Getting to the Heart of Stigma across the HIV Continuum of Care

"Getting to the heart of stigma requires engagement across methods, conceptual frameworks and impacted communities to understand what factors are most important to translate research to action to advance human rights and equity." - from the Supplement's opening Editorial

HIV-related stigma - the devaluing, mistreatment, and constrained access to power and opportunities experienced by people living with and associated with HIV - inhibits the HIV response and violates human rights. This Journal of the International AIDS Society (JIAS) Supplement aims to draw attention to HIV-related and intersecting stigma and discrimination across the HIV prevention and care continuum. While shedding light on stigma processes and their harmful impacts, contributors also look at the ways in which people exert individual and collective agency to resist and dismantle stigma and to act with solidarity.

The open-access articles in this Supplement offer insight into a range of health conditions, social identities, social determinants of health, and life stages that shape lived experiences of stigma. It also explores the wide-ranging methodologies, including qualitative, quantitative, systems mapping, and systematic reviews, that the articles' authors drew on to generate analyses of the complexity of stigma. For instance, a partnership model between researchers and marginalised groups in the co-creation of knowledge is increasingly influencing stigma research and is reflected in some of the studies in this Supplement. Such approaches reportedly foster knowledge production for greater impact and social change that are led by community researchers and/or more grounded in lived experiences.

One finding to emerge from the collection is that peer support and community leadership in challenging and researching stigma hold promise. For example, Brown et al. present findings from a study adopting a systems perspective to understand how to tackle structural stigma via the meaningful involvement of people with HIV, while highlighting the challenges in demonstrating peer leadership from people living with HIV.

Contents include:

• Editorial: What will it take to get to the heart of stigma in the context of HIV? - by Lucy Stackpool-Moore, Carmen H. Logie, Allanise Cloete, and Finn Reygan - "...[argues that] The time is now to renew and innovate responses to HIV-related stigma, including taking the steps needed to ensure an enabling global policy environment..."
• Research Article: Tackling structural stigma: a systems perspective - by Graham Brown, Daniel Reeders, Aaron Cogle, Brent Allan, Chris Howard, John Rule, Susan Chong, and Deborah Gleeson - "...present[s] findings from a study adopting a systems perspective to understand how to tackle structural stigma via the Meaningful Involvement of People with HIV/AIDS (MIPA), while highlighting the challenges in demonstrating peer leadership from people living with HIV (PLHIV)..."
• Commentary: The ethical imperative to reduce HIV stigma through community-engaged, status-neutral interventions designed with and for transgender women of colour in the United States - by Kristi E. Gamarel, Greg Rebchook, Breonna M. McCree, Laura Jadwin-Cakmak, Maureen Connolly, Lilianna A. Reyes, and Jae M. Sevelius - "...call[s] upon funders to develop mechanisms that support the development and testing of HIV status-neutral interventions to reduce HIV stigma and support community building, thereby increasing the possibility of fully realizing the benefits of biomedical HIV prevention and treatment technologies for all..."
• Short Report: A qualitative study of how stigma influences HIV services for transgender men and women in Nigeria - by Waimar Tun, Julie Pulerwitz, Elizabeth Shoyemi, Anita Fernandez, Adepeju Adeniran, Franklin Ejiogu, Olusegun Sangowawa, Krista Granger, Osasuyi Dirisu, and Adebola A. Adedimeji - "...highlights how stigma impedes access to appropriate HIV services for transgender men and women, which can have a negative impact along the HIV care continuum..."
• Research Article: Telling the story of intersectional stigma in HIV-associated Kaposi's sarcoma in western Kenya: a convergent mixed-methods approach - by Sigrid Collier, Rhea Singh, Aggrey Semeere, Helen Byakwaga, Miriam Laker-Oketta, Devon E. McMahon, Linda Chemtai, Merridy Grant, Lisa Butler, Laura Bogart, Ingrid V. Bassett, Samson Kiprono, Toby Maurer, Jeffrey Martin, Naftali Busakhala, and Esther E. Freeman - "...characterize[s] the intersectionality of HIV-related, cancer-related and skin disease-related stigma in people living with HIV and KS [Kaposi's sarcoma]..."
• Research Article: The association between HIV stigma and HIV incidence in the context of universal testing and treatment: analysis of data from the HPTN 071 (PopART) trial in Zambia and South Africa - by James R. Hargreaves, Triantafyllos Pliakas, Graeme Hoddinott, Tila Mainga, Constance Mubekapi-Musadaidzwa, Deborah Donnell, Ethan Wilson, Estelle Piwowar-Manning, Yaw Agyei, Nomtha F. Bell-Mandla, Rory Dunbar, Ab Schaap, David Macleod, Sian Floyd, Peter Bock, Sarah Fidler, Janet Seeley, Anne Stangl, Virginia Bond, Helen Ayles, Richard J. Hayes, and the HPTN 071 (PopART) study team - "...investigate[s] the association between individual and community-level measures of HIV stigma and HIV incidence within the 21 communities participating in the HPTN (071) PopART trial in Zambia and South Africa..."
• Research Article: Adaptation and psychometric evaluation of a scale to measure oral pre-exposure prophylaxis-related stigma among key and vulnerable populations in Kenya - by Kaitlyn Atkins, Lena Kan, Abednego Musau, Jason Reed, Daniel Were, and Diwakar Mohan - "...aim[s] to psychometrically evaluate a PrEP-related stigma scale for use among key and vulnerable populations in the context of a Kenya national PrEP programme..."
• Research Article: "I was still very young": agency, stigma and HIV care strategies at school, baseline results of a qualitative study among youth in rural Kenya and Uganda - by Jason Johnson-Peretz, Sarah Lebu, Cecilia Akatukwasa, Monica Getahun, Theodore Ruel, Joi Lee, James Ayieko, Florence Mwangwa, Lawrence Owino, Anjeline Onyango, Irene Maeri, Frederick Atwine, Edwin D. Charlebois, Elizabeth A. Bukusi, Moses R. Kamya, Diane V. Havlir, and Carol S. Camlin - "...explore[s] the implications of school-based stigma and disclosure on the development of agency during a critical life stage in rural Kenya and Uganda..."
• Short Report: Does resource insecurity drive HIV-related stigma? Associations between food and housing insecurity with HIV-related stigma in cohort of women living with HIV in Canada - by Carmen H. Logie, Nina Sokolovic, Mina Kazemi, Shaz Islam, Peggy Frank, Rebecca Gormley, Angela Kaida, Alexandra de Pokomandy, Mona Loutfy, and the CHIWOS Research Team - "...estimate[s] the associations between food and housing insecurity with HIV-related stigma among women living with HIV in Canada..."
• Research Article: A pretest-posttest design to assess the effectiveness of an intervention to reduce HIV-related stigma and discrimination in healthcare settings in Vietnam - by Todd M. Pollack, Hao Thi Duong, Dang Thi Nhat Vinh, Do Thi Phuong, Do Huu Thuy, Vo Thi Tuyet Nhung, Nguyen Kieu Uyen, Vuong The Linh, Nguyen Van Truong, Kim Anh Le Ai, Nguyen Thi Ninh, Asia Nguyen, Hoang Dinh Canh, and Lisa A. Cosimi - "...[explains how] A multi-pronged facility-level intervention was successful at reducing healthcare-associated HIV-related stigma in Vietnam..."
• Research Article: Using a mixed-methods approach to adapt an HIV stigma reduction to address intersectional stigma faced by men who have sex with men in Ghana - by Laura Nyblade, Melissa A. Stockton, Khalida Saalim, Gamji Rabiu Abu-Ba'are, Sue Clay, Mutale Chonta, Debbie Dada, Emmanuel Mankattah, Richard Vormawor, Patrick Appiah, Francis Boakye, Ransford Akrong, Adom Manu, Emma Gyamerah, DeAnne Turner, Karan Sharma, Kwasi Torpey, and LaRon E. Nelson - "...describes the process and results of adapting an evidence-based HIV stigma-reduction HCW [health care worker] training curriculum to address HIV, same-sex and gender non-conformity stigma among HCWs in the Greater Accra and Ashanti regions, Ghana..."
• Viewpoint: Community-led monitoring: a voice for key populations in Zimbabwe - by Tatenda Makoni, Gilton Kadziyanhike, Clarence Mademutsa, Martha Mlambo, and Kalonde Malama - "...describe[s] an example from Zimbabwe where a community treatment observatory model has been implemented to systematically provide services and track results for people living with HIV and key populations..."
• Review: Frameworks and measures for HIV-related internalized stigma, stigma and discrimination in healthcare and in laws and policies: a systematic review - by Laura Ferguson, Sofia Gruskin, Maria Bolshakova, Sachi Yagyu, Ning Fu, Nicky Cabrera, Mary Rozelle, Kasoka Kasoka, Tessa Oraro-Lawrence, Lucy Stackpool-Moore, Aneesa Motala, and Susanne Hempel - "...[presents] a systematic review to identify frameworks and measures aiming to understand or assess internalized stigma, stigma and discrimination in healthcare, and in law and policy..."
• Commentary: Recognizing and disrupting stigma in implementation of HIV prevention and care: a call to research and action - by Sarit A. Golub and Rachel A. Fikslin - "...argues for the importance of analysing and disrupting the way in which stigma may be (intentionally or unintentionally) enacted and sustained within HIV service implementation..."