Characteristics of respondents
The socio-demographic characteristics of the study participants revealed that the highest percentage (73%) of study participants age were 30 years or above. Among the total participant’s 58% was male and 42% female. Most of the participants (83%) were Muslims and the rest of the participants (17%) were Hindus by religion. About one-third of study participants (32%) had higher secondary or above level education, 44% had secondary level education but 15% of the participants had no formal education. Among the study participants, 27% were daily labour, 33% were involved in small business, 23% had businessmen, 17% were farmers.
Social perceptions
A contagious disease
The majority of respondents seemed that TB is a contagious and deadly disease. They perceived that the exposed patient is untouchable and nobody wants to touch him/her not even the family members. Besides, they assumed that TB bacteria spreads in the air and close communication may infect them too. One respondent quoted,
“although it is now curable whereas people still perceive that if someone is infected by TB cannot survive, death will be inevitable, though it is totally different now.”
(IDI- patient, Age-31, Occupation- Service)
A few respondents shared experience that those who are not conscious enough, they unknowingly misbehave with TB patient and never touch or come close to them. One respondent shared a context that,
“Since my childhood, I used to suffer from extreme coughing every winter but I recovered by taking medicine. In 2005, my coughing started as previous, and lost appetite during university admission coaching. The doctor diagnosed and confirmed me as TB positive. My relatives used to come to see me but didn’t sit beside me. A couple of months later my mother identified a tumor on her shoulder and she has also been tested TB positive. For this reason, I am sure that TB is an infectious disease. I think, my disease came from my roommate during the admission test who also had TB which I didn’t know before identifying my one. ”
(IDI- Patient, Age-19, Occupation- student)
Another respondent quoted,
“it’s a contagious disease because after being identified myself as TB positive, my wife didn’t bother it rather she stayed with me, we ate and slept together which resulted in her positive too.”
(IDI- Patient, Age- 48, Occupation- Farmer)
An ancestral Disease
Most of the respondents mentioned that TB is a hereditary disease. They perceived that TB is passed on from one generation to another in their society. A few respondents reported that TB is an ancestral disease. The following quote from one of the respondents exemplifies this concept,
“My father died of TB in 2003 and my uncle also died for the same reason. From 2011, I sometimes coughed and in 2013 it became severe and my mother took me to the doctor. The doctor said, I am having TB, and suggested me getting admitted to Rajshahi Chest Hospital. After taking treatment I am well now.”
(IDI- Patient, Age- 36, Occupation- shopkeeper)
For similar types of perceptions prevailing in the society, most of the respondents perceived that TB is an ancestral disease.
Excessive smoking and addiction
A popular perception about the cause of TB among the respondents is smoking and addiction. This perception became stronger after being tested TB positive- they reported. One respondent quoted,
“I smoked a lot that is why I am suffering from TB.”
(IDI- Patient, Age- 48, Occupation- Farmer)
On the other hand, a few respondents reported that many people who do not habituate to smoking whereas they are suffering from this disease. In this connection, one respondent stated,
“I have been staying in this chest hospital for four-months and 15 days. I had never smoke rather I discouraged my fellow/colleagues to have smoking as it causes TB. Unfortunately, now I am the victim of this disease. Therefore, I think, non-smoker can also be infected by TB, there is no rules that only smoker will suffer from this disease.”
(IDI- Patient, Age- 28, Occupation- carpenter)
In terms of addiction as a cause of TB infection, one third of the total respondents opined that excessive addiction can causes TB. One respondent seemed that as they had severe drug addiction therefore, they are suffering now. He shared a story from his experience,
“I have a small tea stall and my wife also has a small business. Since my wife also has earning source, I did not bother about my family and spent most of my earnings buying different drugs. I used to have 75-80 bidi (known as a cigarette) daily. Besides, I used to have cigarettes, Marijuana, heroin, etc. except injection. Just a couple of days before, I was feeling that no medicine was working properly in my body. Then I noticed that I was having a black stain in my cough, getting thin, losing appetite, and coughing was increasing too. Therefore, I met with a doctor and the doctor diagnosed it as TB and now I am here in this hospital.”
(IDI- patient, Age-55, small businessman)
Controlling hunger
Another important perception among the respondents that food is essential for every creature to survive in the world. They think, every species does not take the same types of foods, the amount of food intake also varies among them. One respondent quoted,
“normally, 1800-2100 kilocalories food requires for a human being in everyday.”
(IDI- patient, Age-23, Occupation- student)
In addition to that, food intake differs depending on the economic condition. A few respondents opined that some people take balanced diet and some can hardly eat that. Based on the region and place, food habits also vary. Only one respondent reported that, situation gets changed totally when someone cannot afford three times meal daily due to economic insolvency which causes malnutrition and different types of sickness. This situation also leads to get infected by TB as stated by some respondents. One respondent quoted,
“I have been staying in this hospital for 2 months. I have suffered a lot that is inexpressible. I used to do extreme work as I am a rickshaw puller. Sometimes I could eat for once in a day and someday I did not have enough money to buy food so pass that day drinking water only. That is the reason of my illness.”
(IDI- patient, Age-55, Occupation- rickshaw puller)
Due to not having sufficient food for the human body immunity falls which causes various diseases that might be happened, said by another respondent.
Late-night work and heavy dust
One-third of the respondents perceived that they are suffering from TB due to his late-night work because it has a bad impact on the body. Indiscipline life causes different health problems which they seemed. They thought that late-night work reduces the required energy. In addition, a few respondents revealed that heavy dust in the workplace caused TB. Regarding this finding, one respondent shared his experience,
“I am working as a carpenter for 15 years in a small factory. Carpentering produces huge dust which enters the lung through breathing in that air that causes asthma then TB. I assumed, by this way I got infected by TB. I was having extreme cough before identifying TB which is a pre-symptom of TB.”
(IDI- patient, Age-35, Occupation- carpenter)
Overburden or excessive labor with long working hours
The majority of the respondents opined that taking overload is one of the key causes of TB infection. They thought, doing work beyond capacity or doing extreme work or hard work is an important reason of TB infection. Usually, people do not want to do excessive work but to achieve the basic need or demand of the family some people have to do this as they reported. One respondent quoted,
“I do not want to take pressure but with my regular income I cannot meet my family needs, therefore I have to do overwork. This is why I got infected by TB.”
(IDI- patient, Age-39, Occupation- Daily wager)
Although he thought that, excessive work could cause health problems, he did not bother as he wanted to make his family happy.
Ignorance about the disease
Most of the respondents reported that they were very much careless about TB as a disease and its infection. According to their report, many of them came to this hospital at the eleventh hour when the local treatment failed. At the beginning of the disease, they tried to take treatment from the village doctor however, they did not follow the instruction properly which led to the increase of the infection level. Then, they came here but were not satisfied with our treatment and accuse us for not recovering soon. A context from a respondent (patient) regarding this perception,
“I have been driving Rickshaw for 7 years. At the beginning of the TB infection, I had huge coughing at night, later on, I lose my appetite but I did not bother. I continued hard- working by ignoring this problem as I thought it was normal, it would automatically get well. Couple of days later, when I realize that my coughing was increasing I went to the doctor, after doing some test I was diagnosed TB positive. Doctor prescribed me to get admitted to the hospital. As my home is close to the hospital, without staying in the hospital, I just followed the prescription of the doctor. I was recovering after taking some medication. Then I started skipping some medicines and started doing my regular job. Like the past, I used to do hard work as my family depends on me. Within 15 days, I became severely sick that my family member admitted me to the hospital. Therefore, I believe to get rid of this disease every patient needs to strictly follow the instruction of the doctors.”
(IDI- patient, Age-36, Occupation- Rickshaw puller)
Social prejudice
Most of the respondents revealed that the supernatural power is related to TB infection to the human. They believed, Allah (almighty) controls this disease, whoever Allah thinks gives this disease due to performing some ill-job or any sin or harm to the others. Social prejudice related findings to TB infection are highlighted below-
Allah has given this disease
Most of the Muslim participants believed that only Allah has the power to cause disease and to cure it. For doing any sin one might have to confront with this disease. One respondent quoted,
“I never get addicted to anything rather I have forced my friends to prohibit substance use. But I am suffering from TB. I think, I have done some bad things unconsciously which caused TB for me. I think as I am suffering from TB despite being careful, it is my fate and, this is the wish of my Allah.”
(IDI- patient, Age-32, Occupation- Business)
Three out of 20 respondents revealed that misdoing in early life is the reason of their suffering from TB. This was happened for the curse of those people who suffered for their misbehaved. Besides, one respondent opined that guilty feelings create self-exclusion and depression. He thought, TB infection is a punishment to him. Another respondent expressed his emotions by following way,
“I have begged pardon to my parents and said, I made you suffer a lot therefore, I am suffering (from TB); please forgive me for my misdoing or misbehave.”
(IDI- patient, Age-42, Occupation- Small business)
A few respondents noticed that committing sins is the key cause of TB infection of them. They considered many bad things what they did in their young life. Perception about TB gets changed and modified by the social notion of good vs evil deeds, they reported. It was revealed that, after getting infected by the TB virus, respondents investigated on their past life that what types of sin they did earlier. In Bangladeshi culture, it is a common teaching that, if someone does any bad work/sin, will suffer from any of the deadliest diseases. They heard that, if someone makes the big loss of others they will be cursed by the victim which might be a reason for this disease. After getting infected by TB disease, one respondent accused himself for his evil deed and states that,
“I used to torture my family, tortured my daughters, drank alcohol, had physical relation with young girls of my community, destroyed the life of many girls by making relation with them forcefully, destroyed cultivable lands etc.”
(IDI- patient, Age-38, Occupation- Factory worker)
One respondent shared his experience that some people hide this disease from others for this guilty feeling and from the fear of being humiliated or identified for any sin/misdoing.
It is a misfortune
Five out of 20 respondents accused that they got TB infection only for their misfortune. They thought, this is for their fate. One respondent quoted,
“Why Allah is taking a test of myself, only Allah knows.”
(IDI- patient, Age-43, Occupation- Rickshaw puller).
Another respondent revealed that he did not understand the source of his TB infection. He thought, as he did not misbehave with others, nor hurt anybody but suffering from this disease as it was written in his fate.
Result of the curse by others
A few respondents reported that they thought TB disease is a curse of others for doing some unethical work and behavior. In this connection, some TB patients believed in the curse. One TB patient said that he repented for his previous wrong deed. He also quoted,
“I killed many people whilst driving. I got married 3 times.”
(IDI- patient, Age-39, Occupation- Truck driver)
Another respondent opined that he thought this disease is the result of wrongdoing such as- disrespecting older person and misbehaving with them may result in their curse and in turns cause TB. In this regard, he quoted,
“I have misbehaved with many people in my childhood and their curse has caused TB infection.”
(IDI- patient, Age-36, Occupation- Rickshaw puller)
The process of social stigmatization
No one wants to touch
Most of the respondents revealed that people are afraid of getting infected by tuberculosis in their society badly. That is why people do not want to touch the infected people and hate the TB patient which made them isolated. They also said that one of the reasons of this abhorrence is ungraceful health condition of TB infected people. In this regard, one person stated,
“actually people do not want to be close to the TB patient as it is contagious disease. As it is infectious disease people fear of happening anything at any time. People behave in that way to protect themselves and made them isolated” (IDI- attendant of the patient, Age-36, Occupation- Farmer). Another respondent shared his experience like-, “my parents and my kin brothers do not touch me. They do not want to sit beside me even if they sit keep safe distance. They actually hate me. They said it is a worst disease. It transmits from one body to another body therefore, they isolated me.”
(IDI- patient, Age-36, Occupation- shop keeper)
No one wants to take care
Most of the respondents who were infected by TB said that they do not find anyone to look after themselves during this period. They thought, they were living in a no man’s land in their society as because people are afraid of this disease. Regarding this one respondent quoted,
“no one is found to take care of the TB patient that’s why I got admitted in the hospital.”
(IDI- patient, Age-24, Occupation- Student)
A few respondents revealed that just after the husband’s infection, wife also get infected. Therefore, patients also want to stay alone so that no one faces the same problem. In this regard, one respondent shared an experience,
“I am a farmer. I live in Bogura (a district of Bangladesh). I work in other’s land as well as in my land to support my family. I have five members in my family of which me and my wife is infected by TB. I took treatment for five months from a village doctor. My wife was diagnosed with TB two months ago. Therefore, everyone fears to be close to me. I have no one to look after due to my disease. For this reason, they (family) left me and I am living alone in this hospital.”
(IDI- patient, Age-34, Occupation- farmer).
Most of the respondents believed that people are their own but disease is not. It is true because no one wants to be close to the TB patient, even family members. One respondent said, people are our own but not any disease.
Family, friends, and kinsman alienates
Most of the respondents said that after-all family members and friends are the most important persons for an individual to whom s/he spends most of the time and took mental or physical support during danger period. Unfortunately, as per TB patient’s statement, after being diagnosed as TB patient, family members and friends do not want to keep communication physically or verbally with TB infected patient. In this connection, one respondent said,
“when I was tested TB positive my close friends stop communicating and started avoiding me. Even, after recovering, when I had normal coughing they used to sneer at me. They told me, have you got infected again?”
(IDI- patient, Age-36, Occupation- business)
As per the statement and experience of a respondent, TB is a such kind of disease that makes people alien from the closest. Communication among family and friends could not be continued. A few respondents said that kinsman was not continuing to communicate with TB patient too.