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A Photovoice Exploration of the Lived Experience of Intersectional Stigma among People Living with HIV

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Abstract

Stigma research among people living with HIV (PLWH) has been increasingly interpreted through the framework of intersectionality, which comprehends the interwovenness of vulnerable individuals’ identities. However, community-based participatory methods have not been widely employed to better understand these forms of stigma through an intersectional lens, despite such methods offering the opportunity for participants to define issues and solutions from their lived experiences. To advance this research, we employed photovoice to elicit grounded, visceral definitions of stigma for PLWH. Participants took pictures representing their identities and experiences with HIV and other stigmas and discussed them in groups and individual interviews, ultimately creating a virtual exhibit to educate and inspire others. Theme and narrative analysis uncovered patterns in the visual and textual data, revealing participants’ experiences of HIV stigma based on their intersections of sexuality, race/ethnicity, illness, and roles and expectations in specific scenarios. Stigma also fostered the development of participants’ strengths, such as resiliency, and new identities, such as educators. Participatory methods like photovoice, where participants can define intersectionality on their own terms, can help direct interventions to limit the PLWH’s lived stigmas and increase effective coping.

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References

  • Andersson, G. Z., Reinius, M., Eriksson, L. E., Svedhem, V., Esfahani, F. M., Deuba, K., Rao, D., Lyatuu, G. W., Giovenco, D., & Ekstrom, A. M. (2020). Stigma reduction interventions in people living with HIV to improve health-related quality of life. Lancet HIV, 7(2), e129–e140. https://doi.org/10.1016/s2352-3018(19)30343-1

    Article  PubMed  Google Scholar 

  • Berger, M. T. (2006). Workable sisterhood: The political journey of stigmatized women with HIV/AIDS. Princeton University Press.

    Google Scholar 

  • Bowleg, L. (2008). When Black + Lesbian + Woman ≠ Black Lesbian Woman: The methodological challenges of qualitative and quantitative intersectionality research. Sex Roles, 59, 312–325.

    Article  Google Scholar 

  • Bowleg, L. (2012a). “Once you’ve blended the cake, you can't take the parts back to the main ingredients”: Black gay and bisexual men's descriptions and experiences of intersectionality. Sex Roles, 68, 754–767.

    Article  Google Scholar 

  • Bowleg, L. (2012b). The problem with the phrase women and minorities: Intersectionality—an important theoretical framework for public health. American Journal of Public Health, 102(7), 1267–1273.

    Article  PubMed  PubMed Central  Google Scholar 

  • Bowleg, L., del Rio-Gonzalez, A. M., Holt, S. L., Perez, C., Massie, J. S., Mandell, J. E., & Boone, C. A. (2017). Intersectional epistemologies of ignorance: How behavioral and social science research shapes what we know think we know, and don’t know about US black men’s sexualities. Journal of Sex Research, 54(4), 577–603.

    Article  PubMed  Google Scholar 

  • Bowleg, L., Teti, M., Malebranche, D. J., & Tschann, J. M. (2013). "It's an uphill battle everyday": Intersectionality, low-income Black heterosexual men, and implications for HIV prevention research and interventions. Psychology of Men and Masculinity, 14(1), 25–34. https://doi.org/10.1037/a0028392

    Article  PubMed  Google Scholar 

  • Brewer, R., Hood, K. B., Moore, M., Spieldenner, A., Daunis, C., Mukherjee, S., Smith-Davis, M., Brown, G., Bowen, B., & Schneider, J. A. (2020). An exploratory study of resilience, HIV-related stigma, and HIV care outcomes among men who have sex with men (MSM) living with HIV in Louisiana. AIDS and Behavior, 24, 2119–2129. https://doi.org/10.1007/s10461-020-02778-5

    Article  PubMed  PubMed Central  Google Scholar 

  • Brinkley-Rubinstein, L. (2015). Understanding the effects of multiple stigmas among formerly incarcerated HIV-positive African American men. AIDS Education and Prevention, 27(2), 167–179. https://doi.org/10.1521/aeap.2015.27.2.167

    Article  PubMed  Google Scholar 

  • Castro, A., & Farmer, P. (2005). Understanding and addressing AIDS-related stigma: From anthropological theory to clinical practice in Haiti. American Journal of Public Health, 95(1), 53–59. https://doi.org/10.2105/AJPH.2003.028563

    Article  PubMed  PubMed Central  Google Scholar 

  • Chan, K. Y., Yang, Y., Zhang, K. L., & Reidpath, D. D. (2007). Disentangling the stigma of HIV/AIDS from the stigmas of drugs use, commercial sex and commercial blood donation–a factorial survey of medical students in China. BMC Public Health, 7(1), 1–12. https://doi.org/10.1186/1471-2458-7-280.

    Article  Google Scholar 

  • Cole, E. R. (2009). Intersectionality and research in psychology. American Psychologist, 64(3), 170–180. https://doi.org/10.1037/a0014564

    Article  PubMed  Google Scholar 

  • Collins, P. H. (1990). Black feminist thought: Knowledge, consciousness, and the politics of empowerment. Routledge.

    Google Scholar 

  • Crenshaw, K. (1991). Mapping the margins: intersectionality, identity politics, and violence against women of color. Standford Law Review, 43(6), 1241–1299.

    Article  Google Scholar 

  • Dworkin, S. L. (2005). Who is epidemiologically fathomable in the HIV/AIDS epidemic? Gender, sexuality, and intersectionality in public health. Culture, Health & Sexuality, 7(6), 615–623. https://doi.org/10.1080/13691050500100385

    Article  Google Scholar 

  • Earnshaw, V. A., & Chaudoir, S. R. (2009). From conceptualizing to measuring HIV stigma: A review of HIV stigma mechanism measures. AIDS and Behavior, 13(6), 1160–1177. https://doi.org/10.1007/s10461-009-9593-3

    Article  PubMed  PubMed Central  Google Scholar 

  • Earnshaw, V. A., Smith, L. R., Shuper, P. A., Fisher, W. A., Cornman, D. H., & Fisher, J. D. (2014). HIV stigma and unprotected sex among PLWH in KwaZulu-Natal, South Africa: A longitudinal exploration of mediating mechanisms. AIDS Care, 26(12), 1506–1513. https://doi.org/10.1080/09540121.2014.938015

    Article  PubMed  PubMed Central  Google Scholar 

  • Emlet, C. A., Tozay, S., & Raveis, V. H. (2011). “I’m not going to die from the AIDS”: Resilience in aging with HIV disease. The Gerontologist, 51(1), 101–111. https://doi.org/10.1093/geront/gnq060

    Article  PubMed  Google Scholar 

  • Emmer, C., Bosnjak, M., & Mata, J. (2020). The association between weight stigma and mental health: A meta-analysis. Obesity Reviews, 21(1), e12935. https://doi.org/10.1111/obr.12935

    Article  PubMed  Google Scholar 

  • Empower Missouri. (2020). Lawmakers, long-term HIV survivors push to rewrite Missouri’s HIV laws. Retrieved March 10 from https://empowermissouri.org/press-release-3-4-2020-hiv-missouri.

  • English, D., Rendina, H. J., & Parsons, J. T. (2018). The effects of intersecting stigma: A longitudinal examination of minority stress, mental health, and substance use among black, Latino, and multiracial gay and bisexual men. Psychology of Violence, 8(6), 669–679. https://doi.org/10.1037/vio0000218

    Article  PubMed  PubMed Central  Google Scholar 

  • Glynn, T. R., Llabre, M. M., Lee, J. S., Bedoya, C. A., Pinkston, M. M., O’Cleirigh, C., & Safren, S. A. (2019). Pathways to health: An examination of HIV-related stigma, life stressors, depression, and substance use. International Journal of Behavioral Medicine, 26(3), 286–296. https://doi.org/10.1007/s12529-019-09786-3

    Article  PubMed  PubMed Central  Google Scholar 

  • Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Prentice Hall.

    Google Scholar 

  • Guest, G., MacQueen, K. M., & Namey, E. E. (2012). Applied thematic analysis. Sage Publications.

    Book  Google Scholar 

  • Jackson-Best, F., & Edwards, N. (2018). Stigma and intersectionality: A systematic review of systematic reviews across HIV/AIDS, mental illness, and physical disability. BMC Public Health, 18(1), 919. https://doi.org/10.1186/s12889-018-5861-3

    Article  PubMed  PubMed Central  Google Scholar 

  • Johnson Shen, M., Freeman, R., Karpiak, S., Brennan-Ing, M., Seidel, L., & Siegler, E. L. (2019). The intersectionality of stigmas among key populations of older adults affected by HIV: A thematic analysis. Clinical Gerontologist, 42(2), 37–149.

    Article  Google Scholar 

  • Katz, I. T., Ryu, A. E., Onuegbu, A. G., Psaros, C., Weiser, S. D., Bangsberg, D. R., & Tsai, A. C. (2013). Impact of HIV-related stigma on treatment adherence: Systematic review and meta-synthesis. Journal of the International AIDS Society, 16(3 Suppl 2), 18640. https://doi.org/10.7448/ias.16.3.18640

    Article  PubMed  PubMed Central  Google Scholar 

  • Lam, A., Mayo, N. E., Scott, S., Brouillette, M. J., & Fellows, L. K. (2019). HIV-related stigma affects cognition in older men living with HIV. Journal of Acquired Immune Deficiency Syndromes, 80(2), 198–204. https://doi.org/10.1097/qai.0000000000001898

    Article  PubMed  Google Scholar 

  • Lazarus, J. V., Safreed-Harmon, K., Barton, S. E., Costagliola, D., Dedes, N., Del Amo Valero, J., Gatell, J. M., Baptista-Leite, R., Mendao, L., Porter, K., Vella, S., & Rockstroh, J. K. (2016). Beyond viral suppression of HIV—the new quality of life frontier. BMC Medicine, 14(1), 94. https://doi.org/10.1186/s12916-016-0640-4

    Article  PubMed  PubMed Central  Google Scholar 

  • Liebenberg, L. (2009). The visual image as discussion point: increasing validity in boundary crossing research. Qualitative Health Research, 9, 441–467.

    Google Scholar 

  • Link, B. G., & Phelan, J. C. (2001). Conceptualizing stigma. Annual Review of Sociology, 27, 363–385.

    Article  Google Scholar 

  • Logie, C. H., James, L., Tharao, W., & Loutfy, M. R. (2011). HIV, gender, race, sexual orientation, and sex work: A qualitative study of intersectional stigma experienced by HIV-positive women in Ontario, Canada. PLoS Medicine, 8(11), e1001124. https://doi.org/10.1371/journal.pmed.1001124

    Article  PubMed  PubMed Central  Google Scholar 

  • Logie, C. H., James, L., Tharao, W., & Loutfy, M. R. (2012). “We don’t exist”: A qualitative study of marginalization experienced by HIV-positive lesbian, bisexual, queer and transgender women in Toronto, Canada. Journal of the International AIDS Society, 15(2), 17392. https://doi.org/10.7448/ias.15.2.17392

    Article  PubMed  Google Scholar 

  • Logie, C. H., Lacombe-Duncan, A., Persad, Y., Ferguson, T. B., Yehdego, D. M., Ryan, S., Forrester, M., Moses, C., & Guta, A. (2019). The Transcending love arts-based workshop to address self-acceptance and intersectional stigma among transgender women of color in Toronto, Canada: Findings from a qualitative implementation science study. Trangender Health, 4(1), 35–45.

    Article  Google Scholar 

  • Loutfy, M., Tharao, W., Logie, C., Aden, M. A., Chambers, L. A., Wu, W., Abdelmaseh, M., & Calzavara, L. (2015). Systematic review of stigma reducing interventions for African/Black diasporic women. Journal of the International AIDS Society, 18(1), 19835. https://doi.org/10.7448/ias.18.1.19835

    Article  PubMed  PubMed Central  Google Scholar 

  • Lunze, K., Lioznov, D., Cheng, D. M., Nikitin, R. V., Coleman, S. M., Bridden, C., Blokhina, E., Krupitsky, E., & Samet, J. H. (2017). HIV stigma and unhealthy alcohol use among people living with HIV in Russia. AIDS and Behavior, 21(9), 2609–2617. https://doi.org/10.1007/s10461-017-1820-8

    Article  PubMed  PubMed Central  Google Scholar 

  • Mak, W. W. S., Mo, P. K. H., Ma, G. Y. K., & Lam, M. Y. Y. (2017). Meta-analysis and systematic review of studies on the effectiveness of HIV stigma reduction programs. Social Science and Medicine, 188, 30–40. https://doi.org/10.1016/j.socscimed.2017.06.045

    Article  PubMed  Google Scholar 

  • Mak, W. W., Poon, C. Y., Pun, L. Y., & Cheung, S. F. (2007). Meta-analysis of stigma and mental health. Social Science and Medicine, 65(2), 245–261. https://doi.org/10.1016/j.socscimed.2007.03.015

    Article  PubMed  Google Scholar 

  • Meisenhelder, J. B., & LaCharite, C. L. (1989). Fear of contagion: A stress response to acquired immunodeficiency syndrome. Advances in Nursing Science, 11, 29–38.

    Article  PubMed  Google Scholar 

  • Mgbako, O., Benoit, E., Iyengar, N. S., Kuhner, C., Brinker, D., & Duncan, D. T. (2020). “Like a ticking time bomb”: The persistence of trauma in the HIV diagnosis experience among black men who have sex with men in New York City. BMC Public Health, 20(1), 1–14. https://doi.org/10.1186/s12889-020-09342-9

    Article  Google Scholar 

  • Parker, R., & Aggleton, P. (2003). HIV and AIDS-related stigma and discrimination: A conceptual framework and implications for action. Social Science and Medicine, 57(1), 13–24. http://www.ncbi.nlm.nih.gov/pubmed/12753813.

  • Quinn, K., Bowleg, L., & Dickson-Gomez, J. (2019). The fear of being Black plus the fear of being gay”: The effects of intersectional stigma on PrEP use among young Black gay, bisexual, and other men who have sex with men. Social Science and Medicine, 232, 86–93.

    Article  PubMed  Google Scholar 

  • Quinn, K. G., Reed, S. J., Dickson-Gomez, J., & Kelly, J. A. (2018). An exploration of syndemic factors that influence engagement in HIV care among black men. Qualitative Health Research, 28(7), 1077–1087. https://doi.org/10.1177/1049732318759529

    Article  PubMed  PubMed Central  Google Scholar 

  • Quinn, K., Voisin, D. R., Bouris, A., Jaffe, K., Kuhns, L., Eavou, R., & Schneider, J. (2017). Multiple dimensions of stigma and health related factors among young black men who have sex with men. AIDS and Behavior, 21(1), 207–216. https://doi.org/10.1007/s10461-016-1439-1

    Article  PubMed  PubMed Central  Google Scholar 

  • Reif, S., Wilson, E., McAllaster, C., & Pence, B. (2019). The relationship of HIV-related stigma and health care outcomes in the US deep south. AIDS and Behavior, 23(Suppl 3), 242–250. https://doi.org/10.1007/s10461-019-02595-5

    Article  PubMed  Google Scholar 

  • Rendina, H. J., Weaver, L., Millar, B. M., Lopez-Matos, J., & Parsons, J. T. (2019). Psychosocial well-being and HIV-related immune health outcomes among HIV-positive older adults: Support for a biopsychosocial model of HIV stigma and health. Journal of the International Association of Providers of AIDS Care, 18, 2325958219888462. https://doi.org/10.1177/2325958219888462

    Article  PubMed  PubMed Central  Google Scholar 

  • Rice, W. S., Logie, C. H., Napoles, T. M., Walcott, M., Batchelder, A. W., Kempf, M. C., Wingood, G. M., Konkle-Parker, D. J., Turan, B., Wilson, T. E., Johnson, M. O., Weiser, S. D., & Turan, J. M. (2018). Perceptions of intersectional stigma among diverse women living with HIV in the United States. Social Science and Medicine, 208, 9–17. https://doi.org/10.1016/j.socscimed.2018.05.001

    Article  PubMed  Google Scholar 

  • Rich, J. A., & Grey, C. M. (2005). Pathways to recurrent trauma among young Black men: Traumatic stress, substance use, and the “code of the street.” American Journal of Public Health, 95(5), 816–824. https://doi.org/10.2105/AJPH.2004.044560

    Article  PubMed  PubMed Central  Google Scholar 

  • Riessman, C. K. (1993). Narrative analysis. Sage Publications.

    Google Scholar 

  • Rueda, S., Mitra, S., Chen, S., Gogolishvili, D., Globerman, J., Chambers, L., Wilson, M., Logie, C. H., Shi, Q., Morassaei, S., & Rourke, S. B. (2016). Examining the associations between HIV-related stigma and health outcomes in people living with HIV/AIDS: A series of meta-analyses. British Medical Journal Open, 6(7), e011453. https://doi.org/10.1136/bmjopen-2016-011453

    Article  Google Scholar 

  • Sangaramoorthy, T., Jamison, A., & Dyer, T. (2017). Intersectional stigma among midlife and older Black women living with HIV. Culture, Health & Sexuality, 19(12), 1329–1343. https://doi.org/10.1080/13691058.2017.1312530

    Article  Google Scholar 

  • Atlas.ti Qualitative Data Analysis Software. (2011). (Version 6.2). Scientific Software, Berlin.

  • Stangl, A. L., Earnshaw, V. A., Logie, C. H., van Brakel, W., Simbayi, L. C., Barré, I., & Dovidio, J. F. (2019). The health stigma and discrimination framework: A global crosscutting framework to inform research intervention development and policy on health-related stigmas. BMC Medicine, 17. https://doi.org/10.1186/s12916-019-1271-3

  • Stangl, A. L., Lloyd, J. K., Brady, L. M., Holland, C. E., & Baral, S. (2013). A systematic review of interventions to reduce HIV-related stigma and discrimination from 2002 to 2013: How far have we come? Journal of the International AIDS Society, 16(3 Suppl 2), 18734. https://doi.org/10.7448/IAS.16.3.18734

    Article  PubMed  PubMed Central  Google Scholar 

  • Teti, M., French, B., Bonney, L., & Lightfoot, M. (2015). “I created something new with something that had died”: Photo-narratives of positive transformation among women with HIV. AIDS and Behavior, 19(7), 1275–1287. https://doi.org/10.1007/s10461-015-1000-7

    Article  PubMed  PubMed Central  Google Scholar 

  • Teti, M., Koegler, E., Conserve, D. F., Handler, L., & Bedford, M. (2018). A scoping review of photovoice research among people with HIV. Journal of the Association of Nurses in AIDS Care, 29(4), 504–527. https://doi.org/10.1016/j.jana.2018.02.010

    Article  Google Scholar 

  • Teti, M., Pichon, L., Kabel, A., Farnan, R., & Binson, D. (2013). Taking pictures to take control: The empowerment experiences of women living with HIV/AIDS through photovoice. Journal of the Association of Nurses in AIDS Care, 24(6), 539–553. https://doi.org/10.1016/j.jana.2013.05.001

    Article  Google Scholar 

  • Teti, M., Rolbiecki, A. Z., & N., Hampton, D., & Binson, D. . (2014). Photo-stories of stigma among gay-identified men with HIV in small-town America: A qualitative exploration of voiced and visual accounts and intervention implications. Arts and Health, 8(1), 50–64.

    Article  Google Scholar 

  • Turan, B., Budhwani, H., Fazeli, P. L., Browning, W. R., Raper, J. L., Mugavero, M. J., & Turan, J. M. (2017). How does stigma affect people living with HIV? The mediating roles of internalized and anticipated HIV stigma in the effects of perceived community stigma on health and psychosocial outcomes. AIDS and Behavior, 21(1), 283–291. https://doi.org/10.1007/s10461-016-1451-5

    Article  PubMed  PubMed Central  Google Scholar 

  • Turan, B., Rice, W. S., Crockett, K. B., Johnson, M., Neilands, T. B., Ross, S. N., Kempf, M. C., Konkle-Parker, D., Wingood, G., Tien, P. C., Cohen, M., Wilson, T. E., Logie, C. H., Sosanya, O., Plankey, M., Golub, E., Adimora, A. A., Parish, C., Weiser, S. D., & Turan, J. M. (2019). Longitudinal association between internalized HIV stigma and antiretroviral therapy adherence for women living with HIV: The mediating role of depression. AIDS, 33(3), 571–576. https://doi.org/10.1097/qad.0000000000002071

    Article  PubMed  Google Scholar 

  • Turan, J. M., Elafros, M. A., Logie, C. H., Banik, S., Turan, B., Crockett, K. B., Pescosolido, B., & Murray, S. M. (2019). Challenges and opportunities in examining and addressing intersectional stigma and health. BMC Medicine, 17(1), 7. https://doi.org/10.1186/s12916-018-1246-9

    Article  PubMed  PubMed Central  Google Scholar 

  • UNAIDS. (2014). 90–90–90: An ambitious treatment target to help end the AIDS epidemic. Retrieved June 30 from http://www.unaids.org/sites/default/files/media_asset/90-90-90_en.pdf.

  • Wang, C. C. (1999). Photovoice: A participatory action research strategy applied to women’s health. Journal of Women’s Health, 8(2), 185–192.

    Article  PubMed  Google Scholar 

  • Ward, E. G. (2005). Homophobia hypermasculinity and the US black church. Culture, Health and Sexuality, 7(5), 493–504.

    Article  PubMed  Google Scholar 

  • Watkins-Hayes, C. (2014). Intersectionality and the sociology of HIV/AIDS: Past, present, and future research directions. Annual Review of Sociology, 40, 431–457.

    Article  Google Scholar 

  • Watkins-Hayes, C. (2019). Remaking a life: How women living with HIV/AIDS confront inequality. University of California Press.

    Book  Google Scholar 

  • Zukoski, A. P., & Thorburn, S. (2009). Experiences of stigma and discrimination among adults living with HIV in a low HIV-prevalence context: A qualitative analysis. AIDS Patient Care and STDS, 23(4), 267–276. https://doi.org/10.1089/apc.2008.0168

    Article  PubMed  Google Scholar 

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Acknowledgements

We thank our participants for sharing their stories. A photovoice exploration of the lived experience of intersectional stigma among people living with HIV.

Funding

Funding for this study came from a grant from the Health Forward Foundation.

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Authors and Affiliations

  1. Department of Public Health, University of Missouri, 806 Lewis Hall, Columbia, MO, 65201, USA

    Michelle Teti, Tyler Myroniuk, Shane Epping & Kaleea Lewis

  2. Faculty of Graduate Studies, Dalhousie University, Halifax, NS, Canada

    Linda Liebenberg

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  1. Michelle Teti
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Correspondence to Michelle Teti.

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Teti, M., Myroniuk, T., Epping, S. et al. A Photovoice Exploration of the Lived Experience of Intersectional Stigma among People Living with HIV. Arch Sex Behav 50, 3223–3235 (2021). https://doi.org/10.1007/s10508-021-02058-w

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