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      Measuring Sexual Behavior Stigma to Inform Effective HIV Prevention and Treatment Programs for Key Populations

      research-article
      , MPH, PhD 1 , , , PhD 2 , , PhD 3 , 4 , , MPH, PhD 5 , , MPH, MD 1
      (Reviewer), (Reviewer)
      JMIR Public Health and Surveillance
      JMIR Publications
      stigmatization, social stigma, HIV, male homosexuality, sex workers

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          Abstract

          Background

          The levels of coverage of human immunodeficiency virus (HIV) treatment and prevention services needed to change the trajectory of the HIV epidemic among key populations, including gay men and other men who have sex with men (MSM) and sex workers, have consistently been shown to be limited by stigma.

          Objective

          The aim of this study was to propose an agenda for the goals and approaches of a sexual behavior stigma surveillance effort for key populations, with a focus on collecting surveillance data from 4 groups: (1) members of key population groups themselves (regardless of HIV status), (2) people living with HIV (PLHIV) who are also members of key populations, (3) members of nonkey populations, and (4) health workers.

          Methods

          We discuss strengths and weaknesses of measuring multiple different types of stigma including perceived, anticipated, experienced, perpetrated, internalized, and intersecting stigma as measured among key populations themselves, as well as attitudes or beliefs about key populations as measured among other groups.

          Results

          With the increasing recognition of the importance of stigma, consistent and validated stigma metrics for key populations are needed to monitor trends and guide immediate action. Evidence-based stigma interventions may ultimately be the key to overcoming the barriers to coverage and retention in life-saving antiretroviral-based HIV prevention and treatment programs for key populations.

          Conclusions

          Moving forward necessitates the integration of validated stigma scales in routine HIV surveillance efforts, as well as HIV epidemiologic and intervention studies focused on key populations, as a means of tracking progress toward a more efficient and impactful HIV response.

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          Most cited references86

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          Development of reliable and valid short forms of the marlowe-crowne social desirability scale

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            Review of sampling hard-to-reach and hidden populations for HIV surveillance.

            Adequate surveillance of hard-to-reach and 'hidden' subpopulations is crucial to containing the HIV epidemic in low prevalence settings and in slowing the rate of transmission in high prevalence settings. For a variety of reasons, however, conventional facility and survey-based surveillance data collection strategies are ineffective for a number of key subpopulations, particularly those whose behaviors are illegal or illicit. This paper critically reviews alternative sampling strategies for undertaking behavioral or biological surveillance surveys of such groups. Non-probability sampling approaches such as facility-based sentinel surveillance and snowball sampling are the simplest to carry out, but are subject to a high risk of sampling/selection bias. Most of the probability sampling methods considered are limited in that they are adequate only under certain circumstances and for some groups. One relatively new method, respondent-driven sampling, an adaptation of chain-referral sampling, appears to be the most promising for general applications. However, as its applicability to HIV surveillance in resource-poor settings has yet to be established, further field trials are needed before a firm conclusion can be reached.
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              Health-related stigma.

              The concept of stigma, denoting relations of shame, has a long ancestry and has from the earliest times been associated with deviations from the 'normal', including, in various times and places, deviations from normative prescriptions of acceptable states of being for self and others. This paper dwells on modern social formations and offers conceptual and theoretical pointers towards a more convincing contemporary sociology of health-related stigma. It starts with an appreciation and critique of Goffman's benchmark sensitisation and traces his influence on the personal tragedy or deviance paradigm dominant in the medical sociology from the 1970s. To allow for the development of an argument, the focus here is on specific types of disorder--principally, epilepsy and HIV--rather than the research literature as a whole. Brief and critical consideration is given to attempts to operationalise or otherwise 'measure' health-related stigma. The advocacy of a rival oppression paradigm by disability theorists from the 1980s, notably through re-workings of the social model of disability, is addressed. It is suggested that we are now in a position to learn and move on from this paradigm 'clash'. A re-framing of notions of relations of stigma, signalling shame, and relations of deviance, signalling blame, is proposed. This framework, and the positing of a variable and changing dynamic between cultural norms of shame and blame--always embedded in social structures of class, command, gender, ethnicity and so on--is utilised to explore recent approaches to health stigma reduction programmes.
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                Author and article information

                Contributors
                Journal
                JMIR Public Health Surveill
                JMIR Public Health Surveill
                JPH
                JMIR Public Health and Surveillance
                JMIR Publications (Toronto, Canada )
                2369-2960
                Apr-Jun 2017
                26 April 2017
                : 3
                : 2
                : e23
                Affiliations
                [1] 1Center for Public Health and Human Rights Department of Epidemiology Johns Hopkins University Baltimore, MDUnited States
                [2] 2Department of Social and Environmental Health Research London School of Hygiene & Tropical Medicine LondonUnited Kingdom
                [3] 3HIV Justice Network Detroit, MIUnited States
                [4] 4Irvin D Reid Honors College Wayne State University Detroit, MIUnited States
                [5] 5Department of Global Health Youth and Development International Center for Research on Women Washington, DCUnited States
                Author notes
                Corresponding Author: Shauna Stahlman sstahlm1@ 123456jhu.edu
                Author information
                http://orcid.org/0000-0003-2861-7734
                http://orcid.org/0000-0002-3509-3572
                http://orcid.org/0000-0003-4578-7217
                http://orcid.org/0000-0001-9325-5077
                http://orcid.org/0000-0002-5482-2419
                Article
                v3i2e23
                10.2196/publichealth.7334
                5425775
                28446420
                8ac5e7b7-0405-4964-9983-e161bff5a52b
                ©Shauna Stahlman, James R Hargreaves, Laurel Sprague, Anne L Stangl, Stefan D Baral. Originally published in JMIR Public Health and Surveillance (http://publichealth.jmir.org), 26.04.2017.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Public Health and Surveillance, is properly cited. The complete bibliographic information, a link to the original publication on http://publichealth.jmir.org, as well as this copyright and license information must be included.

                History
                : 16 January 2017
                : 19 February 2017
                : 26 February 2017
                : 1 March 2017
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                stigmatization,social stigma,hiv,male homosexuality,sex workers

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