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PWH Internalized Stigma High Rates, 36%-48%
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Differences in internalized HIV stigma (IHS) across subpopulations of people living with HIV in care across the US
February 12, 2024
Approximately 1/3 (30.9%) of PWH neither agreed nor disagreed with at least one of the four IHS questions at their baseline assessment and 16% agreed.
Intersectional stigma is important among people with HIV (PWH) [14], and while enacted HIV and other stigmas are frequently observable, the impact on internalized HIV stigma (IHS), in particular, among subpopulations of PWH has been understudied. Intersectionality is now recognized as critical to ending the HIV epidemic, as well as addressing other public health priorities.
What is intersectional stigma?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9241457/
Our findings provide insight into overall and differential burden of IHS among PWH, which is critical for supporting policies on measuring IHS among PWH, establishing the need for future studies on IHS among PWH, and informing IHS interventions. Through better understanding IHS burden, subpopulation needs, and the impact of IHS among PWH, we can work toward personalizing care and developing interventions that have greater impact due to tailoring to specific subpopulations concerns and needs.
The modern concept of stigma was defined by Erving Goffman as the reduction "in our minds from a whole and usual person to a tainted, discounted one"; wherein he describes both concepts of others' beliefs vs. self-belief and hidden vs. overt attributes with respect to stigma [1].These concepts gave rise to common classifications of stigma today including; enacted, i.e., unfair or stigmatizing treatment from others [2]; perceived, i.e., what one believes are others' attitudes about a stigma [3], which can further translate into the fear of being stigmatized [4]; anticipated, i.e., the belief that one will be stigmatized by others [5]; and internalized, sometimes referred to as "felt stigma" [2] or "self-stigma" [3], which is the belief one has about oneself with respect to a stigma [6].
A growing body of literature demonstrates that all types of stigma can negatively impact health outcomes across a range of health measures [7, 8], including HIV-related stigma and health outcomes, such as depression, unsuppressed HIV viral load, continuity of care, and others [9, 10]. The processes by which stigmas can impact health outcomes have been theorized to be diverse and multifactorial, including potential mediating pathways [11], and are further compounded by intersectional stigma, or belonging to more than one stigmatized group [12, 13].
RESULTS
Approximately 1/3 (30.9%) of PWH neither agreed nor disagreed with at least one of the four IHS questions at their baseline assessment and 16% agreed.
While some subpopulations clearly had a higher burden of IHS than others, it is important to note that every subpopulation included PWH who did not reject or disagree with at least one IHS statement.
Table 3 shows the proportion of PWH who did not disagree with a given question by subpopulation characteristics at baseline. PWH most frequently failed to disagree (41.3%) with the statement, "I feel ashamed of having HIV", with >36% of PWH from every subpopulation failing to reject this statement.
Close to one-third of PWH (31.2%) did not reject the statement, "I think less of myself because I have HIV", with the lowest proportion among PWH >59 years old (22.0%). The statement, "Having HIV is disgusting to me" was not rejected by 28.2% of PWH and was also least rejected by PWH who were >59 years old (22.8%). Even with the least frequently supported statement, "Having HIV makes me feel like I am a bad person", most subpopulations had at least 20% of people who did not reject this statement.
In addition, across all groups at baseline, the highest score on any given question was a 5 or "Strongly Agree" for 1,143 (9.1%) PWH, a 4 or "Agree" for 2,701 (21.5%) PWH, 3 or "Neither agree nor disagree" for 2,054 (16.4%) PWH, 2 or "Disagree" for 2,098 (16.7%) PWH, and 1 or "Strongly Disagree" for the remaining 4,569 PWH (36.4%) (supplemental figure 2, http://links.lww.com/QAD/D124), demonstrating that a high proportion of PWH in care endorsed at least one question.
12,656 PWH completed the IHS assessment at least once from February 2016 to November 2022, providing 28,559 IHS assessments. At baseline IHS assessment, the mean age was 49 years, 41% reported White, 38% Black/African American, and 16% Latine race/ethnicity, and 80% were cisgender men. The mean IHS score was 2.04, with all subgroups represented among those endorsing IHS. In regression analyses, younger PWH and those in care fewer years had higher IHS scores. In addition, cisgender women vs. cisgender men, PWH residing in the West vs. the Southeast, and those with sexual identities other than gay/lesbian had higher IHS scores. Compared with White-identifying PWH, those who identified with Black/African American or Latine race/ethnicity had lower IHS scores. Age stratification revealed patterns related to age category, including specific age-related differences by gender, geographic region and race/ethnicity.
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