Stigma, activism, and well-being among people living with HIV

Abstract

Evidence demonstrates that HIV stigma undermines the psychological and physical health of people living with HIV (PLWH). Yet, PLWH describe engaging in HIV activism to challenge stigma, and research suggests that individuals may benefit from activism. We examine associations between experiences of HIV stigma and HIV activism, and test whether HIV activists benefit from greater well-being than non-activists. Participants include 93 PLWH recruited from drop-in centers, housing programs, and other organizations providing services to PLWH in the Northeastern U.S. between 2012 and 2013 (mean age=50 years; 56% Black, 20% White, 18% Other; 61% non-Latino(a), 39% Latino(a); 59% male, 38% female, 3% transgender; 82% heterosexual, 15% sexual minority). Participants completed a cross-sectional written survey. Results of regression analyses suggest that PLWH who experienced greater enacted stigma engaged in greater HIV activism. Anticipated, internalized, and perceived public stigma, however, were unrelated to HIV activism. Moreover, results of a multivariate analysis of variance suggest that HIV activists reported greater social network integration, greater social well-being, greater engagement in active coping with discrimination, and greater meaning in life than non-activists. Yet, HIV activists also reported somewhat greater depressive symptoms than non-activists, suggesting that the association between HIV activism and well-being is complex. By differentiating between HIV stigma mechanisms, the current study provides a more nuanced understanding of which experiences of HIV stigma may be associated with HIV activism. It further suggests that engagement in activism may offer benefits to PLWH, while raising the possibility that activists could experience greater depressive symptoms than non-activists. Given the preliminary nature of this study, future research should continue to examine these complex associations between HIV stigma, activism, and well-being among PLWH. As this work continues, PLWH, as well as interventionists and clinicians invested in improving well-being among PLWH, should carefully weigh the benefits and potential costs of activism.

Minority Stress, Activism, and Health in the Context of Economic Precarity: Results from a National Participatory Action Survey of Lesbian, Gay, Bisexual, Transgender, Queer, and Gender Non‐Conforming Youth

“…This finding is in line with theory and research on positive marginality and collective action in response to discrimination and perceived threats to social identity (Cronin et al., ; Simon et al., ; Unger, ). Furthermore, this association provides the first evidence for a positive connection between activism and collective action as forms of resistance to oppression that can be beneficial for well‐being (Earnshaw et al., ; Klar & Kasser, ; Thoits & Hewitt, ) particularly for LGBTQ & GNC youth and especially for LGBTQ and GNC youth of color.…”

Dualities of dementia illness narratives and their role in a narrative economy

“…This challenge to the living well concept mirrors some of the personal challenges of speaking as and for people living with dementia, in that efforts to represent oneself as a person living and coping with the condition can result in ‘dementia‐related fatigue’ (Bartlett ) akin to similar experiences of exhaustion for those with other conditions participating in health activism (see for example Earnshaw et al . account of people living with HIV).…”

Qualidade De Vida De Mulheres Transexuais Com Hiv/Aids

“…O ativismo proporciona benefícios para os indivíduos que sofrem estigma do HIV, por permitir que ocorra maior conexão entre os indivíduos em situação semelhante e sentido de propósito e significado na vida. A formação de redes sociais possibilita novas formas de lidar ativamente contra as várias facetas de discriminação, ressignificar a vida e um sentido de propósito e poder (30) . Sugere-se, a partir da análise dos achados, a compreensão de que a adesão das mulheres transexuais ao tratamento e a maior perspectiva de vida demanda ações de enfrentamento das redes sociais de apoio.…”