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 USA 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.

KEYWORDS:

• Activism
• depressive symptoms
• people living with HIV
• stigma
• well-being

Acknowledgements

The content is solely the responsibility of the authors and does not necessarily represent the official views of the Center for Interdisciplinary Research on AIDS or the National Institutes of Health. We are grateful to the Community Research Core at the Center for Research on AIDS, Margaret Lippitt and Harry Jin, and our community collaborators for their contributions to this work. We are also grateful to the participants of this study for sharing their experiences with us.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by the National Institute of Mental Health [grants P30MH02294 and T32MH020031]; and the Agency for Healthcare Research & Quality [grant K12HS022986].