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Radical Pleasure: Feminist Digital Storytelling by, with, and for Women Living with HIV

Abstract

Despite the fact that HIV can be controlled with medication to undetectable levels where it cannot be passed on, stigmatization of women living with HIV persists. Such stigmatization pivots on stereotypes around sex and sexism and has force in women’s lives. Our aim was to create an inspirational resource for women living with HIV regarding sex, relationships, and sexuality: www.lifeandlovewithhiv.ca (launched in July 2018). This paper describes the development and mixed-method evaluation of our first year and a half activities. We situated our work within a participatory arts-based knowledge translation planning framework and used multiple data sources (Google Analytics, stories and comments on the website, team reflections over multiple meetings) to report on interim outcomes and impacts. In our first 1.5 years, we recruited and mentored 12 women living with HIV from around the world (Canada, Australia, New Zealand, Kenya, South Africa, Spain, Nigeria, and the U.S.) to write their own stories, with the support of a mentor/editor, as a way of regaining control of HIV narratives and asserting their right to have pleasurable, fulfilling, and safer sexual lives. Writers published 43 stories about pleasure, orgasm, bodies, identities, trauma, resilience, dating, disclosure, self-love, and motherhood. Our social media community grew to 1600, and our website received approximately 300 visits per month, most by women (70%) and people aged 25–44 years (65%), from more than 50 cities globally, with shifts in use and demographics over time. Qualitative data indicated the power of feminist digital storytelling for opportunity, access, validation, and healing, though not without risks. We offer recommendations to others interested in using arts-based digital methods to advance social equity in sexual health.

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References

  1. Agadjanian, V., & Menjívar, C. (2011). Fighting down the scourge, building up the church: Organisational constraints in religious involvement with HIV/AIDS in Mozambique. Global Public Health, 6(Suppl. 2), S148–S162. https://doi.org/10.1080/17441692.2011.598869.

    Article  PubMed  PubMed Central  Google Scholar 

  2. AIDES. (2016). #Révélation. AIDES. Retrieved May 19 from http://www.aides.org/campagne/revelation.

  3. Arrey, A. E., Bilsen, J., Lacor, P., & Deschepper, R. (2015). “It’s my secret”: Fear of disclosure among Sub-Saharan African migrant women living with HIV/AIDS in Belgium. PLoS ONE, 10(3), e0119653. https://doi.org/10.1371/journal.pone.0119653.

    Article  PubMed  PubMed Central  Google Scholar 

  4. Barry, C. A., Britten, N., Barber, N., Bradley, C., & Stevenson, F. (1999). Using reflexivity to optimize teamwork in qualitative research. Qualitative Health Research, 9(1), 26–44. https://doi.org/10.1177/104973299129121677.

    Article  PubMed  Google Scholar 

  5. Becker, D. (2014). The dating game: Accepting the past and living in the present. Positive Living Newsletter: Girl Talk, 6–7.

  6. Boydell, K. M., Gladstone, B. M., Volpe, T., Allemang, B., & Stasiulis, E. (2012a). The production and dissemination of knowledge: A scoping review of arts-based health research. Forum Qualitative Sozialforschung/Forum: Qualitative Social Research, 13(1). https://doi.org/10.17169/fqs-13.1.1711.

  7. Boydell, K. M., Hodgins, M., Gladstone, B. M., Stasiulis, E., Belliveau, G., Cheu, H., … Parsons, J. (2016). Arts-based health research and academic legitimacy: Transcending hegemonic conventions. Qualitative Research, 16(6), 681–700. https://doi.org/10.1177/1468794116630040.

    Article  Google Scholar 

  8. Boydell, K., Volpe, T., Cox, S., Katz, A., Dow, R., Brunger, F., … Wong, L. (2012b). Ethical challenges in arts-based health research. International Journal of the Creative Arts in Interdisciplinary Practice, 11, 1–17. https://www.researchgate.net/publication/265042212_Ethical_Challenges_in_Arts-based_Health_Research.

  9. Brener, L., Wilson, H., Slavin, S., & de Wit, J. (2013). The impact of living with HIV: Differences in experiences of stigma for heterosexual and homosexual people living with HIV in Australia. Sexual Health, 10(4), 316–319. https://doi.org/10.1071/SH12170.

    Article  PubMed  Google Scholar 

  10. Caballero, M. (2016). Pleasure is a human right. Retrieved June 1 from http://www.hivequal.org/hiv-equal-online/feature-pleasure-is-a-human-right.

  11. Callander, D., McManus, H., Guy, R., Hellard, M., O’Connor, C. C., Fairley, C. K., … Donovan, B. (2018). Rising chlamydia and gonorrhoea incidence and associated risk factors among female sex workers in Australia: A retrospective cohort study. Sexually Transmitted Diseases, 45(3), 199–206. https://doi.org/10.1097/olq.0000000000000714.

    Article  PubMed  Google Scholar 

  12. Canadian HIV/AIDS Legal Network. (2017). Women and HIV: The criminalization of HIV non-disclosure. Retrieved July 13 from http://www.aidslaw.ca/site/women-and-hiv-women-and-the-criminalization-of-hiv-non-disclosure/?lang=en.

  13. Canadian Institutes of Health Research. (2011). Canada’s strategy for patient-oriented research: Improving health outcomes through evidence-informed care. https://cihr-irsc.gc.ca/e/documents/P-O_Research_Strategy-eng.pdf.

  14. Canadian Institutes of Health Research. (2014). Knowledge translation. Canadian Institutes of Health Research. Retrieved August 13, 2015 from http://www.cihr-irsc.gc.ca/e/45321.html.

  15. Carlsson-Lalloo, E., Rusner, M., Mellgren, Å., & Berg, M. (2016). Sexuality and reproduction in HIV-positive women: A meta-synthesis. AIDS Patient Care and STDs, 30(2), 59–69. https://doi.org/10.1089/apc.2015.0260.

    Article  Google Scholar 

  16. Carter, A., Greene, S., Money, D., Sanchez, M., Webster, K., Nicholson, V., … Kaida, A. (2018a). The importance of sex in the lives of women living with HIV: A critical quantitative analysis. International Journal of Sexual Health, 30(1), 92–110. https://doi.org/10.1080/19317611.2018.1447527.

    Article  Google Scholar 

  17. Carter, A., Greene, S., Money, D., Sanchez, M., Webster, K., Nicholson, V., … Kaida, A. (2018b). Supporting the sexual rights of women living with HIV: A critical analysis of sexual satisfaction and pleasure across five relationship types. Journal of Sex Research, 55(9), 1134–1154. https://doi.org/10.1080/00224499.2018.1440370.

    Article  PubMed  Google Scholar 

  18. Carter, A., Greene, S., Money, D., Sanchez, M., Webster, K., Nicholson, V., … Kaida, A. (2019). Love with HIV: A latent class analysis of sexual and intimate relationship experiences among women living with HIV in Canada. Archives of Sexual Behavior, 48(4), 1015–1040. https://doi.org/10.1007/s10508-019-1418-5.

    Article  PubMed  Google Scholar 

  19. Carter, A., Greene, S., Money, D., Sanchez, M., Webster, K., Nicholson, V., … Kaida, A. (2017). The problematization of sexuality among women living with HIV and a new feminist approach for understanding and enhancing women’s sexual lives. Sex Roles, 77(11–12), 779–800. https://doi.org/10.1007/s11199-017-0826-z.

    Article  Google Scholar 

  20. Carter, A., Greene, S., Nicholson, V., O’Brien, N., Sanchez, M., Pokomandy, A. D., … Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS) Research Team. (2015). Breaking the glass ceiling: Increasing the meaningful involvement of women living with HIV/AIDS (MIWA) in the design and delivery of HIV/AIDS services. Health Care for Women International, 36(8), 936–964. https://doi.org/10.1080/07399332.2014.954703.

  21. Carter, A., Patterson, S., Kestler, M., de Pokomandy, A., Hankins, C., Gormley, R., … Kaida, A. (2020). Predictors of sexual anxiety among women living with HIV in the era of antiretroviral treatment suppressing HIV transmission. Sexuality Research & Social Policy, 17(4), 765–779. https://doi.org/10.1007/s13178-020-00432-2.

  22. Closson, E. F., Mimiaga, M. J., Sherman, S. G., Tangmunkongvorakul, A., Friedman, R. K., Limbada, M., … HPTN063 Study Team (2015). Intimacy versus isolation: A qualitative study of sexual practices among sexually active HIV-infected patients in HIV care in Brazil, Thailand, and Zambia. PLoS ONE, 10(3), 16. https://doi.org/10.1371/journal.pone.0120957.

  23. Colombini, M., Mutemwa, R., Kivunaga, J., Stackpool Moore, L., & Mayhew, S. H. (2014). Experiences of stigma among women living with HIV attending sexual and reproductive health services in Kenya: a qualitative study. Bmc Health Services Research, 14(1), 412. https://doi.org/10.1186/1472-6963-14-412.

    Article  PubMed  PubMed Central  Google Scholar 

  24. Crenshaw, K. (1989). Demarginalizing the intersection of race and sex: A black feminist critique of antidiscrimination doctrine, feminist theory and antiracist politics. The University of Chicago Legal Forum, 140(1), 139–167.

    Google Scholar 

  25. De Vecchi, N., Kenny, A., Dickson-Swift, V., & Kidd, S. (2016). How digital storytelling is used in mental health: A scoping review. International Journal of Mental Health Nursing, 25(3), 183–193. https://doi.org/10.1111/inm.12206.

    Article  PubMed  Google Scholar 

  26. Eisinger, R. W., Dieffenbach, C. W., & Fauci, A. S. (2019). HIV viral load and transmissibility of HIV infection: Undetectable equals untransmittable. Journal of the American Medical Association, 321(5), 451–452. https://doi.org/10.1001/jama.2018.21167.

    Article  PubMed  Google Scholar 

  27. Flicker, S., Danforth, J. Y., Wilson, C., Oliver, V., Larkin, J., Restoule, J.-P., … Prentice, T. (2014). “Because we have really unique art”: Decolonizing research with Indigenous youth using the arts. International Journal of Indigenous Health, 10(1), 16. https://doi.org/10.18357/ijih.101201513271.

    Article  Google Scholar 

  28. Fraser, K., & Al Sayah, F. (2011). Arts-based methods in health research: A systematic review of the literature. Arts & Health, 3, 110–145. https://doi.org/10.1080/17533015.2011.561357.

    Article  Google Scholar 

  29. Fratti, K. (2017). I am HIV positive. This is what it’s like to date. Retrieved January 25 from http://www.redbookmag.com/love-sex/relationships/a48131/dating-with-hiv/.

  30. Gillman, S. L. (1988). Disease and representation: Images of illness from madness to AIDS. Ithaca, NY: Cornell University Press.

    Book  Google Scholar 

  31. Gray, R., Sinding, C., Ivonoffski, V., Fitch, M., Hampson, A., & Greenberg, M. (2000). The use of research-based theatre in a project related to metastatic breast cancer. Health Expectations, 3(2), 137–144.

  32. Greene, S. (2013). Peer research assistantships and the ethics of reciprocity in community-based research. Journal of Empirical Research on Human Research Ethics, 8(2), 141–152.

    Article  Google Scholar 

  33. Greene, S., Odhiambo, A. J., Muchenje, M., Symington, A., Cotnam, J., Dunn, K., … Kaida, A. (2019). How women living with HIV react and respond to learning about Canadian law that criminalises HIV non-disclosure: ‘How do you prove that you told?’ Culture, Health & Sexuality, 21(10), 1087–1102. https://doi.org/10.1080/13691058.2018.1538489.

    Article  Google Scholar 

  34. Gurevich, M., Mathieson, C. M., Bower, J., & Dhayanandhan, B. (2007). Disciplining bodies, desires and subjectivities: Sexuality and HIV-positive women. Feminism & Psychology, 17(1), 9–38. https://doi.org/10.1177/0959353507072910.

    Article  Google Scholar 

  35. Guse, K., Spaget, A., Hill, A., Lira, A., Healthcock, S., & Gilliam, M. (2013). Digital storytelling: A novel methodology for sexual health promotion. American Journal of Sexuality Education, 8(6), 213–227.

    Article  Google Scholar 

  36. Halli, S. S., Khan, C. G. H., Moses, S., Blanchard, J., Washington, R., Shah, I., & Isac, S. (2017). Family and community level stigma and discrimination among women living with HIV/AIDS in a high HIV prevalence district of India. Journal of HIV/AIDS & Social Services, 16(1), 4–19. https://doi.org/10.1080/15381501.2015.1107798.

    Article  Google Scholar 

  37. Harris, G. (2006). Practicing HIV/AIDS community-based research. AIDS Care, 18(7), 731–738.

    Article  Google Scholar 

  38. Hoffman, R. (2009). I have something to tell you: A memoir. New York: Atria Books.

    Google Scholar 

  39. Hooks, B. (1984). Feminist theory: From margin to center. Boston: South End Press.

    Google Scholar 

  40. International Community of Women Living with HIV/AIDS. (2015). Criminalization of women living with HIV: Non-disclosure, exposure and transmission (Issue Paper 2). http://www.iamicw.org/resources/document-library/criminalization-of-women-living-with-hiv-non-disclosure-exposure-and-transmission.

  41. Israel, B. A., Schulz, A. J., Parker, E. A., & Becker, A. B. (1998). Review of community-based research: Assessing partnership approaches to improve public health. Annual Review of Public Health, 19(1), 173–202. https://doi.org/10.1146/annurev.publhealth.19.1.173.

    Article  PubMed  Google Scholar 

  42. Jull, J., Giles, A., & Graham, I. D. (2017). Community-based participatory research and integrated knowledge translation: Advancing the co-creation of knowledge. Implementation Science, 12(1), 150. https://doi.org/10.1186/s13012-017-0696-3.

    Article  PubMed  Google Scholar 

  43. Kaida, A., Carter, A., de Pokomandy, A., Patterson, S., Proulx-Boucher, K., Nohpal, A., … Thomas-Pavanel, J. (2015). Sexual inactivity and sexual satisfaction among women living with HIV in Canada in the context of growing social, legal and public health surveillance. Journal of the International AIDS Society, 18(5), 20284–20294. https://doi.org/10.7448/IAS.18.6.20284.

    Article  PubMed  PubMed Central  Google Scholar 

  44. Kaida, A., Carter, A., Nicholson, V., Lemay, J., O’Brien, N., Greene, S., … on behalf of the Chiwos Research Team. (2019a). Hiring, training, and supporting Peer Research Associates: Operationalizing community-based research principles within epidemiological studies by, with, and for women living with HIV. Harm Reduction Journal, 16(1), 47. https://doi.org/10.1186/s12954-019-0309-3.

    Article  PubMed  PubMed Central  Google Scholar 

  45. Kaida, A., Greene, S., Shore, K., Nicholson, V., Muchenje, M., Symington, A., … Nyman, S. (2019b). “I found my voice”: Acts of resilience and resistance to the criminalization of HIV non-disclosure among women living with HIV in Canada [Abstract]. Presented at the annual Canadian Conference on HIV/AIDS Research.

  46. Keegan, A., Lambert, S., & Petrak, J. (2005). Sex and relationships for HIV-positive women since HAART: A qualitative study. AIDS Patient Care and STDs, 19(10), 645–654. https://doi.org/10.1089/apc.2005.19.645.

    Article  PubMed  Google Scholar 

  47. Keifer-Boyd, K. (2011). Arts-based research as social justice activism: Insight, inquiry, imagination, embodiment, relationality. International Review of Qualitative Research, 4(1), 3–19. https://doi.org/10.1525/irqr.2011.4.1.3.

    Article  Google Scholar 

  48. Kukkonen, T., & Cooper, A. (2019). An arts-based knowledge translation (ABKT) planning framework for researchers. Evidence and Policy: A Journal of Research, Debate and Practice, 15(2), 293–311. https://doi.org/10.1332/174426417X15006249072134.

    Article  Google Scholar 

  49. Lafrenière, D., & Cox, S. M. (2012). ‘If you can call it a poem’: Toward a framework for the assessment of arts-based works. Qualitative Research, 13(3), 318–336. https://doi.org/10.1177/1468794112446104.

    Article  Google Scholar 

  50. Larsen, M. E., Vaughan, P., Bennett, J., & Boydell, K. (2018). The BIG Anxiety Project: Using the arts to visually explore public experiences and attitudes to anxiety. Journal of Applied Arts and Health, 9(1), 85–97. https://doi.org/10.1386/jaah.9.1.85_1.

    Article  Google Scholar 

  51. Lawless, S., Crawford, J., Kippax, S., & Spongberg, M. (1996a). ‘If it’s not on…’: Heterosexuality for HIV-positive women. Venereology, 9(1), 15–23.

    Google Scholar 

  52. Lawless, S., Kippax, S., & Crawford, J. (1996b). Dirty, diseased and undeserving: The positioning of HIV positive women. Social Science and Medicine, 43(9), 1371–1377. https://doi.org/10.1016/0277-9536(96)00017-2.

    Article  PubMed  Google Scholar 

  53. Lekas, H. M., Siegel, K., & Schrimshaw, E. W. (2006). Continuities and discontinuities in the experiences of felt and enacted stigma among women with HIV/AIDS. Qualitative Health Research, 16(9), 1165–1190. https://doi.org/10.1177/1049732306292284.

    Article  PubMed  Google Scholar 

  54. Li, Y., Marshall, C. M., Rees, H. C., Nunez, A., Ezeanolue, E. E., & Ehiri, J. E. (2014). Intimate partner violence and HIV infection among women: A systematic review and meta-analysis. Journal of the International AIDS Society, 17, 18845. https://doi.org/10.7448/ias.17.1.18845.

    Article  PubMed  PubMed Central  Google Scholar 

  55. Lincoln, Y. S. (1995). Emerging criteria for quality in qualitative and interpretive research. Qualitative Inquiry, 1(3), 275–289. https://doi.org/10.1177/107780049500100301.

    Article  Google Scholar 

  56. Logie, C., James, L., Tharao, W., & Loutfy, M. (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  Google Scholar 

  57. Loutfy, M., de Pokomandy, A., Carter, A., O’Brien, N., Lewis, J., Nicholson, V., … CHIWOS Research Team. (2017). Cohort profile: The Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS). PLoS ONE, 12(9), e0184708. https://doi.org/10.1371/journal.pone.0184708.

  58. Loutfy, M., Greene, S., Kennedy, V. L., Lewis, J., Thomas-Pavanel, J., Conway, T., … on behalf of the CHIWOS Research Team. (2016). Establishing the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS): Operationalizing community-based research in a large national quantitative study. BMC Medical Research Methodology, 16(1), 101–110. https://doi.org/10.1186/s12874-016-0190-7.

    Article  PubMed  PubMed Central  Google Scholar 

  59. MacEntee, K., Burkholder, C., & Schwab-Cartas, J. (2016). What’s a cellphilm? Integrating mobile phone technology into participatory visual research and activism. Boston: Sense Publishers.

    Google Scholar 

  60. Machtinger, E., Wilson, T., Haberer, J. E., & Weiss, D. (2012). Psychological trauma and PTSD in HIV-positive women: A meta-analysis. AIDS and Behavior, 16(8), 2091–2100. https://doi.org/10.1007/s10461-012-0158-5.

    Article  PubMed  Google Scholar 

  61. McClelland, A., & Whitbread, J. (2016). PosterVirus: Claiming sexual autonomy for people with HIV through collective action. In C. Kelly & M. Orsini (Eds.), Mobilizing metaphor: Art, culture, and disability activism in Canada (pp. 76–97). Vancouver: UBC Press.

    Google Scholar 

  62. Montaner, J. S. G., Hogg, R., Wood, E., Kerr, T., Tyndall, M., Levy, A. R., & Harrigan, P. R. (2006). The case for expanding access to highly active antiretroviral therapy to curb the growth of the HIV epidemic. The Lancet, 368(9534), 531–536. https://doi.org/10.1016/s0140-6736(06)69162-9.

    Article  Google Scholar 

  63. Mykhalovskiy, E., Hastings, C., Sanders, C., Hayman, M., & Bisaillon, L. (2016). “Callous, cold, and deliberately duplicitous:” Racialization, immigration, and representation of HIV criminalization in Canadian mainstream newspapers. Report funded by a grant from the Canadian Institutes of Health Research Centre for Social Research in HIV Prevention. http://www.publicimpactpr.com/images/clients/can/callous_cold_report_final.pdf.

  64. Newman, M. A., Ziebland, S., & Barker, K. L. (2009). Patients’ views of a multimedia resource featuring experiences of rheumatoid arthritis: Pilot evaluation of www.healthtalkonline.org. Health Informatics J, 15(2), 147–159. https://doi.org/10.1177/1460458209102974.

    Article  PubMed  Google Scholar 

  65. Ngozi Adichie, C. (2009). The danger of single story. https://www.ted.com/talks/chimamanda_ngozi_adichie_the_danger_of_a_single_story?language=en.

  66. Nicholson, V., Sanchez, M., Webster, K., & Carter, A. (2016). Life and love after HIV: A woman’s sharing circle [Interview].

  67. Pacific AIDS Network. (2014). CBR tips: Compensating peer researchers 2014 Pacific AIDS Network. Retrieved January 28 2020 from https://pacificaidsnetwork.org/files/2014/06/CBR-Tips-Compensating-Peer-Researchers-Pacific-AIDS-Network-Final.pdf.

  68. Patterson, S., Carter, A., Nicholson, V., Webster, K., Ding, E., Kestler, M., … Kaida, A. (2017). Condomless sex among virally suppressed women with HIV with regular HIV-serodiscordant sexual partners in the era of treatment-as-prevention. Journal of Acquired Immune Deficiency Syndromes, 76(4), 372–381. https://doi.org/10.1097/QAI.0000000000001528.

    Article  PubMed  Google Scholar 

  69. Patterson, S., Nicholson, V., Milloy, M. J., Ogilvie, G., Hogg, R. S., Carter, A., … Kaida, A. (2019). Awareness and understanding of HIV non-disclosure case law and the role of healthcare providers in discussions about the criminalization of HIV non-disclosure among women living with HIV in Canada. AIDS and Behavior. https://doi.org/10.1007/s10461-019-02463-2.

    Article  PubMed Central  Google Scholar 

  70. Patton, C. (1994). Last served? Gendering the HIV pandemic. New York: Taylor & Francis.

  71. Persson, A. (2016). ‘The world has changed’: Pharmaceutical citizenship and the reimagining of serodiscordant sexuality among couples with mixed HIV status in Australia. Sociology of Health & Illness, 38(3), 380–395. https://doi.org/10.1111/1467-9566.12347.

    Article  Google Scholar 

  72. Persson, A., & Newman, C. (2008). Making monsters: Heterosexuality, crime and race in recent Western media coverage of HIV. Sociology of Health & Illness, 30(4), 632–646. https://doi.org/10.1111/j.1467-9566.2008.01082.x.

    Article  Google Scholar 

  73. Petko, D., Egger, N., Schmitz, F., Totter, A., Hermann, T., & Guttormsen, S. (2015). Coping through blogging: A review of studies on the potential benefits of weblogs for stress reduction. Cyberpsychology: Journal of Psychosocial Research on Cyberspace, 9(2), 5. https://doi.org/10.5817/CP2015-2-5.

  74. Petretti, S. (2017). Love positive women. Speaking Up. Retrieved June 25 from https://hivpolicyspeakup.wordpress.com/2017/02/16/love-positive-women/.

  75. Prevention Access Campaign. (2017). Undetectable = untransmittable. Prevention Access Campaign. Retrieved May 19, 2017 from https://www.preventionaccess.org/undetectable.

  76. Robinson, J. L., Narasimhan, M., Amin, A., Morse, S., Beres, L. K., Yeh, P. T., & Kennedy, C. E. (2017). Interventions to address unequal gender and power relations and improve self-efficacy and empowerment for sexual and reproductive health decision-making for women living with HIV: A systematic review. PLoS ONE, 12(8), e0180699. https://doi.org/10.1371/journal.pone.0180699.

    Article  PubMed  PubMed Central  Google Scholar 

  77. Roche, J. (2018a). Queer sex: A trans and non-binary guide to intimacy, pleasure and relationships. London: Jessica Kingsley Publishers.

    Google Scholar 

  78. Roche, J. (2018b). A radical space? Life and love with HIV. Retrieved December 1 from https://www.lifeandlovewithhiv.ca/a-radical-space/.

  79. Roche, J. (2019). Trans power: Own your gender. London: Jessica Kingsley Publishers.

    Google Scholar 

  80. Rodger, A. J., Cambiano, V., Bruun, T., Vernazza, P., Collins, S., Degen, O., … Lundgren, J. (2019). Risk of HIV transmission through condomless sex in serodifferent gay couples with the HIV-positive partner taking suppressive antiretroviral therapy (PARTNER): Final results of a multicentre, prospective, observational study. Lancet, 393(10189), 2428–2438. https://doi.org/10.1016/s0140-6736(19)30418-0.

    Article  PubMed  PubMed Central  Google Scholar 

  81. Rodger, A., Cambiano, V., Bruun, T., Vernazza, P., Collins, S., van Lunzen, J., … Beloukas, A. (2016). Sexual activity without condoms and risk of HIV transmission in serodifferent couples when the HIV-positive partner is using suppressive antiretroviral therapy. Journal of the American Medical Association, 316(2), 171–181. https://doi.org/10.1001/jama.2016.5148.

    Article  PubMed  Google Scholar 

  82. Rodrigo, C., & Rajapakse, S. (2010). HIV, poverty and women. International Health, 2(1), 9–16. https://doi.org/10.1016/j.inhe.2009.12.003.

    Article  PubMed  Google Scholar 

  83. Rouleau, G., Côté, J., & Cara, C. (2012). Disclosure experience in a convenience sample of quebec-born women living with HIV: A phenomenological study. BMC Women’s Health, 12(1), 37. https://doi.org/10.1186/1472-6874-12-37.

    Article  PubMed  PubMed Central  Google Scholar 

  84. Rowlands, S., & Amy, J. J. (2018). Non-consensual sterilization of women living with HIV. International Journal of STD and AIDS, 29(9), 917–924. https://doi.org/10.1177/0956462418758116.

    Article  PubMed  Google Scholar 

  85. Rozmovits, L., & Ziebland, S. (2004). What do patients with prostate or breast cancer want from an Internet site? A qualitative study of information needs. Patient Education and Counseling, 53(1), 57–64. https://doi.org/10.1016/s0738-3991(03)00116-2.

    Article  PubMed  Google Scholar 

  86. Salters, K., Loutfy, M., de Pokomandy, A., Money, D., Pick, N., Wang, L., … Conway, T. (2017). Pregnancy incidence and intention after HIV diagnosis among women living with HIV in Canada. PLoS ONE, 12(7), e0180524. https://doi.org/10.1371/journal.pone.0180524.

    Article  PubMed  PubMed Central  Google Scholar 

  87. Sanchez, M., Webster, K., Nicholson, V., Chown, S., Nyoni, P., & Carter, A. (2018) Sister Power. In Positive Gathering Conference 2018, Vancouver, BC.

  88. Sanchez, M., Webster, K., Salters, K., Kaida, A., & Carter, A. (2017) Life, love and lunch: A pleasureful pre-positive gathering for women. In Positive Gathering Conference, Vancouver, BC.

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

    Article  PubMed  Google Scholar 

  90. Siegel, K., Schrimshaw, E., & Lekas, H.-M. (2006). Diminished sexual activity, interest, and feelings of attractiveness among HIV-infected women in two eras of the AIDS epidemic. Archives of Sexual Behavior, 35(4), 437–449. https://doi.org/10.1007/s10508-006-9043-5.

    Article  PubMed  PubMed Central  Google Scholar 

  91. Sillence, E., Briggs, P., & Herxheimer, A. (2019). Personal experiences matter: What patients think about hypertension information online. Health Information on the Internet, 42, 3–5. https://doi.org/10.1093/fampra/cmh202.

    Article  Google Scholar 

  92. Sultana, F. (2007). Reflexivity, positionality and participatory ethics: Negotiating fieldwork dilemmas in international research. ACME, 6, 374–385.

    Google Scholar 

  93. Takyi, B. K. (2003). Religion and women’s health in Ghana: insights into HIV/AIDs preventive and protective behavior. Social Science and Medicine, 56(6), 1221–1234. https://doi.org/10.1016/s0277-9536(02)00122-3.

    Article  PubMed  Google Scholar 

  94. Tan, R. K. J., Lim, J. M., & Chan, J. K. W. (2020). “Not a walking piece of meat with disease”: Meanings of becoming undetectable among HIV-positive gay, bisexual and other men who have sex with men in the U = Uera. AIDS Care, 32(3), 325–329. https://doi.org/10.1080/09540121.2019.1668534.

    Article  PubMed  Google Scholar 

  95. Taylor, T. N., Munoz-Plaza, C. E., Goparaju, L., Martinez, O., Holman, S., Minkoff, H. L., … Golub, E. T. (2016). “The pleasure is better as I’ve gotten older”: Sexual health, sexuality, and sexual risk behaviors among older women living with HIV. Archives of Sexual Behavior, 46(4), 1137–1150. https://doi.org/10.1007/s10508-016-0751-1.

    Article  PubMed  PubMed Central  Google Scholar 

  96. Terrence Higgins Trust. (2019). Women and HIV: Invisible no longer. https://www.tht.org.uk/sites/default/files/2018-04/women-and-HIV_summary_final.pdf.

  97. Treloar, C., Pienaar, K., Dilkes-Frayne, E., & Fraser, S. (2019). Lives of substance: A mixed-method evaluation of a public information website on addiction experiences. Drugs: Education Prevention and Policy, 26(2), 140–147. https://doi.org/10.1080/09687637.2017.1397602.

    Article  Google Scholar 

  98. UNAIDS. (2019). Global HIV & AIDS statistics2019 fact sheet. https://www.unaids.org/en/resources/fact-sheet.

  99. Vanley, G. T., Huberman, R., & Lufkin, R. B. (1982). Atypical Pneumocystis carinii pneumonia in homosexual men with unusual immunodeficiency. American Journal of Roentgenology, 138(6), 1037–1041.

    Article  Google Scholar 

  100. Vernazza, P., & Bernard, E. (2016). HIV is not transmitted under fully suppressive therapy: The Swiss Statement—eight years later. Swiss Medical Weekly, 146(w14246), 1–6. https://doi.org/10.4414/smw.2016.14246.

    Article  Google Scholar 

  101. Vernazza, P., Hirschel, B., Bernasconi, E., & Flepp, M. (2008). Les personnes séropositives ne souffrant d’aucune autre MST et suivant un traitement antirétroviral efficace ne transmettent pas le VIH par voie sexuelle. Bulletin des Médecins Suisses, 89(5), 165–169.

    Article  Google Scholar 

  102. Welbourn, A. (2013). Desires denied: Sexual pleasure in the context of HIV. In S. Jolly, A. Cornwall, & K. Hawkins (Eds.), Women, sexuality and the political power of pleasure (pp. 142–161). London: Zed Books.

    Google Scholar 

  103. Wessman, M., Thorsteinsson, K., Storgaard, M., Rönsholt, F. F., Johansen, I. S., Pedersen, G., … Lebech, A.-M. (2017). HIV disclosure and stigma among women living with HIV in Denmark. Journal of Virus Eradication, 3(3), 140–144.

    Article  Google Scholar 

  104. Whitbread, J. L. (2016). Space dates. Retrieved July 29 from http://jessicawhitbread.com/project/space-dates/.

  105. Whitbread, J. (2017). Love positive women. Retrieved February 3 from http://jessicawhitbread.com/project/love-positive-women/.

  106. Whitbread, J., Mitchell, A., & McClelland, A. (2011). Fuck positive women. Retrieved February 3 from http://nomorepotlucks.org/site/fuck-positive-women/.

  107. Yassi, A., Spiegel, J. B., Lockhart, K., Fels, L., Boydell, K., & Marcuse, J. (2016). Ethics in community-university-artist partnered research: Tensions, contradictions and gaps identified in an ‘Arts for Social Change’ project. Journal of Academic Ethics, 14, 199–220. https://doi.org/10.1007/s10805-016-9257-7.

    Article  PubMed  PubMed Central  Google Scholar 

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Acknowledgements

We thank many friends, colleagues, and organizations for engaging with us in sex research and for informing our knowledge translation process. We also thank our website consultant (Fernando Prado) and our inaugural feature writers for sharing their stories to affect change: Gina Dos Santos (South Africa), Marnina Miller (United States), Marama (New Zealand), Juno Roche (United Kingdom/Spain), S. T. Wynne (Canada), and Just Stash (Kenya). Finally, we honor the global community of women living with HIV, including those who have gone before us and those who stand with us today. We dedicate this work to you.

Funding

Life and Love with HIV (www.lifeandlovewithhiv.ca) was supported by a Student Social Innovation Seed Grant from Simon Fraser University Radius and Embark, a Knowledge Synthesis Grant from the Canadian Institutes of Health Research (CIHR, 147983), a Reach Award from the Michael Smith Foundation for Health Research and the British Columbia Centre for Excellence in HIV/AIDS, and grants to nurture community-engaged scholarship and impact from Simon Fraser University’s Community Engagement Initiative and Community-Engaged Research Initiative.

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Correspondence to Allison Carter.

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The Life and Love with HIV blog was exempt from ethical review requirements. The process evaluation of website traffic was approved by the Research Ethics Board of Simon Fraser University (H20-00318).

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Carter, A., Anam, F., Sanchez, M. et al. Radical Pleasure: Feminist Digital Storytelling by, with, and for Women Living with HIV. Arch Sex Behav 50, 83–103 (2021). https://doi.org/10.1007/s10508-020-01822-8

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Keywords

  • Women
  • Sexuality
  • Relationships
  • Feminism
  • Knowledge translation
  • HIV