Stigma and Social Exclusion among Tuberculosis Patients: A Study of Ladakh, India

By Sonal Mobar and A.K. Sharma.

Published by The International Journal of Health, Wellness and Society

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It is a truism that well being among people infected with any virus depends heavily on the perception of the cultural meaning of the virus. Using the paradigm of exclusion this paper shows how stigma related to TB leads to discrediting associations and social interactions and how it impacts the diagnosis and hence treatment seeking behavior. This paper examines stigma against HIV among people suffering from tuberculosis in Ladakh region of India. Ladakh has some unique characteristics: remoteness, extreme climatic conditions (up to-30 in winters), importance of religion (Buddhism) in public life and high population mobility (caused by mobility of students, workers and tourists). Since HIV positive people are highly susceptible to tuberculosis, the study was conducted to explore tuberculosis patients’ understanding of HIV and their attitude towards its testing and treatment.
Quantitative and ethnographic methods were used to study awareness of health facilities, health care utilization behavior, testing and treatment of tuberculosis and perception of HIV. Quantitative data were collected from Leh and adjoining areas, from 166 patients of tuberculosis (male and female, aged 18-50 years), registered at SNM hospital for DOTS programme during April 2008-July 2009. A semi-structured interview schedule was administered which included a culturally sensitive stigma measurement scale. Qualitative interviews were conducted on doctors, paramedical staff, NGO volunteers, administrators, employees at DOTS centre, and religious priests. Application of factor analysis and multiple regression analysis shows that stigma is a cultural issue and is very little affected by socio-economic and demographic variables.
Thus development of innovative health strategies in the region through community based support structure would be helpful in combating the present situation. This calls for a general awareness campaign as well as development of innovative health strategies in the region through community based support structure.

Keywords: Stigma, Social Exclusion, Tuberculosis, HIV/AIDS

The International Journal of Health, Wellness and Society, Volume 1, Issue 4, pp.119-140. Article: Print (Spiral Bound). Article: Electronic (PDF File; 792.637KB).

Dr. Sonal Mobar

Senior Research Scholar, Discipline of Sociology,, Department of Humanities and Social Sciences., Indian Institute of Technology Kanpur, Kanpur, Uttar Pradesh, India

Sonal Mobar earned her Post graduate degree in Social Anthropology from Lucknow University, India. She is currently pursuing her PhD in Sociology under the guidance of Professor A. K. Sharma, Indian Institute of Technology Kanpur, India. She is deeply interested in Sociology of Health and health situations of tribals, and hence she undertook this exploratory study at the remote cold desert of Ladakh. She believes in qualitative work and that an ethnographic work reveals the true nature of the issue concerned. The fieldwork was funded by the Parkes Foundation, UK.

Prof. A.K. Sharma

Professor, Discipline of Sociology,, Humanities and Social Sciences, Indian Institute of Technology Kanpur, Kanpur, Uttar Pradesh, India

Professor Arun Kumar Sharma is currently a Professor of Sociology at the Department of Humanities and Social Sciences, Indian Institute of Technology Kanpur, India. His main areas of interests are health and environment, social demography and rural development.