‘They Say HIV is a Punishment from God or from Ancestors’: Cross-Cultural Adaptation and Psychometric Assessment of an HIV Stigma Scale for South African Adolescents Living with HIV (ALHIV-SS)

Abstract

Sub-Saharan Africa is home to 90 % of the world’s adolescents living with HIV (ALHIV). HIV-stigma and the resultant fear of being identified as HIV-positive can compromise the survival of these youth by undermining anti-retroviral treatment initiation and adherence. To date, no HIV-stigma measures have been validated for use with ALHIV in Sub-Saharan Africa. This paper reports on a two-stage study in the Eastern Cape, South Africa. Firstly, we conducted a cross-cultural adaptation of an HIV stigma scale, previously used with US ALHIV. One-on-one semi-structured cognitive interviews were conducted with 9 urban and rural ALHIV. Three main themes emerged: 1) participants spoke about experiences of HIV stigma specific to a Southern African context, such as anticipating stigma from community members due to ‘punishment from God or ancestors’; 2) participants’ responses uncovered discrepancies between what the items intended to capture and how they understood them and 3) participants’ interpretation of wording uncovered redundant items. Items were revised or removed in consultation with participants. Secondly, we psychometrically assessed and validated this adapted ALHIV stigma scale (ALHIV-SS). We used total population sampling in 53 public healthcare facilities with community tracing. 721 ALHIV who were fully aware of their status were identified and interviewed for the psychometric assessment. Confirmatory factor analysis confirmed a 3-factor structure of enacted, anticipated and internalized stigma. The removal of 3 items resulted in a significant improvement in model fit (Chi 2 (df) = 189.83 (33), p < .001) and the restricted model fitted the data well (RMSEA = .017; CFI/TLI = .985/.980; SRMR = .032). Standardized factor loadings of indicators onto the latent variable were acceptable for all three measures (.41–.96). Concurrent criterion validity confirmed hypothesized relationships. Enacted stigma was associated with higher AIDS symptomatology (r = .146, p < .01) and depression (r = .092, p < .01). Internalized stigma was correlated with higher depression (r = .340, p < .01), higher AIDS symptomatology (r = .228, p < .01) and low social support (r = −.265, p < .01). Anticipated stigma was associated with higher depression (r = .203, p < .01) and lower social support (r = −.142, p < .01). The resulting ALHIV-SS has 10 items capturing all three HIV stigma mechanisms experienced by ALHIV. ALHIV-SS will be valuable for evaluating rates and types of stigma, as well as effectiveness of stigma-reduction interventions among ALHIV in Southern Africa.

Scaling a waterfall: a meta‐ethnography of adolescent progression through the stages of HIV care in sub‐Saharan Africa

“…The power of such anticipated stigma to negatively affect adolescent care engagement in SSA cannot be overstated, particularly as it compounds the hardships that many ALHIV have already gone through following early parental loss and learning their own positive HIV status. This appears distinct from the dominant manifestations of stigma amongst adults living with HIV in SSA [71,72]. The stigma experienced by many adults living with HIV is inextricably linked to blame or promiscuity [51,73].…”

Multiple forms of discrimination and internalized stigma compromise retention in HIV care among adolescents: findings from a South African cohort

“…Discrimination: Three different types of discrimination were measured, all using adolescent self‐report for the past year: 1 – discrimination due to the adolescent’s HIV status measured via discrimination items from the validated adolescents living with HIV stigma scale, which included items on being teased or losing friends due to HIV [16]; 2 – discrimination due to a family member’s HIV status measured via the standardized stigma‐by‐association scale, which included items about having been gossiped about or treated badly due to a family member’s HIV status [33] and 3 – discrimination in healthcare settings measured through a question about frequency of being shouted at by a healthcare provider [3]. A ‘ discrimination multiplicity’ variable was additionally computed to denote the number of different types of discrimination experienced.…”

“…Internalized stigma was measured through five items from the adolescents living with HIV stigma scale, including items on feeling ashamed or different from other young people due to HIV [16]. Response options ranging from 0 (never) to 2 (most of the time) were summed into a scale variable.…”

“…Being a target of discrimination can lead to internalized stigma [11], which occurs when adolescents internalize stigmatizing characterizations of people living HIV and accept them as applicable to themselves [12]. Internalized stigma evokes feelings of shame, guilt, helplessness and, in some cases, suicidal ideation [10,13‐16]. A national survey of more than 10,000 people living with HIV in South Africa found that 36% reported experiencing discrimination and 43% reported experiencing internalized HIV stigma in the past year.…”

“…Qualitative evidence on adolescent HIV and the broader literature on adolescent development suggests that HIV‐related discrimination and internalized shame act as profound barriers to engagement with health services among young people living with HIV [10,15‐16,18,19]. Adolescence is a time when self‐conceptions develop [20].…”