All participants knew that TB is a pulmonary disease that can be contagious. The participants cited laboratory blood analysis as the most appropriate method to establish if someone is contagious.
"There are contagious and non-contagious forms of TB. Some blood analysis could be performed and it tells you all. Blood analysis shows whether it is contagious or not. If it is contagious, everyone living with you must give the blood for analysis, so it can be seen if they are infected."
Participants (especially those having someone close with TB) had heard of the term cavity and knew that patients with cavity are contagious.
Knowledge of modes of transmission
Saliva and mouth-to-mouth contact were the most frequently mentioned modes of transmission.
"TB could be obtained if you drink from the glass or if you eat from the plate used by a TB patient. If we drink or eat after the patient some saliva stays on the spoon, the saliva contains TB bacteria and is transferred to our body so we get infected."
Participants thought that TB could be transmitted in the blood and among family members with the same blood type. Some of them even thought that TB could be hereditary. For example:
"If my mother has TB, I am more likely to get the disease than my wife. My mother and I have the same blood type."
"There was a man with TB. After a while his sister got TB as well. Maybe they got it from each other because they have the same blood type. As I heard it could be obtained through blood, it is hereditary."
Opinions about whether TB could be transmitted through hand shaking varied, some participants thought that it was a possible mode of transmission but others did not. Those who thought that it is not transmitted by hand shaking mentioned that they had shaked hands with a person with TB and still avoided getting TB themselves.
"I am not informed that TB could be transmitted through handshake. Even AIDS could not be transmitted that way. If I didn't get it from my sister it could not be transmitted that way."
Those who thought that shaking hands was a possible mode of transmission explained their views in the following way.
"It is possible to get TB through hand shakes. If I cough out bacteria in my hand, because I put my hand on the mouth when I cough, TB bacteria stay on my hand, and if I hand shake with you, bacteria pass on your hand, you touch your mouth and that's how it is transmitted."
During the session some participants mentioned rats as possible vectors for TB transmission.
"There are a lot of rats, big as cats, they bite. It is possible that rats transmit TB, they put there noses everywhere, in garbage and then pass over our dishes because we do not have closets in which to hide them."
Factors contributing to TB occurrence
Participants mentioned poor living conditions, low quality and lack of food, and stress as factors contributing to TB.
"We are 12 in the house and I have only 20,000 dinars per month, about 250 euros. It is not nearly enough for 12 persons so we must eat something that I take from the garbage container. It is the source of all infections."
"TB is acquired from bad food, nervousness and worries. Yes it is; when you worry too much then disease appears."
The participants thought that, if untreated, the common cold and pneumonia could lead to TB. Furthermore, the participants thought that, if untreated, TB could develop into lung cancer.
Knowledge about symptoms
Participants quoted: chest pain, cough, haemoptysis, loss of appetite, loss of weight, weakness and sweating as symptoms of TB.
"First symptoms are chest pain, not ordinary pain, more like stubbing. Also, you feel loss of appetite, you need more sleep, then you feel loss of strength and loss of weight. If one recognizes in time it is possible to recover."
"When you cough black content is expectorated from the lungs, like coal; also blood is constantly expelled through coughing."
Participants highlighted that it is hard to distinguish TB from other pulmonary diseases such as viral pneumonia and asthma. They emphasized haemopthysis as indicative of TB.
"It is hard for me to say if someone has TB. If you have chest pain, it could be that you have some virus, flu, asthma or pneumonia, it is not always TB. But you must take care. It is TB if you see someone coughing out blood or has bad pain in the lungs."
Knowledge about treatment
Roma individuals mentioned that, in general, Roma people do not visit a doctor until the symptoms of the disease are so severe that they are unable to work
"We Roma do not go to see a doctor while we can work; only when we lay in bed do we ask for doctor's help". Regarding the effectiveness of treatment, some participants thought that TB is a very serious, lethal disease, whereas others thought that it is an unpleasant and long-lasting disease but that it is now curable owing to medical advances.
"TB is dangerous but curable. You take antibiotics, doctor tells you what to do, and than you can be cured. It is easier nowadays than it was before."
Some believe that although it is possible to treat TB, it is not totally curable. They explained that even after treatment is completed, some kind of scare stay on lungs and the lungs are vulnerable. The treatment is long lasting, and in some cases can last for 10 years.
"TB is a really dangerous disease. It is lethal if not treated. Even when treated, it lasts for a long time. My cousin stayed in hospital for 15 months. He was young, only eighteen. He probably didn't go to doctor in time. He barely survived."
Participants believe that effective treatment should include: resting, taking prescribed treatment, inhaling fresh air and eating "strong" food such as bacon and pork. Participants have very strong beliefs that "strong" food such as bacon, pork, sausages, fats and cream cheese is very good for preventing TB and could be as important as antibiotic treatment.
"Care for TB patient consists of resting, it is necessary take drugs prescribed by doctor. We gave her eggs, honey, bacon and sausages; pork is obligatory. She was sent to the mountains by doctors, where the air is sharp and clean, which is needed for TB treatment."
They also use some folk medicines to treat TB.
"You take lemon, chop it, put in honey and whole egg with egg shell, the acid dilutes the eggshell, you should eat one little spoon every morning. It is the best medicine."
Some participants thought that patients must pay for prescribed medicines themselves, but others were aware that medicines prescribed for TB are free of charge. Those who had a close relative with TB were aware that medicines are free of charge.
"I think that medicines are free of charge. My daughter did not have to pay for them."
Opinions about most appropriate measures for TB prevention
Improvements in hygiene, living conditions, including electricity, sanitation and water are considered as key factors for TB prevention among participants. "I heard that the easiest way to get the disease is through saliva, so at home I have my own glass so does my wife and our children as well. It would be inappropriate to drink from the same glass."
Participants emphasized that they find it hard to protect themselves from TB, as living conditions are poor. They emphasized the importance of appropriate diet and quality food. Such food, which is expensive, is almost unaffordable for the participants and is probably symbolic of a good quality of life.
"You should have strong food for lungs to function."
"Where we live it is hard to protect yourself. We don't have sanitation or electricity, and the water supply contains chemicals from nearby."
Source of information about TB
The main sources of information are relatives and friends and, to a lesser extent, television.
"When I lived with my mother in law, she told me about everything because she has seen it all. Also, I have seen some of it myself. I have children; I had to be informed to know how to treat them."
"We do not have enough time to watch television or to read newspapers, we must work. We mostly know from the experiences of our neighbors."
Participants can recall campaigns about tobacco control and AIDS but do not recall seeing anything about TB in the general media. The participants would appreciate direct interaction with a doctor who could come and talk to them about preventing TB and, if they are infected, provide advice on how they could protect others from TB. Participants expressed a high level of trust in doctors and believe most of what doctors tell them personally. They think that doctors on television could advertise different things. Therefore doctors on television are trusted less than those seen personally.
"I would mostly believe my own doctor, he is treating me. How can I know what they are talking about on TV, it could be only advertising."
"Don't speak about newspapers, some people can't read."
"We know about TB. But it is from experience. I would like a doctor to come and tell us."
Attitudes towards patients with TB
Participants would visit a close relative with TB even if they knew the patient was contagious. Participants emphasize that the Roma people are very close and they often help each other, maybe more than non-Roma populations.
"I would not be afraid to visit my father or sister if they were ill. It is normal to visit them, I wouldn't be afraid for myself, but I would worry for my children."
"We are all Gypsies, we protect each other. We wouldn't leave without helping any of us. We visit one when he is sick. It is a shame if another goes to visit and I don't. You are embarrassed. If someone were sick, even with TB, I would come with bottle of juice. We are always one for another, (for each other) solider."