Cultural concepts of tuberculosis and gender among the general

population without tuberculosis in rural Maharashtra, India

Sachin R. Atre1, Abhay M. Kudale1, Sudhakar N. Morankar1, Sheela G. Rangan1 and Mitchell G. Weiss2

1 The Foundation for Research in Community Health, Pune, India2 Swiss Tropical Institute, Basel, Switzerland

Summary Gender-specific patterns of experience,meaning, andbehaviour for tuberculosis (TB) require consideration

to guide control programmes. To clarify concepts of gender, culture, and TB in a rural endemic population

ofMaharashtra, India, this study of 80men and 80women employed qualitative and quantitativemethods

of cultural epidemiology, using a locally adapted semi-structured ExplanatoryModel InterviewCatalogue

(EMIC) interviews are instruments for cultural epidemiological study of the distribution of illness-related

experiences, meanings, and behaviours. This interview queried respondents without active disease about

vignettes depicting a man and woman with typical features of TB. Emotional and social symptoms were

frequently reported for both vignettes, but more often considered most distressing for the female vignette;

specified problems included arranging marriages, social isolation, and inability to care for children and

family. Job loss and reduced income were regarded most troubling for the male vignette. Men and women

typically identified sexual experience as the cause of TB for opposite-sex vignettes. With wider access to

information about TB, male respondents more frequently recommended allopathic doctors and specialty

services. Discussion considers the practical significance of gender-specific cultural concepts of TB.

keywords gender, tuberculosis, cultural epidemiology, stigma, help seeking, vulnerability

Introduction

Mycobacterium tuberculosis has infected one-third of the

world’s population and imposes a global burden of an

estimated 8 million new cases and 1.8 million deaths

yearly (WHO 2002). The morbidity and mortality caused

by tuberculosis (TB) currently place it among the highest

priorities for disease control. India ranks first among high-

burden countries for TB (Floyd et al. 2002), and every year

2.2 million people are added to the existing 15 million

cases as 450 000 die (Misra el al. 2003). Although effective

treatment for curing TB has been available for several

decades, the control of TB in developing countries has been

particularly complex. This is because, apart from structural

problems, TB control efforts have been affected by socio-

cultural barriers and ‘gender’, which influence TB at every

stage from symptom awareness to outcome of the disease

(Uplekar et al. 2001). Being sensitive areas to study,

document and quantify, relevant socio-cultural aspects of

control remain neglected by both policy makers and

programme implementers.

Gender perspective

Many aspects of health policy and programming generally

and specific features of TB control require careful attention

to the role of gender (Vlassoff & Moreno 2002). The

framework outlined by Uplekar et al. (2001) indicates the

various ways in which gender may be relevant to strategies

for control, suggesting a number of questions that require

study.

A gender perspective may help to clarify observed

differences in rates of TB between men and women,

accounting for social contexts of exposure and differential

vulnerability to infection. Attention to gender should also

help to explain known sex differences in the accessibility

and utilization of health care resources, and to show how

social meanings influence social responses and the stigma

targeting people with TB. Social discrimination on the

basis of TB disease status may result from various factors,

such as perceived dangerousness and contagiousness, or

adverse judgments that attribute the condition to immoral

behaviour and blame the victim for acquiring the disease.

Social determinants of support and rejection influence the

ways that people in the general population without TB

interact with people who are symptomatic from the disease

(Vlassoff et al. 2000).

Epidemiological evidence indicates that TB everywhere,

including low- and middle-income countries, is more

prevalent among men than women. This fact may be

explained by gender differences in the social pattern of

interactions, as men have more chance of social mixing

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volume 9 no 11 pp 1228–1238 november 2004

1228 ª 2004 Blackwell Publishing Ltd

with people outside the home, including people with TB,

whereas women are more likely to spend most of their time

in the community around their homes (Liefooghe 1998).

Several studies have examined the influence of gender on

help-seeking behaviour for TB and indicate the need for a

better understanding of the role of behavioural factors in TB

control (Rangan&Uplekar 1998; Hudelson 1999).Women

appear more likely to neglect their illness until they become

too sick either to lead their normal lives or even to seek

medical help (Finch et al. 1991; WHO 1991). Review of

Liefooghe et al. (1997) shows that women face more

barriers to reach needed treatment for TB than men, which

can be attributed to cultural ideas about women’s more

restricted role in the home and community; this makes them

less likely to seek help outside. A study by Needham et al.

(2001) among pulmonary TB patients in Lusaka, Zambia,

reported greater lag time (including patient and provider

delay) fromsymptomonset to diagnosis forwomen.Delayed

help seeking (HS) arising from gender disparities in access

and perceived needs and entitlements to care may also play a

significant role in Maharashtra and other parts of India.

Stigma may delay HS and lead patients to drop out of

treatment. Because of their social vulnerability, women

may be especially susceptible to the impact of stigma.

Research in Kerala, India, suggests that stigma may

adversely influence participation in the DOTS pro-

grammes, resulting in poorer treatment outcomes, and this

effect of stigma may be more pronounced among women

(Balasubramanian et al. 2000).

Cultural epidemiology of tuberculosis

As a framework for studying the social determinants of

health problems, cultural epidemiology arose from efforts

to apply an integrated formulation of anthropological and

epidemiological principles to health research (Weiss 2001).

Cultural epidemiology is concerned not only with rates of

disorders but also the distribution of categories of illness-

related experience, meaning, and behaviour. Findings from

anthropological research identify the locally relevant

aspects of illness that influence risk and response, sug-

gesting a causal web of interactions linking culture, gender

and illness; cultural epidemiological study further examines

the findings of ethnographic study to clarify their distri-

bution of categories and their impact on TB control (Weiss

2001). Such socio-cultural health studies are concerned

with patterns of personal distress (PD), social stigma,

perceived causes (PC) and HS for TB. To study the patterns

of TB-related experience, meaning, and behaviour in the

general population, male and female vignettes depicting

typical features of TB have been used as the focus of

interview questions.

This report presents findings from socio-cultural study of

TB as it is explained in the general population. It was

conducted in villages of rural Pune District, Maharashtra,

India. The objective of this study was to specify the

distribution of TB-related illness experiences, meanings

and behaviours, examining categories of PD, PC, and HS

with reference to narrative contexts of respondents’

accounts, as reported by the general population of people

without TB. It also aimed to identify gender differences

among men and women interviewed with questions about

a vignette describing someone of the same sex as the

respondent and someone of the opposite sex.

Methodology

Setting and sample selection

Pune district is located in the western part of Maharashtra

State in India. The District TB Centre (DTC) is located in

Pune City and serves a population of about 3.6 million

people in rural areas and 2.7 million in urban areas. The

Revised National Tuberculosis Control Programme

(RNTCP), which follows the policy guidelines of the

WHO’s DOTS strategy, was implemented in the district in

October 1998. Although the annual case detection rate

remained 187 per 100 000 for India in the year 1999

(WHO 2001a), rates in rural areas were lower (nearly 70

per 100 000) (DTC 1999). The study took place at a time

when a major shift in the programme (from the former

National TB Programme to the RNTCP) was underway.

Rural areas were selected for the present study of gender

and TB, attentive to differential barriers to health services,

educational status of women, and access to household

resources. In rural areas of the district, farming is a

predominant occupation, followed by unskilled agri-

cultural labour. Women are housewives and also involved

in farm work on either family-owned or other’s land. To

earn a livelihood, a significant proportion of the male

population is moving in and out of crowded slum areas in

big cities such as Pune and Mumbai, which also presents a

threat of transmitting infectious diseases.

A total of 20 villages, where patients have been

registered and treated in the National TB Programme were

selected randomly for the study from six tehsil (subdistrict/

administrative units) of Pune District within a radius of

60 km from Pune city. To elicit community perceptions of

TB and people who have it, 160 respondents (80 men and

80 women) who personally and whose immediate family

members did not currently have active TB were studied

with EMIC interviews. A sample was drawn from these

villages using a multistage sampling procedure. The sex

and age distribution of the sample is specified in Table 1.

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S. R. Atre et al. Culture, gender, and TB in India

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EMIC interview for community study

EMIC interviews are instruments for assessing represen-

tations of illness or specified health problems from the

perspective of affected persons, their families, or (as in

this study) their community. These interviews were

developed and locally adapted in pilot testing, and the

research interviews were completed between November

1998 and June 1999. Female researchers interviewed

women respondents and male researchers interviewed

men. A systematic ‘spontaneous and probe’ methods

for eliciting responses to open-ended and prompted

queries was adapted. Response categories of PD, PC, and

HS that were coded from the narrative content of

answers to open-ended questions were designated spon-

taneous. Responses that were coded based on acknow-

ledgement or rejection of categories specified in the

question were designated probed. The EMIC interviews

studied patterns of distress, which referred not only to

the disease-specific symptoms, but also to the broader

range of effects of TB. Stigma, constituting an aspect of

the adverse social impact of the disease, was studied.

Perceived causes were elicited to examine respondents’

ideas about the meaning of TB. Recommendations for

HS, sources of information about TB, and personal

interactions with people with TB were studied to provide

a descriptive cultural epidemiological account suitable for

gender comparison.

The structure of the EMIC interview used in this study

is outlined in Appendix 1. The male and female

vignettes, depicting classical symptoms of TB in a local

cultural context, which were the reference for the EMIC

questions, are presented in Appendix 2. The interview

schedule was pretested in eight villages, and the initial

phase of pretesting provided an opportunity to train

interviewers. Subsequent pretesting with these trained

interviewers evaluated questions under field conditions.

Interview data consisting of codes that were marked on

the interview sheet and qualitative narrative accounts, were

maintained separately. An interviewer and a data recorder

participated in each interview, and the coding was

discussed for a consensus rating.

Analysis

Bivariate analysis using Epi Info, version 6 compared

responses concerning male and female vignettes for

categories of distress, stigma, PC, and other variables

elaborated in the EMIC interviews. Spontaneous and

probed responses, wherever applicable, were tabulated in

frequency tables. The Cochran-Armitage trend test was

used to test the significance of associations for cross-

tabulated data, acknowledging the greater prominence of

spontaneous, compared with probed responses. The

chi-square test was used for a single level of reporting

(e.g. most important perceived cause).

Qualitative gender differences were examined using the

MAXqda software program to compare coded text seg-

ments from the interview responses for male and female

vignettes and for men and women respondents. Coded text

segments, based on topics of the cultural epidemiological

framework studied with the EMIC interviews, were

retrieved from selected respondents to facilitate qualitative

comparison of narrative accounts, examining topics in

context.

Results

Sample characteristics

Among the 160 respondents, 62% were below 45 years

of age, with a mean age of 39.7 years (39.4 years for

women and 39.9 years for men). Most (88%) respond-

ents were married, and one-third (33%) of the respond-

ents were illiterate. Most (78%) women respondents

were engaged in household work, and many of these

were also engaged in unpaid labour on their family-

owned land. Most of the male respondents were involved

in farming, and others worked as unskilled labourers and

in small-scale merchandising.

Recognition of tuberculosis

The majority (62%) of respondents identified the health

problem depicted in the vignette as TB. Asthma, cough,

AIDS, and pneumonia were the other conditions reported

by the remaining respondents. Less than one in five (17%)

respondents could not specify any name for the health

problem depicted in the vignette, and there were no

differences in the responses of men and women

respondents.

Table 1 Sample distribution

Agegroup

(years)

Male vignette Female vignette

Menrespondents

(N ¼ 40)

Womenrespondents

(N ¼ 40)

Menrespondents

(N ¼ 40)

Womenrespondents

(N ¼ 40)

20–29 10 10 10 10

30–39 10 10 10 10

40–49 10 10 10 1050–59 10 10 10 10

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Associated problems (patterns of distress)

The common complaints for TB such as cough, fever,

weight loss and weakness were presented in the vignette

and respondents were asked to identify other problems

experienced by such patients. Approximately 36% of the

respondents reported additional physical complaints, such

as chest pain, blood in sputum, breathlessness and side-

effects of drugs spontaneously without prompting, and

58% reported additional illness-related symptoms and

problems when prompted from a list, with reference to the

vignettes. Some respondents (17%) also reported unrelated

physical symptoms (Table 2).

Somatic symptoms and ‘other’ problems were typically

reported spontaneously, whereas social, psychological and

financial problems were mentioned only after probing.

Financial problems, including job loss (P < 0.1) and

reduced family income (P ¼ 0.07), were reported more

frequently for the male than for the female vignette.

Analysis revealed spontaneous reporting of social prob-

lems for the female vignette by women respondents

(P ¼ 0.02) as compared with male respondents. Similarly

for the male vignette, more male respondents reported loss

of job (P ¼ 0.01) and reduction in family income

(P ¼ 0.04).

The narrative accounts below from EMIC interviews

indicate how respondents account for such problems

affecting the daily course of life.

In the work place, there will be so many people

working, so surely they will not allow the diseased

person to work amongst them. Also, because of the

illness, he himself won’t be able to work. Then they

may decide not to continue him. (60-year-old woman)

Problems will obviously be on the financial side….

Service or business will be lost or will become slack.

Then where will the money come from? (53-year-old

man)

Table 2 Patterns of distress associatedwith female and male vignettes, reported

spontaneously and after probing, and

tabulated for individual categories and

groupsCategory of distress

Female vignette (%)

(N ¼ 80)

Male vignette (%)

(N ¼ 80)

Both Vignettes (%)

(N ¼ 160)

Spontaneous Probed Spontaneous Probed Spontaneous Probed

Additional physical

complaints

36.3 57.5 36.3 58.8 36.3 58.1

Chest pain 6.3 73.8 2.5 78.8 4.4 76.3

Blood in sputum 16.3 55.0 16.3 60.0 16.3 57.5Breathlessness 21.3 62.5 22.5 66.3 21.9 64.4

Side-effects of drugs 5.0 13.8 0.0 8.8 2.5 11.3

Unrelated physical

symptoms

12.5 3.8 16.3 1.3 14.4 2.5

Social problems 20.0 76.3 16.3 78.8 18.1 77.5

Isolation within family 13.8 73.8 10.0 73.8 11.9 73.8

Problems in family 3.8 68.8 3.8 63.8 3.8 66.3Social isolation 10.0 67.5 11.3 63.8 10.6 65.6

Stigma 8.8 66.3 8.8 63.8 8.8 65.0

Marital problems 2.5 85.0 1.3 80.0 1.9 82.5

Financial problems 3.8 73.8 3.8 83.8 3.8 78.8

Loss of job/wages* 3.8 63.8 2.5 78.8 3.1 71.3

Reduction in family

income*

2.5 71.3 2.5 83.8 2.5 77.5

Psychological problems 13.8 83.8 8.8 88.8 11.3 86.3

Sadness, anxiety 7.5 88.8 5.0 91.3 6.3 90.0

Anxiety regarding job 2.5 88.8 1.3 93.8 1.9 91.3

Anxiety regarding finances 3.8 85.0 3.8 90.0 3.8 87.5Anxiety regarding family 3.8 85.0 1.3 88.8 2.5 86.9

Concern about disease 3.8 87.5 5.0 87.5 4.4 87.5

Uncertain/cannot say 11.3 0.0 7.5 1.3 9.4 0.6

*P < 0.1 (Cochran-Armitage trend test) for differences between responses for female and

male vignettes.Vignettes specify cardinal symptoms, including persistent cough, fever, weakness, weight

loss, and loss of appetite. Because these were presented to the respondents, they are not

among patient-reported symptoms in this table. See Appendix 2.

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S. R. Atre et al. Culture, gender, and TB in India

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What will happen to the family and her children?

What will happen to her life? Since she will be unable

to work outside, she has to work in the home. She

may start feeling that if I was in good health, I would

have earned money for the family and me. (53-year-

old woman)

Stigma: indicators of stigma

Nine interview questions were formulated as indicators of

stigma. Most respondents (85%) acknowledged dimin-

ished self-esteem as a feature of the illness depicted in

the vignettes, explaining that such people think less of

themselves and that they hide their disease from others

(Table 3). A 38-year-old man explained why disclosing TB

was a greater problem for women:

A woman will hide the disease more than a man

because she will have a fear of social isolation and less

respect from others.

About half (48%) of the respondents said that people are

likely to treat such a person with TB in ways that would be

embarrassing. About 60% of respondents anticipated

support from a spouse for both vignettes. The narrative

accounts of social responses indicated that a woman was

obliged to support her husband with such a disease, but a

man did not have the same obligation to support his wife.

In fact, many considered the man free to leave her, or he

could send her to her parent’s home. Some women, like the

middle-aged respondent quoted below, resented that:

Men don’t have any problem, but a woman has to

handle everything. Even if her husband is ill, she has

to look after him and treat him well because her

husband is the only support for lifetime and to take

care of husband is her duty. But she can’t expect this

kind of help from her husband if she falls ill. Such is

the fate of women.

Problems in an ongoing marriage were reported more for

the female vignette (P ¼ 0.09). In addition, qualitative

accounts emphasized the impact of the illness on the ability

of a woman to marry. People did not want their sons to

marry a girl who has had TB because of fear of the disease

getting passed on to her children. It is widely accepted that

when a girl develops TB after her marriage, she is often sent

back to her natal house, and the man will then marry

another girl. Women were not more concerned, however,

about problems arranging a marriage, and it appeared that

among respondents, more men identified this as a potential

problem (P ¼ 0.1).

Perceived causes

Respondents identified various categories of PC, which

were grouped under nine broad headings, and these

findings are summarized in Table 4. Most respondents

identified categories under the headings ingestion (89%)

and health-injury-illness (97%) as common causes for TB

for both vignettes.

Addictions (smoking, alcohol, and drugs) as a cause of

TB, were specified significantly more often for the male

vignette. However, significantly more male respondents

also mentioned the same causes for the illness in the

female vignette (P < 0.0001) also. Prior health care

problems or injuries, environmental factors and sexual

experiences were commonly reported as the most

important cause of TB. In response to the interviews

based on the female vignette, significantly more women

than men reported health-illness-injury (30% vs. 7.5%)

and psychological factors (17.5% vs. 0%) as the most

important perceived cause. Although women specified a

psychological cause more frequently for the female

vignette, no men identified a psychological cause as most

important for either of the vignettes.

More male respondents mentioned ‘contact’ as a cause in

case of female vignette than women (P ¼ 0.004). Men

more frequently identified sexual experience as the most

important perceived cause for the female vignettes than

women respondents (P ¼ 0.05), and both men and women

more frequently identified sexual experience as a cause in

the opposite sex. For some respondents sexual relations in

the absence of disease were sufficient to transmit TB, but

Table 3 Indicators of stigma for female and male vignettes

Stigma variables

Female vignette

(N ¼ 80) (%)

Male vignette

(N ¼ 80) (%)

Yes Possibly Yes Possibly

Hide disease 75.0 6.3 81.3 7.5Think less of self 85.0 2.5 85.0 3.8

Community thinks less

of patient

68.8 5.0 67.5 12.5

Community thinks lessof family

42.5 8.8 35.0 12.5

Hurting behaviour 32.5 21.3 28.8 15.0

Problems in arranging

marriage

15.0 27.5 12.5 36.3

Spouse support 57.5 37.5 58.8 28.8

Problems in current

marriage

10.0 16.3 21.3 17.5

Problems in family

to marry

23.8 27.5 28.8 22.5

There were no statistically significant differences between

responses for female and male vignettes.

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S. R. Atre et al. Culture, gender, and TB in India

1232 ª 2004 Blackwell Publishing Ltd

Table 4 Perceived causes associated with

female and male vignettes, reported

spontaneously and after probing, andtabulated for individual categories and

groupsPerceived causes

Female vignette (%)(N ¼ 80)

Male vignette (%)(N ¼ 80)

Both vignettes (%)(N ¼ 160)

Spontaneous Probed Spontaneous Probed Spontaneous Probed

Uncertain/cannot say 21.3 00.0 20.0 0.0 20.6 0.0

Ingestion 27.5 56.3 33.8 60.0 30.6 58.1

Food 12.5 18.8 13.8 23.8 13.1 21.3

Water 3.8 22.5 10.0 21.3 6.9 21.9

Contaminated food/water

6.3 47.5 8.8 33.8 7.5 40.6

Contaminated food

vector

2.5 48.8 2.5 45.0 2.5 46.9

Alcohol* 3.8 27.5 18.8 62.5 11.3 45.0

Smoking* 2.5 27.5 13.8 67.5 8.1 47.5

Tobacco/misheri 8.8 51.3 11.3 58.8 10.0 55.0

Abused drugs* 2.5 35.0 8.8 66.3 5.6 50.6

Health-illness-injury 33.8 62.3 26.3 71.3 30.0 66.9

Prescribed medicines 2.5 10.0 3.8 7.5 3.1 8.8

Injury/accident 0.0 18.8 1.3 16.3 0.6 17.5Insect bite 0.0 22.5 1.3 21.3 0.6 21.9

Physical exertion 1.3 30.0 1.3 31.3 1.3 30.6

Blood problems 0.0 72.5 3.8 82.5 1.9 77.5

Prior illness 18.8 47.5 16.3 60.0 17.5 53.8Pregnancy/child birth 1.3 35.0 0.0 21.3 0.6 28.1

Congenital 3.8 36.3 0.0 38.8 1.9 37.5

Weakness 15.0 57.5 11.3 58.8 13.1 58.1

Heredity 12.5 40.0 2.5 57.5 7.5 48.8

Psychological 12.5 40.0 2.5 57.5 7.5 48.8

Mental stress 3.8 35.0 2.5 30.0 3.1 32.5

Mind worry 8.8 41.3 7.5 37.5 8.1 39.4

Environmental 26.3 70.0 28.8 70.0 27.5 70.0

Sanitation 7.5 63.8 5.0 71.3 6.3 67.5

Air pollution 2.5 52.5 2.5 60.0 2.5 56.3Personal hygiene 3.8 70.0 3.8 75.0 3.8 72.5

Germ/infection 8.8 80.0 11.3 67.5 10.0 73.8

Contamination/contact 6.3 65.0 6.3 63.8 6.3 64.4

Proximity to patient 8.8 72.5 12.5 70.0 10.6 71.3Air borne 2.5 65.0 5.0 62.5 3.8 63.8

Traditional/cultural 6.3 50.0 6.3 47.5 6.3 48.8

Pollution 0.0 33.8 0.0 30.0 0.0 31.9Ayurvedic concept 0.0 27.5 0.0 27.5 0.0 27.5

Heat/cold in the body 5.0 25.0 2.5 28.8 3.8 26.9

Climate 1.3 16.3 3.8 15.0 2.5 15.6

Sexual experience 16.3 56.3 15.0 45.0 15.6 50.6

Supernatural-karma-

traditional

11.3 32.5 6.3 42.5 8.8 37.5

Karma 8.8 30.0 5.0 35.0 6.9 32.5

Fate/god/stars 10.0 31.3 5.0 40.0 7.5 35.6

Supernatural 1.3 13.8 0.0 26.3 0.6 20.0

Evil eye 0.0 5.0 0.0 10.0 0.0 7.5

*P < 0.01 (Cochran-Armitage trend test) for differences between responses for maleand female vignettes.

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S. R. Atre et al. Culture, gender, and TB in India

ª 2004 Blackwell Publishing Ltd 1233

for others, sex was a risk to the other party only if one had

the disease:

If both are clear then there will not be any problem,

but if one is suffering from the illness then the other

gets affected. (58-year-old woman)

Some of the categories were specified only after probing;

for example, respondents tended not to identify heredity as

a cause unless asked directly. More male respondents

mentioned heredity as a cause of TB for the female vignette

(P ¼ 0.1) and vice versa (P ¼ 0.09). Some respondents

explained that a pregnant woman with a cough might pass

the disease to the foetus:

If a mother has it, then it will pass on to the next

generation. Once it is in the family, it will continue.

(28-year-old woman)

During pregnancy, if there is cough and that remains

for a long time, then it will result in this illness. (40-

year-old woman)

The following account indicates how germs are under-

stood in the community to cause TB, and how they

produce symptoms:

If there are more holes in the lungs, then it will cause

tuberculosis. The person will get cough. Germs will be

there and they will cause swelling. (50-year-old man)

Although there was no difference in reports for male and

female vignettes, more women respondents identified

supernatural and karma-related causes of TB for the male

vignette (P ¼ 0.001).

Outcome of illness

Respondents were asked about the outcome of the disease

generally, and specifically with and without treatment.

Most respondents expressed confidence in the ability of the

available treatment to cure the disease, stating they

definitely thought it could be cured (60%) or indicating

that possibility even if they were not certain of it (29%).

Cure was not just a matter of taking medicines, however,

and many respondents noted that a wholesome diet was an

essential component of effective treatment (Table 5):

After taking an X-ray or consulting the doctor, we can

say that (she has TB). If she starts eating food, one may

expect 50–75% improvement. (28-year-old woman)

By taking regular medicines in consultation with the

doctor, a patient can definitely be cured. His body

and health will improve, paleness will reduce and

freshness will appear again. He can then go and mix

with the people in the community. (A male

respondent)

Men were more optimistic in their expectations of a cure

for the condition for both male and female vignettes. For

the male vignette, 75% of men were more definite about

prospects for cure and 20% indicated the possibility,

compared with 40% of women who were definite about

prospects for cure and 50% who indicated the possibility

(P < 0.01). Men were also more confident about cure for

the female vignette, 75% responding definitely curable and

17% possibly, compared with 50% of women who were

definite and 30% who indicated the possibility of cure

(P < 0.05):

There will be an improvement in the condition, and

we understand that from reduced cough and less

breathlessness. The disease will be cured in some

cases, but it may not be cured in others. (A female

respondent)

Among the indications of cure, respondents specified

relief from somatic symptoms, restoration of appetite, and

the return of a healthy look on the face. Some respondents

emphasized more technical clinical indicators, such as an

improvement in the condition on X-ray; some also referred

to the authority of the doctor, specifying a doctor’s

certification as an indication of cure. A middle-aged

woman said:

After taking an X-ray, the doctor has to tell us. How

can we tell from the face only? If the condition is

really bad, then one can recognize it from the face.

Otherwise only a photo (X-ray) can show the scar on

the rib.

Table 5 Most important perceived cause associated with

female and male vignettes

Perceived cause

Female vignette (%)

(N ¼ 80)

Male vignette (%)

(N ¼ 80)

Women Men Both Women Men Both

Ingestion 7.5 12.0 9.8 7.5 20.0 13.8

Health/injury/illness 30.0 7.5 18.8* 22.5 10.0 16.3

Heredity 5.0 7.5 6.3 2.5 0.0 1.3Psychological 17.5 0.0 8.8* 5.0 0.0 2.5

Environmental 7.5 20.0 13.8 15.0 25.0 20.0

Traditional/cultural 5.0 2.5 3.8 0.0 2.5 1.3

Sexual experience 7.5 35.0 21.3* 10.0 25.0 17.5Karma/traditional 5.0 5.0 5.0 07.5 7.5 7.5

Uncertain 12.5 10.0 11.3 30.0 5.0 17.5*

*P < 0.01 (chi-square test) for differences between women and

male respondents.

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S. R. Atre et al. Culture, gender, and TB in India

1234 ª 2004 Blackwell Publishing Ltd

When they spoke about the medical authority of cure,

respondents typically referred to the X-ray, rather than

sputum examination, which has become the official diag-

nostic method of the RNTCP.

Recommended help seeking

When asked to recommend sources of help for the people

depicted in the vignettes, two-thirds of the respondents

recommended government sources and one-third recom-

mended private doctors for both male and female vignettes.

Compared with women, men clearly preferred the higher

levels of health services, such as rural hospital, TB hospital,

District TB Centre, and government hospital (Table 6). The

reasons for recommending private practitioners were their

easy accessibility and confidence in their effectiveness,

often discussed in their narrative account with reference to

prior positive experience. The lower cost of government

services, however, made them attractive. Seeking help from

a health care provider was not necessarily sufficient in

itself, and for some respondents a broader cultural context

of religious support was important: ‘First we must look to

god, and then we will ask to go to the clinic’, a woman

explained.

Younger people rejected old ideas that discriminated

against women, including assumptions that they should

return to their parents’ house, or that it was unnecessary to

spend money on treatment for a woman. Although such

respondents personally rejected such views, they acknow-

ledged that these were common ideas and values in the

community.

Sources of information

Respondents were asked how people came to know about

the health problems we were asking about. Significantly

more men (74%) than women (15%) identified the mass

media (mainly television and radio) as sources of infor-

mation about TB (P < 0.05). A common reason by which

respondents accounted for this gender difference were that

women’s work leaves little time and less opportunity for

access to mass media. Women were also generally

considered more likely to be illiterate and less mobile.

More men (31%) also identified health services as a source

of information than women (14%), and from interactions

with others in the community (Table 7). A middle-aged

male respondent reported:

I have seen and heard the advertisements (about TB)

on TV and radio. I have also read about this in

government hospitals.

Women were thought more likely to learn about the

disease from their personal and local experience and

interactions with affected family members, neighbours, or

others in the community:

I have seen people who have died because of TB.

(33-year-old woman)

When I was staying in Pune, one of the boys from our

relative’s family was having it. My father also had TB

earlier. I came to know about the disease from going

to the hospital to visit them. (A female respondent)

Table 6 Help seeking reported for female and male vignettes

Help seeking

Female vignette

(N ¼ 80) (%)

Male vignette

(N ¼ 80) (%)

Women Men Both Women Men Both

Home remedies 35.0 32.5 33.8 37.5 12.5 25.0

Self-medication 30.0 30.0 30.0 45.0 27.5 36.3Pharmacist 32.5 30.0 31.3 45.0 30.0 37.5

Health worker 67.5 77.5 72.5 70.0 75.0 72.5

Primary health

centre/subcentre

57.5 35.0 46.3 47.5 35.0 41.3

Rural hospital 40.0 80.0 60.0** 40.0 77.5 58.8**

Government hospital 15.0 72.5 43.8** 30.0 65.0 47.5**

DTC 55.0 77.5 66.3* 52.5 72.5 62.5*

TB hospital 30.0 72.5 51.3** 42.5 65.0 53.8*Public sector 2.5 0.0 1.3 0.0 0.0 0.0

Private doctor-

specialist

0.0 0.0 0.0 0.0 2.5 1.3

Private sector-no

qualification

17.5 32.5 25.0 30.0 30.0 30.0

Private hospital-

nursing home

10.0 20.0 15.0 10.0 15.0 12.5

Traditional healer 37.5 30.0 33.8 37.5 22.5 30.0

Faith healer 25.0 22.5 23.8 30.0 25.0 27.5

*P < 0.05 and **P < 0.01 (chi-square test) for differences

between men and women respondents.

Table 7 Sources of information about TB

Sources

Women (%)

(N ¼ 80)

Men (%)

(N ¼ 80)

Both (%)

(N ¼ 160)

Mass media 15.1 73.9 44.4**

Formal education 2.5 7.5 5.0

Reading material 3.8 11.3 7.5People around 37.5 60.1 48.8**

TB patients 23.8 20.0 21.9

Experience 36.3 13.8 25.0

Health personnel 13.8 31.3 22.5*

*P < 0.05 and **P < 0.01 (chi-square test) for differencesbetween men and women respondents.

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S. R. Atre et al. Culture, gender, and TB in India

ª 2004 Blackwell Publishing Ltd 1235

Discussion

This study of the cultural epidemiology of TB-related

illness experience, meaning, and behaviour highlights

cultural and gender-specific features of TB in the general

population of endemic village communities of Pune

District in western Maharashtra. People were well aware

of the condition; they could identify it from the symptoms

depicted in our research vignettes, and they regarded TB

as a serious health problem. Physical suffering was the

hallmark of the disease. Social and emotional problems,

however, were also commonly reported as important

features of the overall illness experience, but mostly in

response to probe questions about this aspect of the

illness, rather than reported in spontaneous answers to

open-ended queries. Social and emotional suffering also

conformed to gender roles and associations – financial

problems for men, and emotional and social problems

for women were mentioned. The findings indicate a

substantial gender-specific hidden burden of social and

psychological suffering, which is a feature of TB, as

it is with other chronic stigmatized conditions, that

may often be ignored in clinical consultations (WHO

2001b).

Complementing our assessment of illness experience, the

meaning and PC of the disease also identified gender-

specific findings consistent with other studies. Women

respondents attributed the disease depicted in the female

vignette to psychological problems, but none of the male

respondents reported psychological causes for either of the

vignettes.

Men more frequently attributed TB to sexual experien-

ces and socially unacceptable behaviour, particularly for

the female vignette. This association between TB and

sexual behaviour has been identified in other studies and in

other settings. Nichter (1994) reported excessive and

inappropriate sex as a perceived cause of TB in the

Philippines; Uplekar and Rangan (1996) found that soci-

ally unacceptable behaviour, like sex with prostitutes and

menstruating women, was associated with the onset of TB

in western India. Such ideas provide a basis for community

ideas for stigmatizing women, justifying a man’s right to

desert his wife and remarry because according to this view,

she is not merely a passive victim but also blameworthy.

The cross-gender mistrust of sexual promiscuity, although

directed more by men against women, was also directed by

women against men, providing a rationale for women to

chastise the sexual promiscuity of their men, for when it is

identified as a cause. Such findings indicate the moral basis

of risk and vulnerability to the disease, which justifies and

supports community responses to TB, both support and

stigmatization.

Some PC persist as a tacit undercurrent in the meaning of

TB, acknowledged only after probing. Heredity reflects a

particular aspect of contagiousness and contamination, not

just from person to person, as indicated by reports of

spread by contact, but also across generations from parent

to child. Such concerns naturally affect marriage prospects,

and they are especially troubling in a culture where families

are responsible for arranging their children’s marriage.

Typically we expect this worry about prospects for

arranging a marriage to be more of a concern for women.

Although qualitative accounts reflected this, we did not

observe more frequent reports of it in the female vignette,

as expected.

Concerning the dissemination of information about TB

in the community, and especially with reference to public

health priorities for early HS, findings showed that men

were better served by formal media. More limited access

to public health educational communications about TB

may contribute to women’s shame and self-blame in poor

settings, and also to patient delays in HS. More women

had fewer definite ideas about the cause of TB for men,

and they more frequently referred to karma, which

typically is used as a cultural metaphor for fate, literally,

the effect of deeds in a previous life, when other causes

cannot be specified. Such findings suggest the need for

innovative approaches to disseminate public health infor-

mation about TB to women, perhaps using women’s

groups or activities of the primary health care system

more effectively.

With regard to advice about HS, male respondents more

frequently than women recommended higher levels of

health care services. Both the financial dependence of

women on male decision-makers in the household for

access to outside health care, and lack of information

about the need for treatment in response to symptoms of

TB may have contributed to lower rates of women

recommending appropriate levels of health seeking for

symptoms of recognized TB. A less optimistic response of

women concerning the effectiveness of treatment and

prospects for cure may also reflect limited access to

education and broader gender-based disadvantage, inclu-

ding limited expectations of social supports for women,

and perhaps personal experience in the community

suggesting poorer outcomes for women who present late

for treatment.

Studies suggest, however, that in the face of limited

access, women who do eventually come for treatment may

have better rates of treatment adherence and outcome

(Johansson et al. 1999). Smith (1994) explains that such

findings may reflect the persistence of those particular

women who manage to overcome the barriers of limited

access to health care. Insofar as our findings indicate

Tropical Medicine and International Health volume 9 no 11 pp 1228–1238 november 2004

S. R. Atre et al. Culture, gender, and TB in India

1236 ª 2004 Blackwell Publishing Ltd

greater socio-economic barriers faced by women and the

greater social and emotional burden of TB borne by them,

they are consistent with Smith’s argument. The more

specific questions about gender differences in rates of TB,

access to treatment, diagnosis, treatment adherence, and

outcome, however, constitute a broader agenda for gender

studies of TB well beyond the scope of this report.

This cultural epidemiological study has demonstrated

gender-specific features of the community-perceived bur-

den of TB affecting men and women and reported by them.

The perceptions of people without TB in the village

communities of our study reflect a mixture of optimism

regarding the availability of treatment for TB and scepti-

cism about the possibility of prevailing over a disease that

not only burdens affected individuals, but also their

families and even the next generation. Although we found

evidence that some respondents rejected the stigma and

social discrimination traditionally associated with TB (e.g.

sending married women back to their natal homes), the

range of community responses also highlights the persisting

vulnerability of women and the hidden emotional and

social burden of TB.

Our findings indicate views of the general population

suggesting limited community support for women with TB,

their limited access to treatment, and more limited access

to information about TB from informed sources. These are

crucial considerations for TB control, and our findings

should also be complemented with studies of people with

TB and health care providers who treat them in these

communities. Efforts to enhance the gender sensitivity of

health services and to promote community awareness of

TB will nevertheless benefit from attention to the findings

presented here.

Acknowledgements

Financial support of the Swiss Agency for Development

and Cooperation is gratefully acknowledged. We also

thank the following persons for their assistance and

contributions to the research: Dr N.H. Antia, Director,

FRCH, for encouragement throughout; Ms Deepali

Deshmukh, Dr Nishi Suryawanshi and Mr Omprakash

Patil for inputs in the design and initial field research

activities; Dr N.F. Mistry for support in developing the

manuscript; Prof. R.K. Mutatkar, Honorary Professor,

Health Sciences, University of Pune and Dr M.W.

Uplekar, Medical Officer, WHO Stop TB Programme,

for inputs in developing the study and consultation

throughout; and Dr A.K. Chakraborty, Epidemiology

Analyst, Bangalore, and other members of the research

advisory committee organized by FRCH for their review

and consultation. We appreciate the cooperation of the

State and District TB Officers and Health staff, Patients

and Community respondents.

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Authors

Sachin R. Atre, Abhay M. Kudale, Sudhakar N. Morankar and Sheela G. Rangan, The Foundation for Research in Community Health,

85, 3 & 4 Trimiti B, Anand Park, Aundh, Pune 411007, India. Tel.: +91 020 25887020; Fax: +91 20 25881308;

E-mail: frchpune@giaspn01.vsnl.net.in

Mitchell G. Weiss, Swiss Tropical Institute, Department of Public Health and Epidemiology, Socinstrasse 57, CH-4002 Basel,

Switzerland. Tel.: +41 61 284 8284; Fax: +41 62 271 7951; E-mail: mitchell-g.weiss@unibas.ch (corresponding author)

Appendix 1

Structure of the EMIC Interview for respondents without

TB in the general population of rural Pune District.

1. Socio-cultural characteristics

• Demographic data, including age, sex, occupation,

education, religion, and marital status.

• Socio-economic information about household, including

livelihood activities and income. Open-ended questions

(yielding ‘spontaneous’ responses) and focused queries

(yielding ‘probed’ responses) about particular categories,

and narrative accounts with reference to the condition

depicted in a vignette inquire about the following topics.

2. Identification of condition and help seeking

• Recommendations for help seeking

• Anticipated treatment from various types of providers

• Anticipated outcome with and without treatment

3. Patterns of distress

• Somatic symptoms

• Illness-related family issues and social problems

• Financial problems

• Psychological problems

• Most troubling among the above

• Indicators of stigma

4. Perceived causes

• Ingestion

• Health-illness-injury

• Heredity

• Environmental

• Traditional-cultural

• Sexual

• Karma-supernatural

• Most important among the above

5. Sources of information about TB

Appendix 2

Vignettes depicting TB, which served as reference for

queries of the EMIC interview.

Male vignette

A male ‘Raghu’ is 23 years old. He has been suffering from

cough and fever since 2 months. He keeps bringing out

sputum while coughing. He does not have any appetite and

has lost a lot of weight. He feels so weak that he is not able

to continue any more with his daily work on farms.

Female vignette

A female ‘Manju’ is 18 years old. She has been suffering

from cough and fever since 2 months. She keeps bringing

out sputum while coughing. She does not have any appetite

and has lost a lot of weight. She feels so weak that she is

not able to continue any more with her daily work at

home.

Tropical Medicine and International Health volume 9 no 11 pp 1228–1238 november 2004

S. R. Atre et al. Culture, gender, and TB in India

1238 ª 2004 Blackwell Publishing Ltd