Stigma and Social Exclusion among Tuberculosis

Patients: A Study of Ladakh, India

Sonal Mobar, Indian Institute of Technology Kanpur, Uttar Pradesh,
India
A.K. Sharma, Indian Institute of Technology Kanpur, Uttar Pradesh,
India

Abstract: 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 tuber-
culosis 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 in-
terview 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 demo-
graphic 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

Introduction

T
HE INDIAN TUBERCULOSIS control program is now one of the largest public
health programs in the world. The program has been remarkably successful, although
it still faces many challenges. Direct health benefits to date include the treatment of
1.4 million patients with tuberculosis, prevention of more than 200,000 deaths, with
reduction in the prevalence of TB in some areas, and prevention of the spread of the disease.
Yet, more than one million new patients with TB still do not have access to the basic program
package in India. Active tuberculosis develops among 7 percent of co-infected persons each
year, producing 140,000 cases of tuberculosis each year from reactivation disease alone.

The International Journal of Health, Wellness and Society

Volume 1, Issue 4, 2012, http://HealthandSocietyJournal.com/, ISSN 2156-8960
© Common Ground, Sonal Mobar, A.K. Sharma, All Rights Reserved, Permissions:
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According to the National AIDS Control Organization (NACO), over 60% of HIV patients
contract and ultimately die of TB. Tuberculosis kills nearly 500,000 people in India each
year. Until recently, less than half of patients with TB received an accurate diagnosis, and
less than half of those received effective treatment. India is in a unique position with respect
to the global TB epidemic. Pioneering studies in India demonstrated the effectiveness of
ambulatory treatment of TB, the necessity and feasibility of direct observation of treatment,
the efficacy of intermittent treatment with anti-tuberculosis drugs, and the feasibility of case
detection by sputum-smear microscopy in primary health care institutions. However, tuber-
culosis remains the leading infectious cause of death in India. India has far more cases of
TB than any other country in the world–about two million new cases each year–and accounts
for nearly one third of prevalent cases globally. In the past few years, there has been remark-
able progress in diagnosis and treatment of TB in India (Khatri, 2002).
India has about 1.8 million new cases of tuberculosis annually, accounting for a fifth of
new cases in the world (Steinbrook, 2007). In 2004, about 330,000 in India died from
tuberculosis (WHO, 2006). Two of every five persons have latent tuberculosis infection in
India (RNTCP status report, 2006).
Stigma related to TB leads to discrediting associations and social interactions. Well being
among those infected depends on the perception of the cultural meaning of the virus. TB is
called ‘Rajaykshama’ in ancient medical texts (Shastri, 1992). It has been described as a
disease that heads the hierarchy of all other diseases. It is said,

Anekroganugato bahurogpurogamaha
Rajaykshama khshaya kshosko rograriti ch smritaha.

Though the body suffers from various ailments,

Tuberculosis is highest on the hierarchy of diseases. It leads to many other diseases as

it reduces the individual’s immunity.

TB is prevalent where people live in large family size; due to excessive smoking and illiteracy
(Malhotra et al., 1996). There are two distinct transitions:

1. From being exposed to being infected;

2. From being infected to developing the disease (Chiang, Slama and Enarson, 2007).

The disease may have various manifestations especially having chronic cough with blood-
tinged sputum, fever, night sweats and loss of weight. The disease is diagnosed through radi-
ology, a tuberculin skin test, blood tests as well as microscopic examination and microbiolo-
gical culture of the bodily fluids. TB has been labeled as a “dirty disease”, a “death penalty”,
or a punishment meted out to “guilty people” for ages (Jean Macq, 2005). The World Health
Organization (WHO) declared TB a global health emergency in 1993.

Objectives
The broad objective of the study is to affect of stigma among people suffering from tubercu-
losis and how it may lead to their social exclusion.

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Field Area: Leh (Ladakh)

Leh, the capital of Ladakh, is nestled among low hills on the northern side of the Indus
Valley. Leh with an area of 45,110 sq. km. makes it the largest district in the country in
terms of area (http://leh.nic.in/as accessed on 8th March, 2011). Leh is a place of Buddhist
belief system, fundamental to the socio-ecology of Ladakh. The traditional way of life and
institutions, based on the tenets of Buddhism, are geared to the finite resource base and the
limited capacity of the environment to support population growth.
The whole of Ladakh has a large floating population, consisting of students, foreign and
domestic tourists, military personnel and migrants. There are youngsters who leave Ladakh
in the winter to move to other parts of the country and come back in the summer. The same
is true for the businessmen. When they return back to Ladakh they bring in the new techno-
logical and consumer gadgets with them. Consequently, this town has started showing signs
of western influence.
Ladakh is divided into six main administrative blocks: Leh, Nubra, Dubruk, Nyoma, Kharu
and Khaltsi. Block Leh is the oldest block of Ladakh, which was established in 1954. Block
Nubra and Nyoma were established in 1966, Khaltsi in 1975, Dubruk in 1977, and Kharu
in 2000. The present research was carried out in Leh.

Methodology and Methods

This study enjoys the combination of quantitative and qualitative methodologies. The
quantitative studies focus on the measurements and analysis of causal relations between
variables. Such studies use frequency distribution, correlation, regression and analysis of
variance to draw objective information from such numbers (Denzin and Lincoln, 1998). On
the other hand, qualitative research emphasizes processes and meanings that are not amenable
to examination in terms of quantity, amount, frequency or intensity. Qualitative research
employs the socially constructed nature of reality, lay perceptions and situational constraints.
For the survey a sample of 166 tuberculosis patients (aged 18-50 years) was taken. Among
them 71 are females and 95 are males. Al these patients were registered at Sonam Nubro
Hospital (SNM) district hospital at Leh, Ladakh, for regular supply of medicine under Directly
Observed Treatment, Short Course (DOTS) programme during April 2008-July 2009. Of
this sample, 89.8% had pulmonary TB, 7.2% had extra-pulmonary TB and 3% had TB with
more complications (e.g. miliary TB, Multi Drug Resistant TB). More than three months
were spent in Ladakh during the year 2009 for data collection which included the survey of
166 patients as well as qualitative data from key informants and various stake holders. The
qualitative methodology was used for interviews of doctors, paramedical staff, NGO volun-
teers, administrators, employees at DOTS centre, and religious priests. This was supplemented
by observations and a few case studies.

Demographic and Socio-economic Characteristics of the Respondents

Age is an important determinant of beliefs and behavior. Table 1 shows the demographic
and socio-economic composition of the respondents. Analysis showed that average age of
the patients’ is 36.99 years (SD=8.175). The table shows that among those inflicted with
TB, about 40% people are in the age-group of 30-40 years. People less than 25 years of age

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may not be at so much risk as the middle aged or the older people. This may be due to strong
immune system, less indulgence in substance use, less load of work and more knowledge
about medical care utilization. Yet, people above 45 years of age also seem to have a high
risk of getting TB. Some of them got affected earlier and have not been fully cured.
Further, the table shows that 24.1% of all the TB patients are never married and 60.2%
are currently married. 10.8% of the respondents are widows/widowers. In several cases of
widowed persons, their partner had died of TB only. The table also reveals the educational
achievements of the respondents. It shows that majority of the respondents were literate,
though illiteracy was as high as 38%. The literature shows that education plays an important
role in influencing beliefs and practices. Ladakh being a remote area and having meager
educational institutions, most of the students have to move out of Ladakh to seek education.
As we can see from the table, 31.9% have completed high school, but only 4.2% could move
up to graduation. There were 1.2% respondents who had sought diploma (in pharmacy).
Caste is an important institution that holds a great significance in a country like India.
Since Ladakh comes under Scheduled Tribal Area zone, all people by default come under
the Scheduled Tribe category. Hence, among the 166 respondents, we have 81.3% of people
as ST (Scheduled Tribe), followed by 8.4% of people as OBC (Other Backward Classes).
Only 5.4% respondents belong to SC (Scheduled Caste) category and 4.8% to General cat-
egory.
Ladakh is predominantly a Buddhist place. Though there are a small number of Hindus,
Sikhs, Muslims and Christians too. Because the place is surrounded by Tibet and China,
there is some migration between China and Ladakh. Even Nepalese laborers have a presence
here. As the table shows, 86.7% of the respondents in the sample are Buddhists, followed
by 6.6% of Muslims.

Table 1: Percentage Distribution of Respondents According to Socio-demographic

Characteristics
(N = 166)
Background Characteristics Percent
Age *
<25 6.6
25-30 16.9
30-35 19.3
35-40 19.9
40-45 15.7
45> 21.7
Total 100.0

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Marital status
Never married 24.1
Married 60.2
Separated 1.8
Divorced 1.8
Widowed 10.8
Cohabiting 1.2
Total 100.0
Education
Illiterate 38.0
Primary 09.6
High school 31.9
Intermediate 15.1
Graduation and above 04.2
Diploma 01.2
Total 100.0
Caste/tribe
General 4.8
SC 5.4
ST 81.3
OBC 8.4
Total 100.0
Religion
Hindu 3.0
Muslim 6.6
Buddhist 86.7
Others 3.6
Total 100.0

Table 2 exhibits the distribution of respondents according to the region they belong to in
Ladakh, i.e., urban or rural. 58.4% of the respondents belonged to rural areas and 41.6% of
the respondents belong to an urban area. This also indicates towards the socio-economic
characteristic of the respondents. Leh, the capital town of Ladakh is basically the most ad-
vanced area and has all the major institutes, colleges and hospitals. People from far off places
have to come to Leh to fulfill certain basic requirements, such as selling off their agricultural

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product, striking business deals, seek education at a college/school, and use the banking fa-
cilities or any other related job.

Table 2: Place of Residence

Place of residence Percent
Urban 41.6
Rural 58.4
Total 100.0
N=166

Table 3 presents the percentage distribution of respondents by work status and nature of
main work. The main work is defined as the work through which they earn most of their in-
come. The table shows that a substantial proportion, 32.5% of the respondents practiced
agricultural activities. On the other hand, 17.5% of the respondents occupied themselves in
various private services. Further, 10.2% are employed in government services and the same
percentage of respondents is self-employed. The respondents also included housewives
making up for 9.0% of the data set.

Table 3: Percentage Distribution of Respondents According to Occupational

Characteristics
Nature of main work (among those who Percent Number
work for money)
Agriculture-owner/cultivator 28.3 47
Agriculture-landless labor 1.8 03
Agriculture-share cropping/contract 2.4 04
Government service 10.2 17
Private service 17.5 29
Self-employed 10.2 17
Casual labor in manufacturing industry 2.4 04
Household industry 3.0 05
Vendor 1.8 03
Housewife 9.0 15
Others 0.6 01
No response 12.7 21
Total 100.0 166

Table 4 exhibits respondents’ distribution according to their place of work. As the distribution
shows, majority of the Ladakhis work at the family dwelling (41.6%). This is because, as
shown in the previous table, a large number of them are occupied with agricultural activities

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or are self-employed. Further, 16.3% work in offices and 9.0% work moving from place to
place. The latter sell small gift items, souvenirs and keep shifting from one location to another.
The rest of the respondents either work at the client’s place, shops, coffee houses, or other
small stores.

Table 4: Place of Work

Place of work Percent Number
At the family dwelling 41.6 69
Client’s place 6.6 11
Office 16.3 27
Factory/Workshop 3.0 05
Plantations/farm/garden 1.8 03
Shop/kiosk/coffee house/restaurant/hotel 7.2 12
Different places (mobile) 9.0 15
Fixed street or market stall 3.0 05
Pond/lake/river 0.6 01
Others 3.0 05
Non response 7.8 13
Total 100.0 166

Table 5 shows data related to income of the respondents. It is always a daunting task to enquire
about one’s income, especially in the non-formal sector. An attempt was made to ascertain
approximate income of the respondents. The table reveals that 50% of the respondents have
monthly income between Rs. 10,000-15,000. This falls in the medium range. About 46.4%
fall in the low range with income between Rs. 5,000-10,000 per month. Only 7.8% have a
very high income of Rs. 20,000 and above. This shows that Ladakhis are moderately well
off, in spite of lack of proper resources. Their economy depends mainly on agriculture,
tourism and related business. Those involved in tourism and related business tend to have
higher range of income than those individuals in agriculture.

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Table 5: Level of Income

Level of income† Percent Number
Very Low 10.2 17
Low 46.4 77
Medium 50.0 99
High 29.5 49
Very High 07.8 13
No response 05.4 09
Total 100.0 166
†Very Low-Income below Rs. 5,000/-; Low-income from Rs.5, 001-Rs.10, 000/-; Medium-
income from Rs.10,000 to 15,000/-; High-more than Rs. 15,000/-Rs.20, 000; and Very
High income above Rs.20, 000/-
Median income of the respondents = Rs.5000 per month; Maximum= 25000/-per month

Diagnosis of and Reaction to the Infection

Interviews with the medical personnel revealed that awareness of TB, its causes and treatment
facilities is increasing. There are more facilities now. And there is more interest in diagnosis
and treatment. The old myths and misconceptions are going away. A senior caretaker at the
DOTS centre at Choglamsar, near Leh, told the researcher,

The efforts of the State government have not gone futile. Initially, people had a causal
attitude towards getting tested. But now, with changing times, people have become
more aware. Number of people coming forward to get them diagnosed and tested has
gone up. Some of them have nothing but common cold; still they have a fear that they
may have contracted Tuberculosis, so they get themselves tested. An interesting thing
to note is that the younger generation is more aware about the medical facilities
available and so they convince their elders and bring them here. Immunity in the aged
is weak and so there is high probability that they catch TB.

India began its Revised National Tuberculosis Control Program in 1993 (WHO, 2002). Its
mainstay is the strategy of directly observed treatment, short course (DOTS). Typically,
during the initial two to three months of treatment, medication is administered three times
a week under direct observation. It is, however, very important that treatment be taken for
the prescribed duration, which in every case is a minimum of 6 months. Because treatment
is of such a long duration and patients feel better after just 1-2 months, and because many
TB patients face other problems treatment is often interrupted. After that treatment depends
on the hitherto condition of the patient. It may be extended for some more time or heavier
antibiotics may be administered, depending upon the case.
The researcher witnessed that those respondents who followed the DOTS regimen were
cured completely and had a positive change in their physical appearance and attitude.

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Symptoms, Experiences and Referral

The people suffering with TB complained about suffering from a number of symptoms.
Backache, nausea and headache were mostly reported. However, the symptoms that could
be associated with TB include whooping cough, high fever, evening fever, chest pain, loss
of weight, loss of appetite and breathlessness. While men mostly complained of loss of ap-
petite and evening fever, women complained of whooping cough and anemia. A middle aged
man who worked on a part-time basis at a Gompa (monastery), said,

The Gompa is on a hilltop. Initially I would get there without getting tired; it was a
routine. Lately, it would feel extremely tough to get there, breathing would become
heavy and nose would bleed. I also started coughing with blood. That is when I realized
the seriousness and consulted the people at DOTS. The coughing had really taken a
high because the walls of the Gompa would echo and every one would look at me with
concern. I felt so embarrassed. Thankfully I listened to my friend and got timely re-
gistered with DOTS.

Medically, nose bleeding and breathlessness are two common symptoms of TB in Ladakh.
Table 6 exhibits the frequency distribution of respondents by symptoms of nose bleeding
and breathlessness. As can be seen from the table, 12% of the respondents complained of
nose bleeding and 18.7% complained of breathlessness. Ladakh being a low pressure area,
there is always less oxygen availability. Hence, people who suffer from TB have whooping
cough and tend to have problems in breathing. Nose bleeding lends to small blood clots in
nasal canals and hence, breathing becomes extremely painful. The situation is aggravated if
proper medication and preventive measures are not brought into action.

Table 6: Respondents with Symptoms of Nose Bleeding and Breathlessness

Nose Bleeding Breathlessness
Percentage Number Percentage Number
Yes 12.0 20 18.7 31
No 88.0 146 81.3 135
(N=166)

Universally, coughing is one of the main symptomatic characteristics of TB. If not treated
in time, the patient might even lose his life. This is because once infected with TB bacteria,
the immune system goes on weakening, and the body is susceptible to other life-threatening
infections. Table 7 shows that 56.0% of the respondents suffered from dry cough and 43.4%
suffered from cough with sputum. 0.6% complained of blood stains in sputum with cough.
This sputum is collected and tested in laboratories, and thence, the infection is confirmed.
The table shows that cough is by far the most important single symptom, alone and in com-
binations with other minor symptoms, among all cases. Same has been reported by the study
conducted by Banerji and Andersen (1963).

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Table 7: Respondents with Major Symptom of Cough

Kind of Cough Percentage
Dry cough 56.0
Cough with sputum 43.4
Cough with blood stain 0.6
(N=166)

Place of Testing
Decision for taking a TB test is associated with one’s daily life experiences. Easy availability
and accessibility of testing and treatment facilities would of course attract the people to go
for them. Regarding access to medical care, people were asked whether they got tested for
TB at a government facility or a private one. This showed their preference for either the
government facility or the private one. Of the 166 respondents, 94.6% said that they got
themselves tested at the government hospital (SNM hospital in this case). Only 5.4% had
got themselves tested at the private hospitals. As mentioned earlier, Sonam Nubro Memorial
(SNM) hospital is the only government hospital at Leh and people from far off villages visit
this hospital. Since, Leh has an army base also; there is an army hospital there, which may
look into civilian cases in emergency. Then, there are a few small clinics and Primary Health
Centers (PHCs) in some villages. Some of the respondents had got themselves tested outside
Ladakh. Table 8 shows that an overwhelming majority of respondents (94.6%) had availed
the testing facility at Leh itself; 7.8% of the respondents had got themselves tested outside
Leh.

Table 8: Place of TB Test

Place of TB Test Percent
Government/Private
Government facility 94.6
Private facility 05.4
Local/Outside
Local 92.2
Outside (Ladakh) 07.8
(N=166)

Another respondent, a young boy said,

I was sure that they were not my reports. The sputum tested was not my sputum; it must
have got exchanged in the laboratory. But, when I suffered from whooping cough, my
family members got suspicious. They had heard on the radio about the DOTS. I had to
relent to their pressures.

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Since a strong social stigma is attached to the disease, the respondents felt uneasy and were
deeply traumatized. On the other hand, 17.5% of the respondents felt that they should go for
treatment and get cured as quickly as possible (Table 9). This was the reaction of those who
were aware that TB is a contagious disease and procrastinating on the treatment would be
harmful for them as well as for their near and dear ones. There were 3.6% of the respondents
who were conscious about seeking the right treatment and had been on a lookout for compet-
ent doctor. They seemed a bit skeptical about the health facilities available at SNM hospital.
11.4% of the respondents had fear about the expenditure they would have to incur on the
medical care utilization.
Most of the people expressed shock and depression. Some of them took it lightly; others
were worried about the financial expenses that would be needed to cure it. They were more
worried about the financial factor than their health. Several respondents were unaware that
the DOTS provide free of cost medicine. This ignorance led to defer the treatment. It also
highlights the fact that this information has not been properly disseminated that the govern-
ment provides free of cost treatment under DOTS for TB.

Table 9: Initial Reactions of Respondents after Being Diagnosed with TB

Reaction Percent
Depressed/shocked 59.0
Should go for treatment 17.5
Look for a competent doctor 03.6
Fear of financial problems 11.4
Took it easy 7.8
Others 0.6
N=166

Though the majority of the respondents preferred the medical facility, still a few had some
inhibitions in availing the government facility regularly. The choice of a facility depends on
a number of factors such as accessibility, cost, privacy and effectiveness of the treatment.
For the vast majority (65.7%) of respondents accessibility of the facility is a major factor
(Table 10). Maintaining privacy is another major factor for nearly half of the patients (46.4%).
This is followed by effectiveness of treatment. Thus 41.0% respondents reported that the
effective treatment is a factor in deciding whether to go for government or private facility.
Lastly, for one in five (22.3%) cost of travelling is the major factor.
Qualitative feedback shows that many respondents prefer to go to a private doctor/clinic
because in the government hospital there are long queues and one has to wait for long to
meet the doctor. Sometimes when they go to hospital travelling a long distance people find
that the doctor is absent on that day. This could be very infuriating sometimes. People
commonly complained about the poor quality of care they were provided at the government
hospital.

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Table 10: Factors Affecting the Choice of Medical Facility (Either Government/Private)
Factors Percentage
Cost of travelling to hospital 22.3
Privacy 46.4
Accessibility 65.7
Effective treatment 41.0
N=166

Directly Observed Treatment, Short Course (DOTS)

The Directly Observed Treatment, Short course centre, the first Testing Unit (TU) centre at
Leh operates from approximately 8 kms away from the SNM hospital. The authorities are
working to get the two in the same campus, but the idea is still in its infancy. The DOTS
centre is located in the campus of Chief Medical Officer (CMO) office. The DOTS centre
is headed by a generalist doctor. The medicines are sought from New Delhi via Srinagar.
They have to keep a large stock in advance because Ladakh is inaccessible for some part of
the year when the delivery of medicines is impossible. This is a serious problem as transport-
ing medicine from outside takes a very long time. Smear microscopy is the most efficient
means of case detection among those persisting with symptoms suggestive of pulmonary
tuberculosis (cough of three weeks or more with other clinical symptoms). All patients dia-
gnosed are given directly observed treatment in accordance with the Revised National TB
Control Programme (RNTCP) policies.
There are three categories of patients in the DOTS regimen, first, second and third accord-
ing to the severity of infection. There are two courses, one is Intensive and another is Con-
tinuation. Patients are required to come and take their dosages either daily or on alternate
days (TB India, 2001).
It is found that 83.7% of the patients only take their medicine regularly and continuously.
Others are not so regular in taking medicine due to bad weather conditions and lack of
communication and transport mode. Moreover, many of them discontinue taking the medicine
as they find it hard to continue treatment for so long. A normal patient takes about six months
to cure, but if it is a Multi Drug Resistant TB (MDR), it may take a year or two. Some of
them become defaulters because of the side effects of the heavy dosages of medicine they
take (Data, 2002).
There are two kinds of patients; one suffering from pulmonary and another from extra-
pulmonary TB. All patients are divided into three categories based on the severity of TB.
Therefore, there are three categories of medicines packed in green, blue and red boxes which
are labeled with the patient’s names. All patients are allotted specific days of the week when
they are supposed to turn up to have their medicine. In case a patient does not come up to 4
o’ clock in the evening, a staff member designated as field staff goes with the medicine to
that person’s place. In case a dosage is missed, the treatment regimen suffers.
If the patients are positive on smear microscopy on at least two specimens and not treated
previously for TB for more than one month, they are termed as new smear positive cases
and put on Category I regimen. The patients get 2 (HRZE)3/4 (HR)3 where H is Isoniazid,
R is Rifampicin, Z is Pyrazinamide, E is Ethambutol, and S is Streptomycin. Numbers before

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the brackets indicate the duration of months and that in subscript indicate the number of
times the drug is given each week (IJTB, 2008). If these patients are sputum smear positive
and treated for more than a month, they are treated under Category II regimens 2 (HRZES)3/1
(HRZE)3/5 (HRE)3. Such patients are either a relapse case after declaring cure when treated
first or failure case or default case (Chauhan, 2008). Other sputum smear positive cases that
are not seriously ill or extra–pulmonary cases are put in Category III regimen 2 (HRZ)3/4
(HRE)3. The Senior Treatment Supervisor (STS) maintains a register called the TB register,
in which the details of all the patients are recorded. All patients are given a unique ID number
through which they are referred to further. Then, on the basis of the outcome of the treatment
they are put in the following categories:

1. Cured: Patients, who initially tested as positive, complete the treatment and test negative,
are put under this category.
2. Treatment completed: Smear positive patients who turn smear negative after the com-
pletion of treatment.
3. Default: Patients who after registration do not take their dosage for two months or more.
4. Expired: Patients who have died during treatment, regardless of cause.
5. Failure: Smear positive cases who are smear positive at five months or more after
starting treatment. Also patients who were initially smear negative but who became
smear positive during treatment.
6. Transferred out: Patients who have been transferred to another Testing Unit (TU) or to
some other place and their treatment results are not known.

Ladakh is famous for its monasteries. Among monks the stigma against TB is relatively less.
If monks get infected by TB, they are not ostracized from the monastery. They are given an
isolated room, where they can recover, while carrying on with the mediation, and also seek
their Guru’s blessings. Yet, they say that acquiring such types of diseases indicates that one
had done some sins in the past life. Suffering from TB in this life is only a consequence of
bad deeds of the previous births. As reported by the Senior Treatment Supervisor (STS,
Leh),

The health disparities in the recent past have been reduced by meticulous efforts by the
Government and NGOs. The change in the mindset of the people will come gradually.
DOTS is making a progress though slow and this is quite evident by the high detection
rate.

There are problems of logistics. There was only one vehicle used by the DOTS staff for
procuring medicines from Srinagar. The same vehicle is used for staff to go to villages and
also to use in case of an emergency. This created lots of problem for them as when the vehicle
was being used for one task, another had to wait. When diverse key informants were inter-
viewed, reports of some medical personnel themselves divulged how the medical personnel
themselves practiced stigma against TB patients. A senior nurse at the hospital said that she
would rush out of the TB ward and take fresh air frequently and would hurriedly check up
the TB patients in fear of contracting the disease herself. Such acts when interpreted by the
patients create horror in their mind.

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Role of NGOs and Private Health Services

There are only two NGOs that focus on health. Their activities are confined to make people
aware of the facilities available to prevent HIV. Thus they are operating as health workers.
They are attempting to disseminate correct and comprehensive knowledge about HIV and
fight the stigma. They also refer TB patients to the VCTC (Voluntary Counseling and testing
Centre). Whenever, they organize focus group discussions, or they conduct seminars at the
schools, they invite doctors and medical personnel to spread awareness about HIV/AIDS
and promote preventive measures. The non–governmental organizations (NGOs) have not
been quite active as far as provisions of health facilities are concerned. This is largely due
to lack of funds and infrastructure and other legalities that are required to initiate activities
in the health sector. There are a few local medical practitioners in Leh. People go to them
for various problems but for the DOTS regimen, all patients have to go to the DOTS centre.
There are a handful of patients who seek refuge in meditation and therefore join a monastery
to cure the disease through practice of austerity measures under the guidance of a religious
guru.

Quality of Relationships
The respondents were asked about their relationship with their family and friends. The re-
searcher attempted to explore the effect of one’s being diagnosed as a TB patient as it affects
the relationships. Stigma attached to TB is sure to affect one’s relationship. It is manifested
in the behavioral patterns of others. The researcher asked the respondents to rate their rela-
tionship with their spouse, family member, relative, friend, colleague and neighbor. Table
11 exhibits the distribution of respondents according to the quality of relationships. The table
shows that despite TB the respondents have good relationship with spouse, family members,
relatives, friends and colleagues. However, this may not prove that there is no stigma against
TB. Stigma may reduce patients’ expectations from relationships. Also sometimes people
may show more affection towards people suffering from stigmatized condition including
TB.

Table 11: Quality of Relationships after Getting Diagnosed as TB Patient

Relationship Very good Good Medium Bad Very bad No relation
Spouse 27.2 28.9 9.6 2.4 2.4 2.4
Family member 31.9 42.8 22.3 1.2 0.0 1.8
Relative 16.9 48.8 31.9 0.6 0.0 1.8
Friend 30.1 41.6 25.9 2.4 0.0 0.0
Colleague 13.3 44.0 37.3 2.4 0.6 2.4

In practice one finds that different forms of stigma were affecting people suffering from TB.
Some of them suffered from low self esteem, others with avoidance, ignorance, and still
others with discrimination and fear of contagion. A vegetable vendor reported,

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Now that people see me constantly coughing, they have a negative attitude towards me
at the mandi. I have lost so many customers. I must have done some sinful act for which
I am being punished like this.

Support System
Suffering from a chronic disease such as TB is quite painful. To face the harsh reality, people
need a good support system. This gives them the strength to bear with their pain. Emotional
support is of primary importance. One may say that TB patients under treatment need strong
emotional support. Table 12 presents data on who is the main source of emotional support
to respondents. It is clear from the table that in order of frequency of a reported source the
sources of support are: spouse, mother, sibling, father, friend, a close relative, a colleague
at the work place, and community members.

Table 12: Source of Emotional Support for TB Patients

Source of Emotional Support Percentage
Father 10.2
Mother 23.5
Spouse 37.3
Sibling 11.4
Close relative 6.6
Friends 8.4
Work place 1.8
Community 0.6
N=166

Myths, Misconceptions and Experiences

All cultures have some distinct cultural traits, mores, myths, folklores and totems and taboos.
Similarly for Ladakhis who have such a rich and unique cultural baggage. Since they do not
have direct interaction with the world outside Ladakh, their knowledge access is limited.
This results in sustenance of certain myths and misconceptions which could only be thought
with scientific knowledge. Here, it needs to be mentioned that there is a hairline difference
between myths and misconceptions and both reinforce each other.
There is a saying in Ladakh: “Illness is caused by lack of understanding”. There are certain
myths such as eating of cow meat, drinking of Ladakhi butter tea, and cooking bread on as-
bestos plate causes TB. Some communities, residing in particular areas of Ladakh, were re-
ported to have more incidence of TB, than others. TB was also believed to have been spread
by labors and migrants who come to Ladakh for petty jobs. Therefore, in-migrants are often
stigmatized.
Observations show there is a stigma related to TB. To ward off the researcher, women
respondents will simply say they have never heard of it. Ladakhis are very shy and conser-
vative in nature. When probed further, a male respondent said,

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As long as I don’t cough continuously, and show other symptoms, no one will know I
am suffering with TB.

He indicated that since he worked as a taxi driver, he was away from home quite often, and
hence, even his family was not aware of his condition. He did get himself tested but could
not continue the DOTS regimen. In order to explain stigma multiple regression analysis was
used with stigma as dependent variable and the following variables as independent variables:
age, sex, literacy, caste, religion, residence, marriage, BPL status, income, whether suffering
from ill health, awareness of STI, and whether heard about VCTC (Table 13). Except age
all other variables were transformed into dichotomous variables. It was found that males,
illiterates, those belonging to other religions, outside Leh, not currently married, APL and
in higher income bracket, and lacking in awareness of STI and VCTC show higher stigma.
Yet, it was found that none of the explanatory variables explained stigma significantly. R-
square is only .055 and is statistically insignificant (F = .700 and p = .749). The inference
is that there is no relationship between demographic and socio-economic characteristics of
the respondents and the stigma.

Table 13: Multiple Regression Analysis

Unstandardized Standardized t Sig.
Coefficients Coefficients
B Std. Beta
Error
(Constant) 3.89 0.46 8.45 0.00
Age 0.00 0.01 -0.01 -0.14 0.89
Sex (F=1, M=0) -0.02 0.08 -0.03 -0.30 0.76
Literacy (L=1, Others =0) -0.05 0.08 -0.05 -0.56 0.57
Caste (ST=1, Others =0) -0.07 0.10 -0.06 -0.67 0.50
Religion (Buddh=1, Others =0) -0.03 0.14 -0.02 -0.23 0.82
Residence (Leh=1, Others =0) -0.08 0.09 -0.08 -0.89 0.37
Marriage (Currently married=1, Others -0.05 0.11 -0.05 -0.46 0.64
=0)
BPL card (Yes=1, Others =0) -0.08 0.08 -0.09 -1.00 0.32
Income (High income=1, Others =0) 0.09 0.09 0.10 1.01 0.31
Ill health (Yes=1, Others =0) 0.09 0.10 0.08 0.88 0.38
Awareness of STI Clinic (Yes=1, -0.14 0.11 -0.11 -1.29 0.20
Others =0)
Heard about VCTC (Yes=1, Others =0) -0.11 0.09 -0.11 -1.22 0.22

In sociology stigma has been studied mostly in the framework of interactionism which the-
orizes the relationship between social structure and human agency. George Herbert Mead

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and Herbert Blumer are the founding fathers of this theory (Blumer, 1969; Blumer and Mead,
1980). They focused on the process of collective meaning creation rather than individual
action. In great use after World War–II, it was accepted and applied by those sociologists
who were dissatisfied with the functionalist and positivist orthodoxy in sociological theory
(Fine, 1993). Such sociologists favored use of qualitative and interpretive methods over
quantitative and statistical methods used by their predecessors.
Then identity theory focused on how individuals tend to choose certain roles from among
the various alternatives available and explain them maintaining relative stability of self or
identity salience (Serpe, 1987). This theory links identity with social structure by introducing
on another concept of commitment. It says that individuals have interactional and affective
commitments to social relationships. The former refers to extensiveness or number of social
relationships associated with a role and intensiveness or affect associated with loss of social
relationships and activities associated with an identity. Drawing from Mead’s sociological
writings and the works of cognitive social psychologists and personality theorists Stryker
(2008) supported the theory of structural symbolic interactionism. According to Stryker,

[structural symbolic interactionism] view sees social differentiation as a continuous

process countering homogenization of interactional experience and the structures
within societies. It sees society as composed of organized systems of interactions and
role relationships and as complex mosaics of differentiated groups, communities, and
institutions, cross-cut by a variety of demarcations based on class, age, gender, ethnicity,
religion, etc. It sees the diversity of parts as sometimes interdependent and sometimes
independent of one another, sometimes isolated and insulated from one another and
sometimes not, sometimes cooperative and sometimes conflicting, sometimes highly
resistant to change and sometimes less so. It sees social life as largely taking place not
within society as a whole but within relatively small networks of role relationships,
many—perhaps most—local.

There is a strong cultural affect on treatment seeking behavior of the Ladakhis. They attach
high “morality” dimension with the disease. Since this study was conducted on people suf-
fering from tuberculosis, there was stigma attached with that also. So, in a nutshell, there is
double stigma: related to morality and also against TB. Due to stigma TB patients hesitate
to disclose their positive status to others.
Some of the recent works on stigma stress on social exclusion which has a deep impact
on an individual’s access to equal opportunity. Defined as “the process through which indi-
viduals or groups are wholly or partially excluded from full participation in the society
within which they live” Two crucial dimensions involving the notion of exclusion are:

• Societal institutions (of exclusion)

• Outcome (in terms of deprivation)

Exclusion is defined as a consequence of the formation of group monopolies. It is “process

through which individuals or groups are wholly or partially excluded from full participation
in the society within which they live” (de Haan, 1998).
Social exclusion has a great impact on an individual’s access to equal opportunities-be it
regarding health, education or justice. It is understood to be leading to disparities between

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social groups. Here the researcher has explored and briefly mentioned how the notion of
social exclusion enters the larger debate of stigma. An attempt is made to see how stigma
leads to social exclusion of TB patients at Ladakh. There was emphasis on the need for un-
derstanding the social processes, attitudes and practices that are responsible for the continued
social exclusion.

• Active exclusion: fostering of exclusion through the deliberate policy interventions by

the government, or other agents.
• Passive exclusion: works through the social process in which there are no deliberate at-
tempts to exclude, but nevertheless, may result in exclusion.

Amartya Sen (2000) refers to various manifestations of social exclusion with respect to
causes of discrimination and deprivation in a particular group. In India, exclusion revolves
around the societal inter-relations and institutions that exclude, discriminate, isolate and
deprive some groups on the basis of the group’s identities like caste and ethnicity. Discrim-
ination is an outcome of exclusion. It can be practiced through denial of jobs, access to re-
sources supplied by the government, public or private institutions, in education, housing,
health and so on. In Ladakh, though social exclusion is not apparently evident, it is existent
in a mild form. It is a close knit community, and hence, people suffering from TB find it
hard to hide the fact that they are TB positive. The narratives confirm the same.
It seems that the medical institutions propagate stigma and exclusion through various
methods. One of the instances is the situation of the TB ward outside the main building of
the hospital. It is located just next to the mortuary which gives a very gloomy picture to the
ward inmates who are already distraught.
Though the Sonam Nubro Memorial (SNM) Hospital has the entire basic infrastructure
and provides all basic facilities up to an extent, it does not have a specialist for TB. This
aggravates the situation as not all the doctors are ready to see a TB patient. They are ignored
and sent from one doctor to another. The nurses deployed in the TB ward also show a very
casual attitude towards the TB ward inmates. They spend minimal time inside and asked the
researcher to do the same. On the other hand, religion gives the people the power of tolerance
which further leads to inclusion of people suffering from TB. They do not isolate or exclude
a person from family or society. They do maintain a safe distance so as to prevent the infection
from spreading but no harsh behavior is portrayed. Complexities are also portrayed through
gender disparities. The study shows that women stand a higher risk of stigma and exclusion
if the community gets to know about their positive status. It would be difficult for women
to hide from relatives and neighbors that they suffered from TB. Chances of her marriage
would get affected. Women are afraid that they will be “spoken ill about”. The stigma of
TB is more visible in women than in men when it comes to marriage. Moreover TB in pul-
monary sense is only perceived and people are not aware of having extra-pulmonary TB.
Airborne transmission was not known fully. As far as HIV is concerned, people are not sure
of getting themselves tested and neither aware about the facilities available.
A young respondent’s mother told how she was worried about her daughter’s health. She
said,

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My daughter works in a beauty parlor. She looks pale and ill. After she was diagnosed
with TB, she stopped going to the parlor. She also started isolating herself from her
social circle. It was when we started looking for a groom for her and forced her to seek
treatment, did she sought DOTS.

Conclusion
In sum, it can be said that though all respondents suffered from TB, their experiences differed.
In case of women, risk of exclusion and being stigmatized is more as compared to male.
Factor analysis and regression analysis shows that stigma is a cultural issue and is very little
affected by socio-economic and demographic variables. Though there is a weak stigma, it
exists at all levels: individual, communal and societal. Interestingly, it is not related to dem-
ographic and socio-economic factors. Thus, although a matter of labeling, it is the net result
of various processes of differentiation. HIV communication, medical practices, religious
attribution and religious approach cause a complex situation pulling stigma in different dir-
ections. Overall it definitely affects and obstructs an individual’s testing and treatment
seeking behavior and leads to non-disclosure of one’s positive status. One seeks treatment
when the situation goes out of hand. Modern propaganda and medical practices are leading
to exclusion; religion has the power to lead to inclusion. 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 de-
velopment of innovative health strategies in the region through community based support
structure. Provision of comprehensive knowledge and Buddhist view of love and compassion
could be used in removing misconceptions about HIV and exclusion of the labeled people.

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About the Authors

Sonal Mobar
Sonal Mobar earned her Post graduate degree in Social Anthropology from Lucknow Uni-
versity, 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 So-
ciology 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 eth-
nographic work reveals the true nature of the issue concerned. The fieldwork was funded
by the Parkes Foundation, UK.

Prof. A.K. Sharma

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.

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