Why increasing availability of ART is not enough: a rapid, community-based study on how HIV-related stigma impacts engagement to care in rural South Africa

Treves-Kagan, Sarah; Steward, Wayne T.; Ntswane, Lebogang; Haller, Robin; Gilvydis, Jennifer M.; Gulati, Harnik; Barnhart, Scott; Lippman, Sheri A.

doi:10.1186/s12889-016-2753-2

Cited by 153HIV/AIDS Research and InterventionsHIV/AIDS Impact and ResponsesHIV, Drug Use, Sexual Risk

Why increasing availability of ART is not enough: a rapid, community-based study on how HIV-related stigma impacts engagement to care in rural South Africa

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Treves-Kagan, Sarah, Steward, Wayne T., Ntswane, Lebogang, Haller, Robin, Gilvydis, Jennifer M., Gulati, Harnik, Barnhart, Scott, Lippman, Sheri A.·2015·BMC Public Health

DOI 10.1186/s12889-016-2753-2PMC PMC4730651

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Abstract

BACKGROUND: Stigma is a known barrier to HIV testing and care. Because access to antiretroviral therapy reduces overt illness and mortality, some scholars theorized that HIV-related stigma would decrease as treatment availability increased. However, the association between ART accessibility and stigma has not been as straightforward as originally predicted. METHODS: We conducted a "situational analysis"--a rapid, community-based qualitative assessment to inform a combination HIV prevention program in high prevalence communities. In the context of this community-based research, we conducted semi-structured interviews and focus groups with 684 individuals in four low-resource sub-districts in North West Province, South Africa. In addition to using this data to inform programming, we examined the impact of stigma on the uptake of services. RESULTS: Findings suggested that anticipated stigma remains a barrier to care. Although participants reported less enacted stigma, or hostility toward people living with HIV, they also felt that HIV remains synonymous with promiscuity and infidelity. Participants described community members taking steps to avoid being identified as HIV-positive, including avoiding healthcare facilities entirely, using traditional healers, or paying for private doctors. Such behaviors led to delays in testing and accessing care, and problems adhering to medications, especially for men and youth with no other health condition that could plausibly account for their utilization of medical services. CONCLUSIONS: We conclude that providing access to ART alone will not end HIV-related stigma. Instead, individuals will remain hesitant to seek care as long as they fear that doing so will lead to prejudice and discrimination. It is critical to combat this trend by increasing cultural acceptance of being seropositive, integrating HIV care into general primary care and normalizing men and youths' accessing health care.

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Local notions of masculinity disfavor seeking help because it is thought to be a sign of weakness.
“Local notions of masculinity disfavor seeking help because it is thought to be a sign of weakness [36, 37].”
From Echoes of old HIV paradigms: reassessing the problem of engaging men in HIV testing and treatment through women’s perspectives (2017) · cites this paper as [36]
One study in South Africa found that a man who is seen seeking care at a health facility could lead to gossip about HIV status, since men do not have the same reasons as women (i.e. pregnancy) for being seen when healthy.
“One study in South Africa found that a man who is seen seeking care at a health facility could lead to gossip about HIV status, since men do not have the same reasons as women (i.e. pregnancy) for being seen when healthy [36].”
From Echoes of old HIV paradigms: reassessing the problem of engaging men in HIV testing and treatment through women’s perspectives (2017) · cites this paper as [36]
A study in South Africa found that male dominated spaces such as health facilities servicing truck stop drivers and men working in the mining industry were more successful in engaging men.
“A study in South Africa found that male dominated spaces such as health facilities servicing truck stop drivers and men working in the mining industry were more successful in engaging men [36].”
From Echoes of old HIV paradigms: reassessing the problem of engaging men in HIV testing and treatment through women’s perspectives (2017) · cites this paper as [36]

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Association of Implementation of a Universal Testing and Treatment Intervention With HIV Diagnosis, Receipt of Antiretroviral Therapy, and Viral Suppression in East Africa
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Gender, HIV Testing and Stigma: The Association of HIV Testing Behaviors and Community-Level and Individual-Level Stigma in Rural South Africa Differ for Men and Women
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Internalized HIV stigma, bullying, major depressive disorder, and high-risk suicidality among HIV-positive adolescents in rural Uganda
Ashaba, S., Cooper‐Vince, C. E., Maling, S., Rukundo, G. Z., Akena, D. H., & Tsai, A. C. (2018) · Cambridge Prisms Global Mental Health · doi:10.1017/gmh.2018.15 · Cited by 104 · see citing works
Community beliefs, HIV stigma, and depression among adolescents living with HIV in rural Uganda
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“It is not an acceptable disease”: A qualitative study of HIV-related stigma and discrimination and impacts on health and wellbeing for people from ethnically diverse backgrounds in Australia
Ziersch, A. M., Walsh, M., Baak, M., Rowley, G., Oudih, E., & Mwanri, L. (2021) · BMC Public Health · doi:10.1186/s12889-021-10679-y · Cited by 86 · see citing works
Stigma Reduction Training Improves Healthcare Provider Attitudes Toward, and Experiences of, Young Marginalized People in Bangladesh
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Knowledge and attitudes toward HIV/AIDS among the general population of Jeddah, Saudi Arabia
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The Role of Relationship Dynamics and Gender Inequalities As Barriers to HIV-Serostatus Disclosure: Qualitative Study among Women and Men Living with HIV in Durban, South Africa
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HIV-related stigma among people living with HIV/AIDS in rural Central China
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The importance of context in early autism intervention: A qualitative South African study
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Health Provider Views on Improving Antiretroviral Therapy Adherence Among Men Who Have Sex with Men in Coastal Kenya
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Echoes of old HIV paradigms: reassessing the problem of engaging men in HIV testing and treatment through women’s perspectives
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The social stigma of HIV–AIDS: society's role
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Understanding the Time Needed to Link to Care and Start ART in Seven HPTN 071 (PopART) Study Communities in Zambia and South Africa
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Cumulative Effects of Stigma Experiences on Retention in HIV Care Among Men and Women in the Rural Southeastern United States
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Dimensions of HIV-related stigma in rural communities in Kenya and Uganda at the start of a large HIV ‘test and treat’ trial
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An implementation study of oral and blood‐based HIV self‐testing and linkage to care among men in rural and peri‐urban KwaZulu‐Natal, South Africa
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Engaging HIV-positive clients in care: acceptability and mechanisms of action of a peer navigation program in South Africa
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HIV/AIDS-related stigma and discrimination among health care workers at Tanta University Hospitals, Egypt
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Multi-level Determinants of Clinic Attendance and Antiretroviral Treatment Adherence Among Fishermen Living with HIV/AIDS in Communities on Lake Victoria, Uganda
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Ability to use oral fluid and fingerstick HIV self-testing (HIVST) among South African MSM
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90-90-90-Plus: Maintaining Adherence to Antiretroviral Therapies
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Research priorities to inform “Treat All” policy implementation for people living with HIV in sub‐Saharan Africa: a consensus statement from the International epidemiology Databases to Evaluate AIDS (Ie DEA )
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Community Perceptions of HIV Stigma, Discriminatory Attitudes, and Disclosure Concerns: A Health Facility-Based Study in Selected Health Districts of South Africa
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Men's Perceptions of Treatment as Prevention in South Africa: Implications for Engagement in HIV Care and Treatment
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Stigma against patients with HIV/AIDS in the rapid expansion of antiretroviral treatment in large drug injection-driven HIV epidemics of Vietnam
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Impact of the test and treat policy on delays in antiretroviral therapy initiation among adult HIV positive patients from six clinics in Johannesburg, South Africa: results from a prospective cohort study
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The end of AIDS? HIV and the new landscape of illness in rural South Africa
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A systematic review of selected human rights programs to improve HIV-related outcomes from 2003 to 2015: what do we know?
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Evaluation of an integrated HIV and hypertension management model in rural South Africa: a mixed methods approach
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Community Mobilization for HIV Testing Uptake: Results From a Community Randomized Trial of a Theory-Based Intervention in Rural South Africa
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Factors that Motivated Otherwise Healthy HIV-Positive Young Adults to Access HIV Testing and Treatment in South Africa
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Paradox of HIV stigma in an integrated chronic disease care in rural South Africa: Viewpoints of service users and providers
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The Changing Landscape of Diverse HIV Treatment and Prevention Interventions: Experiences and Perceptions of Adolescents and Young Adults in Rural KwaZulu-Natal, South Africa
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Impact of HIV knowledge and stigma on the uptake of HIV testing – Results from a community-based participatory research survey among migrants from sub-Saharan Africa in Germany
Kuehne, A., Koschollek, C., Hövener, C., Thorlie, A., Müllerschön, J., Tshibadi, C. M., Mayamba, P., Batemona-Abeke, H., Amoah, S., Greiner, V. W., et al. (2018) · PLoS ONE · doi:10.1371/journal.pone.0194244 · Cited by 27 · see citing works
Loss to follow-up and opportunities for reengagement in HIV care in rural Mozambique
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Universal HIV testing and treatment and HIV stigma reduction: a comparative thematic analysis of qualitative data from the HPTN 071 (PopART) trial in South Africa and Zambia
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“Treatment is not yet necessary”: delays in seeking access to HIV treatment in Uganda and Zimbabwe
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eHealth for Stigma Reduction Efforts Designed to Improve Engagement in Care for People Living with HIV
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Impact of SMS and peer navigation on retention in HIV care among adults in South Africa: results of a three‐arm cluster randomized controlled trial
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A community mobilisation intervention to improve engagement in HIV testing, linkage to care, and retention in care in South Africa: a cluster-randomised controlled trial
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Pilot Outcomes of Maisha: An HIV Stigma Reduction Intervention Developed for Antenatal Care in Tanzania
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‘You Have to Withstand That Because You Have Come for What You Have Come for’: Barriers and facilitators to antiretroviral treatment access among older South Africans living with HIV
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A livelihood intervention to improve economic and psychosocial well-being in rural Uganda: Longitudinal pilot study
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Community and health system factors associated with antiretroviral therapy initiation among men and women in Malawi: a mixed methods study exploring gender-specific barriers to care
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HIV-Related Stigma, Social Support, and Symptoms of Mental Health Disorders Among People with HIV Initiating HIV Care in Cameroon
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Trajectories of HIV-related internalized stigma and disclosure concerns among art initiators and noninitiators in South Africa.
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HIV fatalism and engagement in transactional sex among Ugandan fisherfolk living with HIV
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Social entrepreneurship interventions in the HIV/AIDS sector: A social entrepreneurship–social work perspective
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Identifying longitudinal patterns of HIV treatment (dis)engagement and re-engagement from oral histories of virologically unsuppressed persons in Uganda: A thematic trajectory analysis
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The Correlation Between Stigma and Mental Health Disorders in People Living with HIV/AIDS
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Pathways to HIV testing and care in Goa, India: exploring psychosocial barriers and facilitators using mixed methods
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Community-Based Accompaniment and the Impact of Distance for HIV Patients Newly Initiated on Antiretroviral Therapy: Early Outcomes and Clinic Visit Adherence in Rural Rwanda
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Same‐day and rapid initiation of antiretroviral therapy in people living with HIV in Asia. How far have we come?
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What motivated men to start PrEP? A cross-section of men starting PrEP in Buffalo city municipality, South Africa
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A Framework to Inform Strategies to Improve the HIV Care Continuum in Low- and Middle-Income Countries.
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Stakeholder Engagement for Development Impact Evaluation and Evidence Synthesis
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“Deadly”, “fierce”, “shameful”: notions of antiretroviral therapy, stigma and masculinities intersecting men’s life-course in Blantyre, Malawi
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Investigating clinic transfers among HIV patients considered lost to follow-up to improve understanding of the HIV care cascade: Findings from a cohort study in rural north-eastern South Africa
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“It is not possible to go inside and have a discussion”: how fear of stigma affects delivery of community-based support for children’s HIV care
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Telling the story of intersectional stigma in HIV‐associated Kaposi's sarcoma in western Kenya: a convergent mixed‐methods approach
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Implementing universal HIV treatment in a high HIV prevalence and rural South African setting – Field experiences and recommendations of health care providers
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Using a Multi-level Framework to Test Empirical Relationships Among HIV/AIDS-Related Stigma, Health Service Barriers, and HIV Outcomes in KwaZulu-Natal, South Africa
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Daily struggle to take antiretrovirals: a qualitative study in Papuans living with HIV and their healthcare providers
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Impact of short message service and peer navigation on linkage to care and antiretroviral therapy initiation in South Africa
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Reaching underserved South Africans with integrated chronic disease screening and mobile HIV counselling and testing: A retrospective, longitudinal study conducted in Cape Town
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High risk injection drug use and uptake of HIV prevention and treatment services among people who inject drugs in KwaZulu-Natal, South Africa
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Authors: Treves-Kagan, S., Steward, W. T., Ntswane, L., Haller, R., Gilvydis, J. M., Gulati, H., Barnhart, S., & Lippman, S. A.
Affiliations: University of California, San Francisco (US)
University of Washington (US)
Corresponding author: Treves-Kagan, Sarah
ORCID: Treves-Kagan, Sarah
Steward, Wayne T.
Lippman, Sheri A.
Venue: BMC Public Health
Publisher: Springer Science and Business Media LLC
Published: 2015-12
Volume: 16
Issue: 1
Pages: 87-87
ISSN: 1471-2458 (ISSN-L)
DOI: 10.1186/s12889-016-2753-2
PMC: PMC4730651
OpenAlex: W2274030140
Cited by: 153
References: 72
Citations by year: 2026: 6 · 2025: 9 · 2024: 7 · 2023: 16 · 2022: 14 · 2021: 20 · 2020: 16 · 2019: 17 · 2018: 18 · 2017: 19 · 2016: 11
FWCI: 12.46
Type: journal article
Language: en
Open access: gold
doi.org
Licence: cc-by
creativecommons.org/licenses/by/4.0/ (tdm)
creativecommons.org/licenses/by/4.0/ (vor, 58 d)
Locations: BMC Public Health (publishedVersion, cc-by)
PubMed Central (publishedVersion, cc-by)
PubMed (publishedVersion)
eScholarship (California Digital Library) (submittedVersion)
Funders: Centers for Disease Control and Prevention (5U2GGH000324-02)
Topics: Health Sciences › Medicine › Infectious Diseases › HIV/AIDS Research and Interventions
Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › HIV/AIDS Impact and Responses
Health Sciences › Medicine › Epidemiology › HIV, Drug Use, Sexual Risk
Keywords: HIV stigma, antiretroviral therapy access, HIV testing, anticipated stigma, traditional healers, medication adherence, rural South Africa, North West Province
MeSH terms: Adult, Community Health Services, Delivery of Health Care, Humans, Male, Prejudice, Rural Population, Social Perception, South Africa, HIV Infections, Focus Groups, Anti-Retroviral Agents, Social Stigma

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Why increasing availability of ART is not enough: a rapid, community-based study on how HIV-related stigma impacts engagement to care in rural South Africa

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