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      Impact of Stigma on People Living with Chronic Hepatitis B

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          Abstract

          Background

          People with chronic infectious diseases such as hepatitis B can face stigma, which can influence everyday life as well as willingness to engage with medical professionals or disclose disease status. A systematic literature review was performed to characterize the level and type of stigma experienced by people infected with hepatitis B virus (HBV) as well as to identify instruments used to measure it.

          Methods

          A literature review was performed using the PubMed, Embase and Cochrane Library databases to identify studies describing HBV-related stigma. For inclusion, articles were required to be published in full-text form, in English and report quantitative or qualitative data on HBV-related stigma that could be extracted.

          Results

          A total of 23 (17 quantitative and 6 qualitative) articles examined HBV-related stigma. The scope of the review was global but nearly all identified studies were conducted in countries in the WHO Southeast Asia or Western Pacific regions or within immigrant communities in North America. Several quantitative studies utilized tools specifically designed to assess aspects of stigma. Qualitative studies were primarily conducted via patient interviews. Internalized and social stigma were common among people living with chronic HBV . Some people also perceived structural/institutional stigma, with up to 20% believing that they may be denied healthcare and up to 30% stating they may experience workplace discrimination due to HBV.

          Conclusion

          HBV-related stigma is common, particularly in some countries in Southeast Asia and the Western Pacific region and among Asian immigrant communities, but is poorly characterized in non-Asian populations. Initiatives are needed to document and combat stigma (particularly in settings/jurisdictions where it is poorly described) as well as its clinical and socioeconomic consequences.

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          Most cited references44

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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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            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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              Critical challenges and emerging opportunities in hepatitis C virus research in an era of potent antiviral therapy: Considerations for scientists and funding agencies.

              The development and clinical implementation of direct-acting antivirals (DAAs) has revolutionized the treatment of chronic hepatitis C. Infection with any hepatitis C virus (HCV) genotype can now be eliminated in more than 95% of patients with short courses of all-oral, well-tolerated drugs, even in those with advanced liver disease and liver transplant recipients. DAAs have proven so successful that some now consider HCV amenable to eradication, and continued research on the virus of little remaining medical relevance. However, given 400,000 HCV-related deaths annually important challenges remain, including identifying those who are infected, providing access to treatment and reducing its costs. Moreover, HCV infection rarely induces sterilizing immunity, and those who have been cured with DAAs remain at risk for reinfection. Thus, it is very unlikely that global eradication and elimination of the cancer risk associated with HCV infection can be achieved without a vaccine, yet research in that direction receives little attention. Further, over the past two decades HCV research has spearheaded numerous fundamental discoveries in the fields of molecular and cell biology, immunology and microbiology. It will continue to do so, given the unique opportunities afforded by the reagents and knowledge base that have been generated in the development and clinical application of DAAs. Considering these critical challenges and new opportunities, we conclude that funding for HCV research must be sustained.
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                Author and article information

                Journal
                Patient Relat Outcome Meas
                Patient Relat Outcome Meas
                PROM
                prom
                Patient Related Outcome Measures
                Dove
                1179-271X
                09 March 2020
                2020
                : 11
                : 95-107
                Affiliations
                [1 ]Ossian Health Economics and Communications , Basel, Switzerland
                [2 ]Janssen Pharmaceutica NV , Beerse, Belgium
                [3 ]Janssen Global Services, LLC , Raritan, NJ, USA
                Author notes
                Correspondence: Jayne Smith-Palmer Ossian Health Economics and Communications GmbH , Bäumleingasse 20, Basel4051, SwitzerlandTel +41 61 271 6214 Email smith-palmer@ossianconsulting.com
                Author information
                http://orcid.org/0000-0001-6049-1241
                http://orcid.org/0000-0002-9873-7507
                Article
                226936
                10.2147/PROM.S226936
                7082540
                32214859
                9bc4c594-f535-485b-a903-013048c54d02
                © 2020 Smith-Palmer et al.

                This work is published and licensed by Dove Medical Press Limited. The full terms of this license are available at https://www.dovepress.com/terms.php and incorporate the Creative Commons Attribution – Non Commercial (unported, v3.0) License ( http://creativecommons.org/licenses/by-nc/3.0/). By accessing the work you hereby accept the Terms. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed. For permission for commercial use of this work, please see paragraphs 4.2 and 5 of our Terms ( https://www.dovepress.com/terms.php).

                History
                : 12 August 2019
                : 14 February 2020
                Page count
                Figures: 1, Tables: 2, References: 57, Pages: 13
                Funding
                This study was supported by funding from Janssen Pharmaceutica NV.
                Categories
                Original Research

                Medicine
                hepatitis b,stigma,discrimination
                Medicine
                hepatitis b, stigma, discrimination

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