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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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          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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          Most cited references58

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          Stigma in the HIV/AIDS epidemic: a review of the literature and recommendations for the way forward.

          Although stigma is considered a major barrier to effective responses to the HIV/AIDS epidemic, stigma reduction efforts are relegated to the bottom of AIDS programme priorities. The complexity of HIV/AIDS-related stigma is often cited as a primary reason for the limited response to this pervasive phenomenon. In this paper, we systematically review the scientific literature on HIV/AIDS-related stigma to document the current state of research, identify gaps in the available evidence and highlight promising strategies to address stigma. We focus on the following key challenges: defining, measuring and reducing HIV/AIDS-related stigma as well as assessing the impact of stigma on the effectiveness of HIV prevention and treatment programmes. Based on the literature, we conclude by offering a set of recommendations that may represent important next steps in a multifaceted response to stigma in the HIV/AIDS epidemic.
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            From conceptualizing to measuring HIV stigma: a review of HIV stigma mechanism measures.

            Recent analyses suggest that lack of clarity in the conceptualization and measurement of HIV stigma at an individual level is a significant barrier to HIV prevention and treatment efforts. In order to address this concern, we articulate a new framework designed to aid in clarifying the conceptualization and measurement of HIV stigma among individuals. The HIV Stigma Framework explores how the stigma of HIV elicits a series of stigma mechanisms, which in turn lead to deleterious outcomes for HIV uninfected and infected people. We then apply this framework to review measures developed to gauge the effect of HIV stigma since the beginning of the epidemic. Finally, we emphasize the utility of using three questions to guide future HIV stigma research: who is affected by, how are they affected by, and what are the outcomes of HIV stigma?
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              HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action.

              Internationally, there has been a recent resurgence of interest in HIV and AIDS-related stigma and discrimination, triggered at least in part by growing recognition that negative social responses to the epidemic remain pervasive even in seriously affected communities. Yet, rarely are existing notions of stigma and discrimination interrogated for their conceptual adequacy and their usefulness in leading to the design of effective programmes and interventions. Taking as its starting point, the classic formulation of stigma as a 'significantly discrediting' attribute, but moving beyond this to conceptualize stigma and stigmatization as intimately linked to the reproduction of social difference, this paper offers a new framework by which to understand HIV and AIDS-related stigma and its effects. It so doing, it highlights the manner in which stigma feeds upon, strengthens and reproduces existing inequalities of class, race, gender and sexuality. It highlights the limitations of individualistic modes of stigma alleviation and calls instead for new programmatic approaches in which the resistance of stigmatized individuals and communities is utilized as a resource for social change.
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                Author and article information

                Contributors
                kagan.sarah@gmail.com
                wayne.steward@ucsf.edu
                lntswane@itech-southafrica.org
                robinhaller07@gmail.com
                jay@globalactionconsulting.com
                harnikg@uw.edu
                sbht@uw.edu
                sheri.lippman@ucsf.edu
                Journal
                BMC Public Health
                BMC Public Health
                BMC Public Health
                BioMed Central (London )
                1471-2458
                28 January 2016
                28 January 2016
                2015
                : 16
                : 87
                Affiliations
                [ ]University of California, San Francisco, Center for AIDS Prevention Studies, San Francisco, CA USA
                [ ]University of Washington, International Training and Education Center for Health (ITECH) – South Africa, Pretoria, South Africa
                [ ]University of California, San Francisco, Global Health Sciences, San Francisco, CA USA
                [ ]University of Washington, International Training and Education Center for Health, Seattle, WA USA
                Article
                2753
                10.1186/s12889-016-2753-2
                4730651
                26823077
                bbc4c29d-5459-4acb-8d90-bfd8dc197417
                © Treves-Kagan et al. 2016

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                History
                : 29 September 2015
                : 19 January 2016
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/100000030, Centers for Disease Control and Prevention;
                Award ID: 5U2GGH000324-02
                Award Recipient :
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2016

                Public health
                hiv,south africa,stigma,engagement to care,antiretroviral therapy (art)
                Public health
                hiv, south africa, stigma, engagement to care, antiretroviral therapy (art)

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