‘HIV made me fabulous’: a qualitative analysis of embodied storytelling in film to address stigma, further understandings of U=U and advance gender equity
Azra Bhanji A , Angela Kaida A B , Juno Roche A , Edmond Kilpatrick A , Florence Anam C , Valerie Nicholson A , Marvelous Muchenje D , Lori A. Brotto B E and Allison Carter
A F G *
+ Author Affiliations
- Author Affiliations
A Faculty of Health Sciences, Simon Fraser University, Burnaby, BC, Canada.
B Women’s Health Research Institute, Vancouver, BC, Canada.
C Global Network of People Living with HIV, Nairobi, Kenya.
D Factor-Inwentash Faculty of Social Work, University of Toronto, Toronto, ON, Canada.
E Department of Obstetrics and Gynecology, Faculty of Medicine, University of British Columbia, Vancouver, BC, Canada.
F Kirby Institute, Faculty of Medicine and Health, UNSW Sydney, Sydney, NSW, Australia.
G Australian Human Rights Institute, Faculty of Medicine and Health, UNSW Sydney, Sydney, NSW, Australia.
Sexual Health - https://doi.org/10.1071/SH23052
Submitted: 7 March 2023 Accepted: 29 May 2023 Published online: 22 June 2023
© 2023 The Author(s) (or their employer(s)). Published by CSIRO Publishing. This is an open access article distributed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND)
Abstract
Background: Even with the Undetectable equals Untransmittable campaign (U=U) campaign, women living with HIV continue to experience intersecting forms of stigma. We explored how the somatic experiences of viewing a film about U=U and women could help individuals gain deeper understandings of HIV and alter learned prejudices.
Methods: HIV Made Me Fabulous is a film that utilises embodied storytelling to tell the story of a trans woman living through social and historical traumas of HIV. Four online film screenings and focus group discussions took place between June 2020 and June 2021, with participants attending from Canada, Australia, South Africa, Kenya, Zimbabwe and India. Two sessions were held with women living with HIV (n = 16) and two with HIV-negative individuals (n = 12). Transcripts were analysed via thematic analysis using Lafrenière and Cox’s framework to assess its impact.
Results: Participants experienced strong, diverse emotional responses and sometimes physical effects from viewing the film. These somatic experiences furthered engagement with key messages in the film, including U=U, intersectional identities, and impacts of patriarchal systems. Women living with HIV commented on unique gendered risks experienced during disclosure, and the pressures of reaching an undetectable viral load. Women also commented how the film resulted in deeper reflection of their deservingness of pleasure. Regardless of HIV status, participants expressed motivation towards influencing change that included addressing biases and sharing U=U with others.
Conclusions: Embodied storytelling in film is an effective method to counter both intra- and inter-personal HIV-related stigma by provoking responses that enhance compassion for oneself and others.
Keywords: embodied storytelling, film, HIV, knowledge translation, qualitative research, sexuality, stigma, U=U, women.
References
[1] Prevention Access Campaign. About – introduction. Prevention Access Campaign. 2023. Available at https://preventionaccess.org/about-introduction/[2] Agaku I, Nkosi L, Gwar J, Tsafa T. A cross-sectional analysis of U=U as a potential educative Intervention to mitigate HIV stigma among youth living with HIV in South Africa. Pan Afr Med J 2022; 41 248
| A cross-sectional analysis of U=U as a potential educative Intervention to mitigate HIV stigma among youth living with HIV in South Africa.Crossref | GoogleScholarGoogle Scholar |
[3] Persson A. ‘The world has changed’: pharmaceutical citizenship and the reimagining of serodiscordant sexuality among couples with mixed HIV status in Australia. Soc Health Illn 2016; 38 380–395.
| ‘The world has changed’: pharmaceutical citizenship and the reimagining of serodiscordant sexuality among couples with mixed HIV status in Australia.Crossref | GoogleScholarGoogle Scholar |
[4] Logie CH, James L, Tharao W, Loutfy MR. HIV, gender, race, sexual orientation, and sex work: a qualitative study of intersectional stigma experienced by HIV-positive women in Ontario, Canada. PLoS Med 2011; 8 e1001124
| HIV, gender, race, sexual orientation, and sex work: a qualitative study of intersectional stigma experienced by HIV-positive women in Ontario, Canada.Crossref | GoogleScholarGoogle Scholar |
[5] Stevenson J. Beyond the biomedical: HIV as a barrier to intimacy for older women living with HIV in the United Kingdom. In: Henrickson M, Charles C, Ganesh S, Giwa S, Kwok KD, Semigina T, editors. HIV, sex and sexuality in later life. Bristol, UK: Policy Press; 2023. pp. 28–45.
[6] Chen C, Baral S, Comins CA, Mcingana M, Wang L, Phetlhu DR, et al. HIV- and sex work-related stigmas and quality of life of female sex workers living with HIV in South Africa: a cross-sectional study. BMC Infect Dis 2022; 22 910
| HIV- and sex work-related stigmas and quality of life of female sex workers living with HIV in South Africa: a cross-sectional study.Crossref | GoogleScholarGoogle Scholar |
[7] Logie CH, Jenkinson JIR, Earnshaw V, Tharao W, Loutfy MR. A structural equation model of HIV-related stigma, racial discrimination, housing insecurity and wellbeing among African and Caribbean Black women living with HIV in Ontario, Canada. PLoS ONE 2016; 11 e0162826
| A structural equation model of HIV-related stigma, racial discrimination, housing insecurity and wellbeing among African and Caribbean Black women living with HIV in Ontario, Canada.Crossref | GoogleScholarGoogle Scholar |
[8] Hatzenbuehler ML, Nolen-Hoeksema S, Dovidio J. How does stigma “get under the skin”? The mediating role of emotion regulation. Psychol Sci 2009; 20 1282–289.
| How does stigma “get under the skin”? The mediating role of emotion regulation.Crossref | GoogleScholarGoogle Scholar |
[9] Kontomanolis EN, Michalopoulos S, Gkasdaris G, Fasoulakis Z. The social stigma of HIV–AIDS: society’s role. HIV/AIDS 2017; 9 111–118.
| The social stigma of HIV–AIDS: society’s role.Crossref | GoogleScholarGoogle Scholar |
[10] Mahajan AP, Sayles JN, Patel VA, Remien RH, Sawires SR, Ortiz DJ, et al. Stigma in the HIV/AIDS epidemic: a review of the literature and recommendations for the way forward. AIDS 2008; 22 S67–S79.
| Stigma in the HIV/AIDS epidemic: a review of the literature and recommendations for the way forward.Crossref | GoogleScholarGoogle Scholar |
[11] Parker R, Aggleton P. HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action. Soc Sci Med 2003; 57 13–24.
| HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action.Crossref | GoogleScholarGoogle Scholar |
[12] Earnshaw VA, Smith LR, Chaudoir SR, Amico KR, Copenhaver MM. HIV stigma mechanisms and well-being among PLWH: a test of the HIV stigma framework. AIDS Behav 2013; 17 1785–1795.
| HIV stigma mechanisms and well-being among PLWH: a test of the HIV stigma framework.Crossref | GoogleScholarGoogle Scholar |
[13] Feyissa GT, Abebe L, Girma E, Woldie M. Stigma and discrimination against people living with HIV by healthcare providers, Southwest Ethiopia. BMC Public Health 2012; 12 522
| Stigma and discrimination against people living with HIV by healthcare providers, Southwest Ethiopia.Crossref | GoogleScholarGoogle Scholar |
[14] Earnshaw VA, Chaudoir SR. From conceptualizing to measuring HIV stigma: a review of HIV stigma mechanism measures. AIDS Behav 2009; 13 1160–1177.
| From conceptualizing to measuring HIV stigma: a review of HIV stigma mechanism measures.Crossref | GoogleScholarGoogle Scholar |
[15] Carter A, Greene S, Money D, Sanchez M, Webster K, Nicholson V, et al. The problematization of sexuality among women living with HIV and a new feminist approach for understanding and enhancing women’s sexual lives. Sex Roles 2017; 77 779–800.
| The problematization of sexuality among women living with HIV and a new feminist approach for understanding and enhancing women’s sexual lives.Crossref | GoogleScholarGoogle Scholar |
[16] Kaida A, Carter A, de Pokomandy A, Patterson S, Proulx-Boucher K, Nohpal A, et al. Sexual inactivity and sexual satisfaction among women living with HIV in Canada in the context of growing social, legal and public health surveillance. J Int AIDS Soc 2015; 18 20284
| Sexual inactivity and sexual satisfaction among women living with HIV in Canada in the context of growing social, legal and public health surveillance.Crossref | GoogleScholarGoogle Scholar |
[17] Logie CH, Wang Y, Lacombe-Duncan A, Wagner AC, Kaida A, Conway T, et al. HIV-related stigma, racial discrimination, and gender discrimination: pathways to physical and mental health-related quality of life among a national cohort of women living with HIV. Prev Med 2018; 107 36–44.
| HIV-related stigma, racial discrimination, and gender discrimination: pathways to physical and mental health-related quality of life among a national cohort of women living with HIV.Crossref | GoogleScholarGoogle Scholar |
[18] Patterson S, Cescon A, Samji H, Chan K, Zhang W, Raboud J, et al. Life expectancy of HIV-positive individuals on combination antiretroviral therapy in Canada. BMC Infect Dis 2015; 15 274
| Life expectancy of HIV-positive individuals on combination antiretroviral therapy in Canada.Crossref | GoogleScholarGoogle Scholar |
[19] Martel K, Conley J. Breastfeeding and HIV in the era of Undetectable=Untransmittable: research, policy, and lived experiences. Obstet Gynecol 2020; 135(Suppl 1) 9S
| Breastfeeding and HIV in the era of Undetectable=Untransmittable: research, policy, and lived experiences.Crossref | GoogleScholarGoogle Scholar |
[20] Tan RKJ, Lim JM, Chan JKW. Is “undetectable=untransmissible” good public health messaging? AMA J Ethics 2021; 23 E418–422.
| Is “undetectable=untransmissible” good public health messaging?Crossref | GoogleScholarGoogle Scholar |
[21] Gurevich M, Mathieson CM, Bower J, Dhayanandhan B. Disciplining bodies, desires and subjectivities: sexuality and HIV-positive women. Fem Psychol 2007; 17 9–38.
| Disciplining bodies, desires and subjectivities: sexuality and HIV-positive women.Crossref | GoogleScholarGoogle Scholar |
[22] Logie CH, Perez-Brumer A, Parker R. The contested global politics of pleasure and danger: sexuality, gender, health and human rights. Glob Public Health 2021; 16 651–663.
| The contested global politics of pleasure and danger: sexuality, gender, health and human rights.Crossref | GoogleScholarGoogle Scholar |
[23] Heijnders M, Van Der Meij S. The fight against stigma: an overview of stigma-reduction strategies and interventions. Psychol Health Med 2006; 11 353–363.
| The fight against stigma: an overview of stigma-reduction strategies and interventions.Crossref | GoogleScholarGoogle Scholar |
[24] Moyer-Gusé E. Toward a theory of entertainment persuasion: explaining the persuasive effects of entertainment-education messages. Commun Theory 2008; 18 407–425.
| Toward a theory of entertainment persuasion: explaining the persuasive effects of entertainment-education messages.Crossref | GoogleScholarGoogle Scholar |
[25] Baumann SE, Merante M, Folb BL, Burke JG. Is film as a research tool the future of public health? A review of study designs, opportunities, and challenges. Qual Health Res 2020; 30 250–257.
| Is film as a research tool the future of public health? A review of study designs, opportunities, and challenges.Crossref | GoogleScholarGoogle Scholar |
[26] Ottoni CA, Sims-Gould J, McKay HA. Video for knowledge translation: engaging older adults in social and physical activity. Can J Aging 2020; 39 31–41.
| Video for knowledge translation: engaging older adults in social and physical activity.Crossref | GoogleScholarGoogle Scholar |
[27] Lapinski MK, Nwulu P. Can a short film impact HIV-related risk and stigma perceptions? Results from an experiment in Abuja, Nigeria. Health Commun 2008; 23 403–412.
| Can a short film impact HIV-related risk and stigma perceptions? Results from an experiment in Abuja, Nigeria.Crossref | GoogleScholarGoogle Scholar |
[28] Kombo B, Sariola S, Gichuru E, Molyneux S, Sanders EJ, van der Elst E. “Facing our fears”: using facilitated film viewings to engage communities in HIV research involving MSM in Kenya. Cogent Med 2017; 4 1330728
| “Facing our fears”: using facilitated film viewings to engage communities in HIV research involving MSM in Kenya.Crossref | GoogleScholarGoogle Scholar |
[29] Kilpatrick E. Art as a means to locate and disrupt embodied prejudice with emotional sensations on the body: the artful and transformative telling of stories of stigma and HIV. Thesis, Simon Fraser University; 2018.
[30] Osei-Kofi N. The emancipatory potential of arts-based research for social justice. Equity Excell Educ 2013; 46 135–149.
| The emancipatory potential of arts-based research for social justice.Crossref | GoogleScholarGoogle Scholar |
[31] Life and Love with HIV. HIV made me fabulous film premiere with CATIE and GNP+ (English Version) [web streaming video]. YouTube. 2021. Available at https://www.youtube.com/watch?v=2-h2B55qYu0
[32] Carter A, Osborne Z, Bhanji A, Kilpatrick E, Roche J, Nicholson V, et al. HIV made me fabulous: film facilitation guide. 2021. Available at https://www.lifeandlovewithhiv.ca/wp-content/uploads/2021/11/HIV-Made-Me-Fabulous-Discussion-Guide_v1-Colour-Spreads.pdf
[33] Lafrenière D, Cox SM. ‘If you can call it a poem’: toward a framework for the assessment of arts-based works. Qual Res 2013; 13 318–336.
| ‘If you can call it a poem’: toward a framework for the assessment of arts-based works.Crossref | GoogleScholarGoogle Scholar |
[34] Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology 2006; 3 77–101.
| Using thematic analysis in psychology.Crossref | GoogleScholarGoogle Scholar |
[35] Braun V, Clarke V. One size fits all? What counts as quality practice in (reflexive) thematic analysis? Qual Res Psychol 2021; 18 328–352.
| One size fits all? What counts as quality practice in (reflexive) thematic analysis?Crossref | GoogleScholarGoogle Scholar |
[36] Kilpatrick E. Generating emotions out of movement and posture or merely the sensations of emotion: a performative inquiry. Theatre Dance Perform Train 2017; 8 254–267.
| Generating emotions out of movement and posture or merely the sensations of emotion: a performative inquiry.Crossref | GoogleScholarGoogle Scholar |
[37] Supreme Court of Canada. R. v. Mabior. 2 SCR 584. 2012. Available at https://scc-csc.lexum.com/scc-csc/scc-csc/en/item/10008/index.do [cited 14 May 2023].
[38] Patterson SE, Milloy M-J, Ogilvie G, Greene S, Nicholson V, Vonn M, et al. The impact of criminalization of HIV non-disclosure on the healthcare engagement of women living with HIV in Canada: a comprehensive review of the evidence. J Int AIDS Soc 2015; 18 20572
| The impact of criminalization of HIV non-disclosure on the healthcare engagement of women living with HIV in Canada: a comprehensive review of the evidence.Crossref | GoogleScholarGoogle Scholar |
[39] Government of Canada. Reforming the criminal law regarding HIV non-disclosure – online public consultation. 2023. Available at https://www.justice.gc.ca/eng/cons/hiv-vih/index.html
[40] Almeida OFX, Sousa N. Leveraging neuroscience to fight stigma around mental health. Front Behav Neurosci 2022; 15 812184
| Leveraging neuroscience to fight stigma around mental health.Crossref | GoogleScholarGoogle Scholar |
[41] Leahy RL. Introduction: emotional schemas and emotional schema therapy. Int J Cogn Ther 2019; 12 1–4.
| Introduction: emotional schemas and emotional schema therapy.Crossref | GoogleScholarGoogle Scholar |
[42] Izard CE. Emotion theory and research: highlights, unanswered questions, and emerging issues. Ann Rev Psychol 2009; 60 1–25.
| Emotion theory and research: highlights, unanswered questions, and emerging issues.Crossref | GoogleScholarGoogle Scholar |
[43] Chaudoir SR, Earnshaw VA, Andel S. “Discredited” versus “discreditable”: understanding how shared and unique stigma mechanisms affect psychological and physical health disparities. Basic and Applied Social Psychology 2013; 35 75–87.
| “Discredited” versus “discreditable”: understanding how shared and unique stigma mechanisms affect psychological and physical health disparities.Crossref | GoogleScholarGoogle Scholar |
[44] Gentsch A, Kuehn E. Clinical manifestations of body memories: the impact of past bodily experiences on mental Health. Brain Sci 2022; 12 594
| Clinical manifestations of body memories: the impact of past bodily experiences on mental Health.Crossref | GoogleScholarGoogle Scholar |
[45] Blumenfeld-Jones DS. The artistic process and arts-based research. Qual Inq 2016; 22 322–333.
| The artistic process and arts-based research.Crossref | GoogleScholarGoogle Scholar |
[46] Douglas K, Carless D. Engaging with arts-based research: a story in three parts. Qual Res Psychol 2018; 15 156–172.
| Engaging with arts-based research: a story in three parts.Crossref | GoogleScholarGoogle Scholar |
[47] Pulerwitz J, Mathur S, Woznica D. How empowered are girls/young women in their sexual relationships? Relationship power, HIV risk, and partner violence in Kenya. PLoS ONE 2018; 13 e0199733
| How empowered are girls/young women in their sexual relationships? Relationship power, HIV risk, and partner violence in Kenya.Crossref | GoogleScholarGoogle Scholar |
[48] Calabrese SK, Mayer KH. Stigma impedes HIV prevention by stifling patient–provider communication about U = U. J Int AIDS Soc 2020; 23 e25559
| Stigma impedes HIV prevention by stifling patient–provider communication about U = U.Crossref | GoogleScholarGoogle Scholar |
[49] Ebor M, Murray A, Gaul Z, Sutton M. HIV awareness and knowledge among viewers of a documentary film about HIV among racial- or ethnic-minority older adults. Health Soc Work 2015; 40 217–224.
| HIV awareness and knowledge among viewers of a documentary film about HIV among racial- or ethnic-minority older adults.Crossref | GoogleScholarGoogle Scholar |
[50] Keemink JR, Sharp RJ, Dargan AK, Forder JE. Reflections on the use of synchronous online focus groups in social care research. Int J Qual Methods 2022; 21 160940692210953
| Reflections on the use of synchronous online focus groups in social care research.Crossref | GoogleScholarGoogle Scholar |
