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      Understanding stigma as a barrier to accessing cancer treatment in South Africa: implications for public health campaigns

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          Abstract

          Introduction

          Cancer contributes to significant illness burden in South Africa, with delayed diagnosis resulting from limited knowledge of cancer, lack of biomedical treatment and stigma. This study examines ways in which people are identified as having cancer through perspectives of traditional healing or the biomedical model. Additionally, we sought to understand the stigma associated with cancer, including stereotypes, anticipated discrimination and coping styles.

          Methods

          Livestrong Foundation conducted 11 semi-structured focus groups with key community stakeholders in three South African townships. Interviews examined the negative consequences of being labeled with a cancer diagnosis as well as causes of, possible prevention of and barriers and methods to improve access to cancer treatment. Analyses were completed using directed content analysis.

          Results

          Revealed three main labeling mechanisms: physical appearance of perceived signs/symptoms of cancer, diagnosis by a traditional healer, or a biomedical diagnosis by a Western physician. Being labeled led to anticipated discrimination in response to prevalent cancer stereotypes. This contributed to delayed treatment, use of traditional healers instead of biomedical treatment and secrecy of symptoms and/or diagnosis. Further, perceptions of cancer were commonly conflated with HIV/TB owing to prior educational campaigns.

          Conclusion

          Our study deepens the understanding of the cancer labeling process in South Africa and the resulting negative effects of stigma. Future anti-stigma interventions should partner with traditional healers due to their respected community status and consider how previous health interventions may significantly impact current understandings of illness.

          Most cited references23

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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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            On stigma and its consequences: evidence from a longitudinal study of men with dual diagnoses of mental illness and substance abuse.

            Numerous studies have demonstrated a strong connection between the experience of stigma and the well-being of the stigmatized. But in the area of mental illness there has been controversy surrounding the magnitude and duration of the effects of labeling and stigma. One of the arguments that has been used to downplay the importance of these factors is the substantial body of evidence suggesting that labeling leads to positive effects through mental health treatment. However, as Rosenfield (1997) points out, labeling can simultaneously induce both positive consequences through treatment and negative consequences through stigma. In this study we test whether stigma has enduring effects on well-being by interviewing 84 men with dual diagnoses of mental disorder and substance abuse at two points in time--at entry into treatment, when they were addicted to drugs and had many psychiatric symptoms and then again after a year of treatment, when they were far less symptomatic and largely drug- and alcohol-free. We found a relatively strong and enduring effect of stigma on well-being. This finding indicates that stigma continues to complicate the lives of the stigmatized even as treatment improves their symptoms and functioning. It follows that if health professionals want to maximize the well-being of the people they treat, they must address stigma as a separate and important factor in its own right.
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              Measuring health-related stigma--a literature review.

              Stigma related to chronic health conditions such as HIV/AIDS, leprosy, tuberculosis, mental illness and epilepsy is a global phenomenon with a severe impact on individuals and their families, and on the effectiveness of public health programmes. To compare stigma measurement in different disciplines, a literature review was conducted. References were obtained through a search of literature databases and through examining relevant bibliographies. Sixty-three papers were selected that addressed the issue of measurement of stigma or related constructs and that contained a sample of the instrument or items used. Five unpublished studies were also included in the review. The aspects of health-related stigma used for assessment can be grouped in five categories. First, the experience of actual discrimination and/or participation restrictions on the part of the person affected; second, attitudes towards the people affected; third, perceived or felt stigma; fourth, self or internalized stigma; and fifth, discriminatory and stigmatizing practices in (health) services, legislation, media and educational materials. Within each of these areas, different research methods have been used, including questionnaires, qualitative methods, indicators and scales. The characteristics of the instruments considered most promising are described and compared. The purpose of stigma assessment is to increase our understanding of stigma and its determinants and dynamics, to determine its extent or severity in a given setting or target group and to monitor changes in stigma over time. The conclusions from this review are that (a) the consequences of stigma are remarkably similar in different health conditions, cultures and public health programmes; (b) many instruments have been developed to assess the intensity and qualities of stigma, but often these have been condition-specific; and (c) development of generic instruments to assess health-related stigma may be possible. To achieve this aim, existing instruments should be further validated, developed or adapted for generic use, where possible.
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                Author and article information

                Journal
                Pan Afr Med J
                Pan Afr Med J
                PAMJ
                The Pan African Medical Journal
                The African Field Epidemiology Network
                1937-8688
                24 January 2018
                2018
                : 29
                : 73
                Affiliations
                [1 ]Harris School of Public Policy, University of Chicago, Chicago, United States
                [2 ]College of Global Public Health, New York University, New York, United States
                [3 ]Frances L Hiatt School of Psychology, Clark University, Worcester, United States
                [4 ]Mailman School of Public Health, Columbia University, New York, United States
                [5 ]Livestrong Foundation, Austin, United States
                [6 ]Department of Sociology, University of California, Riverside, United States
                Author notes
                [& ]Corresponding author: Lawrence Hsin Yang, College of Global Public Health, New York University, New York, United States, Mailman School of Public Health, Columbia University, New York, United States
                Article
                PAMJ-29-73
                10.11604/pamj.2018.29.73.14399
                5987085
                29875954
                d0f1fc2b-6b45-4741-ad44-e49d11f88f13
                © Tatiana Oystacher et al.

                The Pan African Medical Journal - ISSN 1937-8688. This is an Open Access article distributed under the terms of the Creative Commons Attribution License which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 14 November 2017
                : 02 January 2018
                Categories
                Research

                Medicine
                cancer,south africa,stigma,knowledge,modified labeling theory
                Medicine
                cancer, south africa, stigma, knowledge, modified labeling theory

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