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      Stigma matters in ending tuberculosis: Nationwide survey of stigma in Ethiopia

      research-article
      1 , , 1 , 2
      BMC Public Health
      BioMed Central
      Tuberculosis, Stigma, Ethiopia

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          Abstract

          Background

          Tuberculosis (TB) affects, and claims the lives of, millions every year. Despite efforts to find and treat TB, about four million cases were missed globally in 2017. Barriers to accessing health care, inadequate health-seeking behavior of the community, poor socioeconomic conditions, and stigma are major determinants of this gap. Unfortunately, TB-related stigma remains unexplored in Ethiopia.

          Methods

          This mixed methods survey was conducted using multistage cluster sampling to identify 32 districts and 8 sub-cities, from which 40 health centers were randomly selected. Twenty-one TB patients and 21 family members were enrolled from each health center, and 11 household members from each community in the catchment population.

          Results

          A total of 3463 participants (844 TB patients, 836 from their families, and 1783 from the general population) were enrolled for the study. The mean age and standard deviation were 34.3 ± 12.9 years for both sexes (34.9 ± 13.2 for men and 33.8 ± 12.5 for women). Fifty percent of the study participants were women; 32.1% were illiterate; and 19.8% came from the lowest wealth quintile. The mean stigma score was 18.6 for the general population, 20.5 for families, and 21.3 for TB patients. The general population of Addis Ababa (AOR: 0.1 [95% CI: 0.06–0.17]), those educated above secondary school (AOR: 0.58 [95% CI: 0.39–0.87]), and those with a high score for knowledge about TB (AOR: 0.62 [95% CI: 0.49–0.78]) had low stigma scores. Families of TB patients who attended above secondary school (AOR: 0.37 [95% CI: 0.23–0.61]) had low stigma scores. TB patients educated above secondary school (AOR: 0.61 [95% CI: 0.38–0.97]) had lower stigma scores, while those in the first (AOR: 1.93: 95% CI 1.05–3.57) and third quintiles (AOR: 1.81: 95% CI: 1.08–3.05) had stigma scores twice as high as those in the highest quintile. Fear of job loss (32.5%), isolation (15.3%), and feeling avoided (9.3%) affected disclosure about TB.

          Conclusions

          More than a third of Ethiopians have high scores for TB-related stigma, which were associated with educational status, poverty, and lack of awareness about TB. Stigma matters in TB prevention, care, and treatment and warrants stigma reduction interventions.

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          Most cited references31

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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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            The fight against stigma: an overview of stigma-reduction strategies and interventions.

            In many health conditions, people are severely affected by health-related stigma and discrimination. A literature review was conducted to identify stigma-reduction strategies and interventions in the field of HIV/AIDS, mental illness, leprosy, TB and epilepsy. The review identified several levels at which interventions and strategies are being implemented. These are the intrapersonal, interpersonal, organizational/institutional, community and governmental/structural level. Although a lot of work has been carried out on stigma and stigma reduction, far less work has been done on assessing the effectiveness of stigma-reduction strategies. The effective strategies identified mainly concentrated on the individual and the community level. In order to reduce health-related stigma and discrimination significantly, single-level and single-target group approaches are not enough. What is required is a patient-centred approach, which starts with interventions targeting the intrapersonal level, to empower affected persons to assist in the development and implementation of stigma-reduction programmes at other levels.
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              Causes of stigma and discrimination associated with tuberculosis in Nepal: a qualitative study

              Background Tuberculosis (TB) is a major cause of death. The condition is highly stigmatised, with considerable discrimination towards sufferers. Although there have been several studies assessing the extent of such discrimination, there is little published research explicitly investigating the causes of the stigma and discrimination associated with TB. The objectives of our research were therefore to take the first steps towards determining the causes of discrimination associated with TB. Methods Data collection was performed in Kathmandu, Nepal. Thirty four in-depth interviews were performed with TB patients, family members of patients, and members of the community. Results Causes of self-discrimination identified included fear of transmitting TB, and avoiding gossip and potential discrimination. Causes of discrimination by members of the general public included: fear of a perceived risk of infection; perceived links between TB and other causes of discrimination, particularly poverty and low caste; perceived links between TB and disreputable behaviour; and perceptions that TB was a divine punishment. Furthermore, some patients felt they were discriminated against by health workers Conclusion A comprehensive package of interventions, tailored to the local context, will be needed to address the multiple causes of discrimination identified: basic population-wide health education is unlikely to be effective.
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                Author and article information

                Contributors
                dgemechu@msh.org , danieljohn42@yahoo.com
                Journal
                BMC Public Health
                BMC Public Health
                BMC Public Health
                BioMed Central (London )
                1471-2458
                6 February 2020
                6 February 2020
                2020
                : 20
                : 190
                Affiliations
                [1 ]Challenge TB/Ethiopia and Management Sciences for Health/Ethiopia, P.O. Box 1157, Code 1250 Addis Ababa, Ethiopia
                [2 ]ISNI 0000 0001 2203 2044, GRID grid.436296.c, Management Sciences for Health, Senior Director Infectious Diseases Cluster, ; Arlington, USA
                Author information
                http://orcid.org/0000-0002-8556-3069
                Article
                7915
                10.1186/s12889-019-7915-6
                7006204
                32028914
                0cd19cee-84cc-47ea-b0ce-5f9b294d8572
                © The Author(s). 2020

                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
                : 19 June 2019
                : 7 November 2019
                Funding
                Funded by: USAID
                Award ID: AID-OAA-A-14-00029
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2020

                Public health
                tuberculosis,stigma,ethiopia
                Public health
                tuberculosis, stigma, ethiopia

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