2009) framework, studies that assessed, enacted, internalized, perceived and anticipated stigma were coded and then evaluated on their use of sex or gender according to the following criteria: (i) recruiting equal number of young men and women; (ii) asking some questions/subsections of young men/women only; (iii) treating sex/gender as a covariate, or stratifying by or controlling for sex/gender; (iv) acknowledging the importance of sex/gender considerations in the discussion. Of the 2272 abstracts initially screened, 27 papers were eligible for analysis. While several studies (n = 12) measured all four types of stigma, four measured anticipated and internalized stigma and one measured perceived and internalized stigma. Moreover, two measured perceived and enacted stigma and two others measured only enacted stigma. Two studies measured only perceived stigma, and two assessed only internalized stigma. Most (n = 15) studies did not account for sex- or gender-based differences regarding HIV-related stigma and 10 did not report on participants’ sexual orientation. Of the 19 studies that included both male and female YLHIV, 6 did not account for sex/gender in their analyses. Very few (n = 6) studies reported on transgender YLHIV. Overall, a limited amount of HIV-related stigma research involved young people, despite the fact that this population experiences over 40% of annual incident rates globally. Additionally, overlooking sex- and gender-based differences is concerning given the evidence on gender differences regarding perceived HIV stigma and social rejection, discrimination, shame and psychological distress. Gender-specific stigma should be considered in future studies. A failure to do so leaves open the possibility of missing (or misunderstanding) relevant considerations (e.g. sex/gender-based differences or similarities) that may be amenable to stigma-reduction interventions.