Results
We interviewed:
• 21 TB patients: 5 young male, 7 young female, 6 older male, 3 older female. A range of castes was included.
• 5 family members of TB patients.
• 8 members of the community who were not current TB patients or family members of TB patients.
Interviews took on average about 2 hours, and many interviewees were subsequently re-interviewed to clarify issues. No-one identified as a potential interviewee refused to be interviewed, although several interviewees asked that the interview take place in a discrete location to avoid being seen by anyone known to the interviewee.
Existence and causes of self-stigma and -discrimination
It was clear that patients' beliefs were a major cause of self-discrimination. TB patients generally isolated themselves from family and friends, and particularly from children, because of a fear of transmitting the disease.
"I was afraid of TB because I could transmit that to my son, daughter and children. I am old now, and it will not make that much problem if I die but if my son, daughter and children die then it will be a problem. I thought in such a way and was afraid of this disease."
(53 year old female patient, unemployed, code 17.)
This behaviour continued throughout treatment, even among patients who were clearly advised that they posed no risk to their family.
"My husband knows that I am suffering from TB. He had taken me for check-up. He told me that whatever the doctor said, I was suffering from TB and should not give jutho [eat food from the same plate] to children because it is danger and communicable disease. We also should not sleep together in a single bed."
(32 year old female patient, vegetable seller, code 21.)
TB patients isolated themselves from friends and family, not only because of a fear of infecting others, but because of fear of discrimination.
"I felt odd to sit together with friends. Friends said nothing but I myself felt so while taking foods etc. Though I had idea that it is a curable disease, I felt whether I would live no longer or it would happen for ever, for whole life time. ...If my friends open my bag and there is my treatment card, I become afraid, thinking what they could have thought, and feeling fear of whether they change their behaviour towards me, like not sitting with me, not taking food together, and not talking in a good way."
(18 year old female patient, university student, code 05.)
If someone special is there to whom I must say then I say that I am suffering from TB, otherwise why say to everyone? If they know they may say he is sick and suffering from TB. Other people may hate saying that I am suffering from TB.
(41 year old male patient, tailor, code 14.)
"Nobody in my family knows about my disease. My wife also does not know about my disease. I am taking drugs regularly and I have not told her. I think they may be stressed [by the knowledge]. ... If I say in my home it will only create tension in other family members. ... If my wife knows that I am sick then I think she would be tense and feel heavy mental burden because I am the sole bread earner for my family."
(37 year old male patient, code 20.)
This was not always the case, however:
"There are two types of people: one who suffers from this disease and knows that it will be cured after taking drugs; and another, who afraid of thinking that others may know about their sufferings. I don't know why they think so and become so afraid. But so far as I think, one should not think in such a way."
(18 year old female patient, school student, code 06.)
Fear of gossip was a recurrent explanation for hiding TB from friends and neighbours:
"Thinking that neighbours might hate [him] I had not told them about his disease. ... We went to the village after his diagnosis, but I didn't say that he is suffering from such disease because it was village and once they know they start back-biting and may hate us."
(Mother of young male TB patient, housewife, code 16a.)
"None of my friends know that I am suffering from TB. I didn't let them know. I don't have faith in friends so I don't say with friends. They do back-biting and if they get a small issue they make it larger and so I didn't share this suffering with them."
(Young female patient, code 22.)
These concerns about discrimination by others may come from historical hangovers from the days when TB was much more difficult to cure, coupled with limited understanding in village communities that things have changed:
"This stigma in TB is already been socialised in our society since a long time."
(34 year old male patient, university lecturer, code 03.)
"Although they usually hate TB sufferers, they have said nothing to me."
(16 year old female patient, school student, code 10.)
"Nowadays it is not like that of older times; community [ie village] people now take it [TB] as a normal thing."
(53 year old female patient, unemployed, code 17.)
Concerns about the incurability of TB continue, even though there is widespread first-hand experience of friends or neighbours being fully cured following a diagnosis of TB. This was the case more often than not with our respondents:
"One lady of my age had also suffered from TB in my neighbourhood and other friends were also suffering from it. So, I had already heard about this disease before I suffered."
(19 year old female patient, factory worker, code 11.)
"My cousin had also suffered from TB. So I thought of it as a normal disease."
(Male patient, school student, code 16.)
Unmarried TB patients do not report being overly worried about the impact of TB on their marriage prospects. One respondent reported:
"My husband, his mother and uncle knew about my disease before marriage. When they came to propose ... we had said that I was suffering from TB and taking drugs and they said it can be treated. ... We had arranged marriage. I had seen him only once before marriage."
(19 year old female patient, factory worker, code 11.)
On the same topic, another respondent stated his belief that
"I don't think any girl will refuse to marry me just because of my suffering from TB."
(25 year old male patient, cook, code 15.)
However, in Nepal issues of marriage are highly confounded with gender issues. One respondent commented
"Even if you are not TB patient they treat you differently [ie badly] because you are girl."
(18 year old female patient, student, code 19.)
Existence and causes of stigma and discrimination by family and friends
We found little evidence of discrimination within the family:
"Other family members also know that she is suffering from TB and said nothing. Everyone in her maternal home and relatives know but nobody hates her. They just suggested that it will be cured: she needs to eat in a good way and not neglect herself. Neighbours also know and do not hate. They also frequently visit and sit together. We are only four in the family and neighbours help in bringing food and in other things. Friends also helped a lot. They bought drugs at night time also."
(Mother of young female TB patient, manufacturer of temple gods, code 13.)
There was also little evidence that in reality friends would discriminate against a TB patient. On the contrary, respondents reported their friends provided encouragement and support.
"There are three to four friends [who I work with]. They know about my suffering. They said 'I know you are suffering from such disease – tell us. We can also bring drugs for you.' They say 'Don't hide your disease, tell us. We will help you as much as possible."'
(43 year old male patient, labourer, code 08.)
"Everyone in my birth-home knows about my disease. Everyone knows about my suffering and so I am taking drugs. They didn't feel anything wrong. All of them love and don't hate me – rather they take care more."
(19 year old female patient, factory worker, code 11.)
When it was suggested that friends might change their attitude to a person after discovering he had TB, the response was
"I have said to every close friend ... that I am suffering from TB. They also suggested I should not worry: 'It will be cured by taking drugs'. There is no such change in behaviour of my friends."
(Unemployed male patient, code 09.)
Likewise we found little evidence of discrimination by neighbours:
"Neighbours nearby my home and members of my [workplace] know about my suffering. They act normally. Their behaviour is not changed by merely knowing that I am suffering from such disease."
(18 year old female patient, university student, code 05.)
"House owner and people in nearby rooms and area also know about my disease. They say nothing. Some of the women had also suffered from TB and got cured. I sit and eat together with my neighbours but I have felt nothing uneasy of any difficulty."
(19 year old female patient, factory worker, code 11.)
Existence and causes of institutional stigma and discrimination
Some patients felt they were discriminated against by health workers.
"... one nurse, who seemed quite mature, looked like very much fearing that it [TB] could be transmitted to her. She suggested to me to put on the mask every time and not to put it off even for a fraction of time as if she was alarmed and saying to me 'be careful."'
(18 year old female patient, code 06.)
"I'll tell you what happened to me when I was suspected of TB. ... [At his first visit to a hospital while seeking diagnosis] I mentioned that I saw blood in my sputum last week and came here for treatment. Suddenly and surprisingly she asked me to stand far from the window and she covered her mouth, her behaviour was changed. I got surprised and worried I may have got a dangerous disease. I felt so scared and [went] to the room [ie home] without any check up. ...Now I do not want to remember that time."
(29 year old community member, code 26.)
Others reported more positive experiences, and were happy with the way staff behaved towards them. We have not yet carried out studies to identify the causes of this discrimination by health workers. Anecdotally and from observation of health workers' behaviour towards patients, it is clear that some health workers are concerned about the risk of becoming infected with TB, but further research is needed.
Respondents who were students, either at school or university, reported they had not experienced and did not fear discrimination from teachers. However, students tended not to tell their teachers.
"Teachers do not know that I am suffering from such disease. Even if they did know, nothing would have happened."
(16 year old female patient, school student, code 10.)
"Teachers might not know about my disease. They don't ask and so I haven't said. Only three to four of them know it. ... [a specific] teacher is friendly and asked me and I said I am suffering from TB."
(Male patient (age unspecified), school student, code 16.)
Existence and causes of stigma and discrimination in the community
Most community members interviewed commented that people with TB are easily identifiable because of physical weakness, thinness and cough: one gave a list of physical signs, and also remarked that
"these people usually do not like to talk and come around other people unless [there is a] specific reason."
(59 year old male community member, retired, code C01.)
Although patients and family members expressed their confidence that community members did not discriminate against them, one community member interviewed stated that in fact she did discriminate.
"As the disease can transmit to other people, there is risk of getting disease in the community. So, we need to take care of ourselves. How? – we should not meet with the people who have TB; we should not visit the homes of those who do have any of the members got TB."
(55 year old female community member, office assistant, code C02.)
One respondent made an interesting comparison between TB and typhoid (another communicable disease):
"A patient infected with typhoid, people take care of disease and carry them to hospital for treatment but they do not behave equal with TB patients."
(34 year old male professional, code C07)
TB was associated with what is considered in Nepal to be immoral behaviour (visiting prostitutes, drinking and smoking):
"When a woman got TB she was looked at with the eyes of suspicion whether she would have gone for sex with low profile people [ie she was suspected of being promiscuous]. This kind of feeling is still there in the community even today."
(59 year old male community member, retired, code C01.)
"In the community TB can easily be guessed to those people who do have a habit of drinking alcohol and smoking cigarettes. People seem quite thin and usually not interest for food."
(55 year old female community member, office assistant, code C02.)
"We have seen and heard that TB usually got to those who drinks, who smokes, who [goes to many] prostitutes, who drives trucks, who do not care of food [ie who eat a lot]."
(69 year old retired headmaster, code C04.)
Furthermore, many respondents believed that TB was associated with other 'disreputable' attributes: being poor, and of low caste. One respondent (a 65 year old housewife, code C05) also commented that TB was associated with working most of the time in the fields, and with a lack of adherence to religious rituals.
One respondent (a 34 year old male professional, code C07) believed that TB was not only communicable, but also a hereditary disease.
Several community members commented that women who had TB would be discriminated against.
People do scare to get marry with the lady with TB, even after she got cured because it is believed that the lady who experienced TB in her life would not beget any children. She would never be fertile.
(59 year old male community member, retired, code C01.)
The comment by patient 11 quoted above was contradicted by her husband, who independently said
"If I had known she was suffering from TB I would not have married her. But I knew after marriage only. Now I have accepted it taking it as my fate. I advise her not to be afraid and not to worry about it."
(Unemployed husband of female patient, factory worker, code 11a.)
For reasons of confidentiality we were unable to clarify this situation. Despite probing, the husband did not elaborate why if he had known his wife-to-be was suffering from TB he would not have married her.
The patient clarified that
"He might have said that he had no idea beforehand, might be because of odd feeling in saying so in front of you."
(19 year old female patient, factory worker, code 11.)
One respondent stated
"... if a girl gets TB, community people will be reluctant to arrange marriage with her, because TB is also perceived in community that it is a divine curse to the person and family, comes from wrong things they did in the past. This belief is so strong in the community ...".
(34 year old male professional, code C07)
Other concerns
Several patients reported they were relieved to find they had TB rather than cancer: they knew that TB was curable, whereas they believed cancer was not – probably rightly for poor people in Nepal.
"I worried much that it might be cancer."
(Mother of young female TB patient, manufacturer of temple gods, code 13.)
"We had suspected it as a cancer.... If it was cancer then what could we poor people do?"
(Mother of young male TB patient, housewife, code 16a.)
"When it was diagnosed first, I was suspecting it as a cancer."
(37 year old male patient, code 20.)