Assessing the Consequences of Stigma for Tuberculosis Patients in Urban Zambia

Assessing the consequences of stigma for tuberculosis patients in urban zambia Cremers, A.L.; de Laat, M.M.; Kapata, N.; Gerrets, R.P.M.; Klipstein-Grobusch, K.; Grobusch, M.P. Published in: PLoS ONE DOI: 10.1371/journal.pone.0119861 Link to publication Citation for published version (APA): Cremers, A. L., de Laat, M. M., Kapata, N., Gerrets, R., Klipstein-Grobusch, K., & Grobusch, M. P. (2015). Assessing the consequences of stigma for tuberculosis patients in urban zambia. PLoS ONE, 10(3), [e0119861]. https://doi.org/10.1371/journal.pone.0119861 General rights It is not permitted to download or to forward/distribute the text or part of it without the consent of the author(s) and/or copyright holder(s), other than for strictly personal, individual use, unless the work is under an open content license (like Creative Commons). Disclaimer/Complaints regulations If you believe that digital publication of certain material infringes any of your rights or (privacy) interests, please let the Library know, stating your reasons. In case of a legitimate complaint, the Library will make the material inaccessible and/or remove it from the website. Please Ask the Library: https://uba.uva.nl/en/contact, or a letter to: Library of the University of Amsterdam, Secretariat, Singel 425, 1012 WP Amsterdam, The Netherlands. You will be contacted as soon as possible. Abstract Background Stigma is one of the many factors hindering tuberculosis (TB) control by negatively affecting hospital delay and treatment compliance. In Zambia, the morbidity and mortality due to TB remains high, despite extended public health attempts to control the epidemic and to diminish stigma. Study Aim To enhance understanding of TB-related stigmatizing perceptions and to describe TB patients' experiences of stigma in order to point out recommendations to improve TB policy. Methods We conducted a mixed method study at Kanyama clinic and surrounding areas, in Lusaka, Zambia; structured interviews with 300 TB patients, multiple in-depth interviews with 30 TB patients and 10 biomedical health workers, 3 focus group discussions with TB patients and treatment supporters, complemented by participant observation and policy analysis of the TB control program. Predictors of stigma were identified by use of multivariate regression analyses; qualitative analysis of the in-depth interviews, focus group discussions and participant observation was used for triangulation of the study findings. Results We focused on the 138/300 patients that described TB-related perceptions and attitudes, of whom 113 (82%) reported stigma. Data Availability Statement: All relevant data from the TBAC study are contained within the paper. Additional data will be made available by our first author. The original data contain information which may lead to the identification of study subjects and in order to protect their privacy, a request to gain access to the original data is needed. Funding: No specific funding was received for this study other than the personal grants for ALC specified below. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. both among children and adults and included low self-esteem, insults, ridicule, discrimination, social exclusion, and isolation leading to a decreased quality of life and social status, non-disclosure, and/or difficulties with treatment compliance and adherence. Women had significantly more stigma-related problems than men. Conclusions The findings illustrate that many TB patients faced stigma-related issues, often hindering effective TB control and suggesting that current efforts to reduce stigma are not yet optimal. The content and implementation of sensitization programs should be improved and more emphasis needs to be placed on women and children. Introduction Alongside biological, economic, and cultural barriers to effective tuberculosis (TB) control, stigma constitutes one of the major social factors causing hospital delay and hindering compliance among TB patients The importance of addressing stigma related to TB is illustrated by the fact that this disease is one of the major causes of death worldwide. Zambia ranks 29 th among the world's top TB countries identified by the World Health Organisation (WHO) having 427/100.000 incident TB cases in the year 2012. HIV co-infection rate is 61% and MDR-TB prevails in 0.3% of new Consequences of Stigma for Tuberculosis Patients in Urban Zambia PLOS ONE

Assessing the Consequences of Stigma for Tuberculosis Patients in Urban Zambia

Background Stigma is one of the many factors hindering tuberculosis (TB) control by negatively affecting hospital delay and treatment compliance. In Zambia, the morbidity and mortality due to TB remains high, despite extended public health attempts to control the epidemic and to diminish stigma. Study Aim To enhance understanding of TB-related stigmatizing perceptions and to describe TB patients' experiences of stigma in order to point out recommendations to improve TB policy. Methods We conducted a mixed method study at Kanyama clinic and surrounding areas, in Lusaka, Zambia; structured interviews with 300 TB patients, multiple in-depth interviews with 30 TB patients and 10 biomedical health workers, 3 focus group discussions with TB patients and treatment supporters, complemented by participant observation and policy analysis of the TB control program. Predictors of stigma were identified by use of multivariate regression analyses; qualitative analysis of the in-depth interviews, focus group discussions and participant observation was used for triangulation of the study findings. Results We focused on the 138/300 patients that described TB-related perceptions and attitudes, of whom 113 (82%) reported stigma. Stigma provoking TB conceptions were associated with human immunodeficiency virus (HIV)-infection, alleged immoral behaviour, (perceived) incurability, and (traditional) myths about TB aetiology. Consequences of stigma prevailed both among children and adults and included low self-esteem, insults, ridicule, discrimination, social exclusion, and isolation leading to a decreased quality of life and social status, non-disclosure, and/or difficulties with treatment compliance and adherence. Women had significantly more stigma-related problems than men. Conclusions The findings illustrate that many TB patients faced stigma-related issues, often hindering effective TB control and suggesting that current efforts to reduce stigma are not yet optimal. The content and implementation of sensitization programs should be improved and more emphasis needs to be placed on women and children

Socio-demographic characteristics and tuberculosis-related parameters of TBAC study participants, Lusaka, Zambia.

<p>*Standard Deviation</p><p>Socio-demographic characteristics and tuberculosis-related parameters of TBAC study participants, Lusaka, Zambia.</p

Socio-demographic characteristics and tuberculosis-related parameters of TBAC study participants who reported TB-related perceptions/attitudes, Lusaka, Zambia.

<p>Socio-demographic characteristics and tuberculosis-related parameters of TBAC study participants who reported TB-related perceptions/attitudes, Lusaka, Zambia.</p

Multivariate logistic regression analyses predicting stigma in 138 TB patients, TBAC study, Lusaka, Zambia.

<p>Multivariate logistic regression analyses predicting stigma in 138 TB patients, TBAC study, Lusaka, Zambia.</p

Socio-demographic characteristics and tuberculosis-related parameters of in-depth sample of TBAC study, Lusaka, Zambia.

<p>Socio-demographic characteristics and tuberculosis-related parameters of in-depth sample of TBAC study, Lusaka, Zambia.</p