We identified five themes: 1) Knowledge and beliefs of participants about TB and LTBI, 2) Attitudes of participants towards TB and LTBI, 3) Felt stigma of participants on LTBI treatment, 4) Enacted stigma of persons on LTBI treatment, 5) Anticipated stigma of participants.
Knowledge and beliefs about TB and LTBI
Background knowledge of TB disease
Most participants had basic knowledge of TB. Some participants, often age 30 or older, explained that they gained initial knowledge about TB through campaigns organized by the local governments in the nineties/early 2000s in Eritrea. They described TB as a serious disease called “the Big Cough”, representing its most common symptom: prolonged persistent cough. Furthermore, most participants said TB could be fatal without treatment.
TB transmission and prevention
Despite the education provided in the TB-ENDPoint project, misconceptions about TB transmission and prevention persisted. Both appeared to be embedded in old cultural beliefs about disease transmission and prevention, perceived to be true for diseases in general. Participants described non-relevant TB transmission routes: sharing drinking cups, sharing cigarettes, eating together, cutting with sharp materials and hereditary (parent to child transmission) contaminated water, cold weather, lack of personal hygiene, and mosquito bites. Furthermore, they described the following corresponding prevention measures: use of own drinking cup and eating utensils, get a separate sleeping place, and ventilation of the house (the latter two relevant for contagious TB).
Understanding LTBI
Participants shared that they had no knowledge on LTBI prior to the TB-ENDPoint education session. Following the education, most participants described LTBI as a condition without symptoms, in which the sleeping, or hidden, bacteria can cause TB disease later in life. However, some described LTBI as an early stage of TB disease, which was characterized by the absence of symptoms. A few participants described LTBI as “closed” and TB as “open” disease.
LTBI and TB versus HIV and AIDS
To differentiate LTBI from TB, many participants compared it to the difference between HIV and AIDS: a person with LTBI or HIV is infected with the bacteria, whereas a person with TB or AIDS is sick. Additionally, some other participants compared the symptoms of TB to those of HIV/AIDS: in both situations the patient would lose weight and would become very weak. Also, when asked to explain the appearance of stigma in the Eritrean society, participants used examples about HIV/AIDS.
Participant after LTBI screening: “Yes there is of course some fear of isolation. For example, if I have HIV, I would be isolated from the society. There could be people who would try to support you but there are also people who don’t want to come close to you. (…) When one wise person tells you, the disease is nothing serious and you can get treated, then you will get some hope. You can focus on the fight for your health. Otherwise, if I am sick with AIDS and if you and other people isolate me then it means I have no support. In that case you can even get ready to end your life. If I have a disease, I don't want others to know that I am sick, because they are going to isolate me. (…) This is also common for TB disease” [Group interview (GI) 21]
Attitudes towards TB and LTBI
Almost all participants said stigma against TB patients occurs within the Eritrean community. Some said that isolating a TB patient would be wrong and they should rather provide support. Most, however, would likely avoid a person with TB disease because of fear of getting infected. Some explained that isolation was not to intentionally hurt or stigmatize the person, but rather to take care and protect oneself.
Participant after LTBI screening: “In Eritrea if you hear stories that someone has TB, you would be scared to meet him.” [GI 24]
Participants linked isolation in different ways to knowledge about TB and LTBI. Some said that isolation emerged because of insufficient knowledge about TB and LTBI, and that the projects’ education prior to the LTBI screening had led to understanding and support from community members. On the other hand, few participants said that health education created more awareness and consciousness about severity of TB disease among people who previously had limited knowledge and were more indifferent. This in combination with persistent misconceptions about TB transmission, could lead to other attitudes.
Participant on LTBI treatment: “A friend of mine in Eritrea had TB, and I used to go with him everywhere. (…) We were together most of the time, he would cough around me, but I never cared much. Maybe because I didn’t know much about the disease. (…) I mean, I did not know how someone can get the disease. Now [after receiving education in the Netherlands] I understand much better.” [Individual interview (II) 29]
Felt stigma of persons on LTBI treatment
None of the participants on LTBI treatment described feelings of shame or guilt regarding their LTBI diagnosis. Some persons experienced felt stigma after receiving a letter stating they had a positive test result. They described feelings of shock and disbelief when they found out they tested positive for LTBI. However, the felt stigma was taken away by the extensive explanation about LTBI and treatment possibilities by the TB physician. Participants felt calm and said they were happy “it was only the TB bacteria and not TB disease”. Some participants wondered where they could have been infected with TB.
Participant on LTBI treatment: “I remember something in the military. There was a friend, he was a good barber. He was very thin, and he would keep coughing on top of my head while he was cutting my hair. (…) I always think of TB if people cough around me, no other disease scares me than TB. (…) So, for me, I think it was that friend who transmitted it to me. I am happy that it is not TB disease. (…) Some people decided to stop going to him because they were scared...” [II 24]
Enacted stigma of persons on LTBI treatment
Participants who intentionally or unintentionally disclosed their LTBI treatment to relatives and friends received different reactions. Some said they received good support because their friends also participated in the TB ENDPoint education session, which contributed to treatment adherence and completion. Some participants received demotivating reactions: a few community-members told stories about poisonous medication given in the Netherlands. Some participants with LTBI experienced isolation and stigmatization. For example, one participant on LTBI treatment experienced gossip by other Eritreans in the asylum seeker centre.
Participant on LTBI treatment: “There is two of us taking the treatment and all the people have been whispering and talking about us. They isolate you. I don't tell them the details of what I am doing, but they know that I have the infection. (…) They make you feel as if you bought the disease from the market. It feels as if you have HIV.” [II 31]
Other participants on TB and LTBI treatment, living in a communal house, experienced similar stigmatization. They explained that, despite the education about TB and LTBI their roommates avoided socializing with them, covered their mouth and nose when interacting, and stressed them to use separate drinking cups and a different toilet. The participants felt hurt, and some isolated themselves. Some participants had addressed the issue with the TB nurse (Ethiopian origin), who organized an additional education session at the communal house they were living in. However, cultural beliefs and fear for disease transmission persisted over new information from TB professionals and the stigmatization continued. Some wished they never were screened. Despite their experience with stigma, participants showed strength and commitment to complete their treatment.
Participant on LTBI treatment: “When the TB nurse came to give us the education, she told us all that our case cannot be transmitted. But they wouldn't believe that, they still think that it can be transmitted.” [II 22]
Participant on TB treatment: ‘Before, we used to share [spoons], and I would give her a bite she would do the same. We were like sisters but that time she said: ''I will not use your spoon because you have TB''. I felt really bad. (…) The TB nurse told me that I cannot infect other people, even if I tell that they [roommates] don’t believe it. They would say: ''What else do you think they would tell you, maybe they don't want you to be stressed''.’ [II23]
Participant on LTBI treatment: “Despite their reaction, I wouldn't want to stop my treatment. It might affect my feelings when they say things in front of me for the moment, but I don't think of stopping my treatment. I am hoping to move to my own house, just to be away from their presence. But for now, until I finish my medicine, I just have to sit in my room.” [II 22]
Anticipated stigma
In most interviews, participants said that they would not mind talking about being screened for LTBI. However, out of fear for gossiping and isolation by the community, one would rather conceal a positive test result (see quote GI 21 above). Indeed, some participants on LTBI treatment explained that because of this fear they concealed their LTBI treatment as it would be too difficult to explain the difference between the treatment for infection and disease to others, fearing gossip and isolation.
Participant on LTBI treatment: “Most of the time people ask you why you are taking the medicine and I cannot say it is for TB because they wouldn't understand the difference. There are also some people if you tell them that you are taking medicine for TB, they wouldn't want to come close to you.” [II 19]
Some participants said it was nearly impossible to hide their treatment from friends. For example, during social events they had to explain to friends that they could not drink alcoholic beverages because it was not allowed in combination with the medication.
Participant on LTBI treatment: “When some friends offer you a drink and you would say no, they keep asking why and sometimes they get shocked if you tell them that you are taking medicine for TB. Then you would try to explain to them, but they wouldn't understand it. So, it is always difficult to explain to people. When you try to explain what happened, some would say: "Oh you are becoming like a mouse for an experiment of some medicine''.” [II 18]
Most participants wished for a change in the Eritrean community. They wished people would start to focus on one’s own health, rather than what others say. Some participants used the following expression: “One who hides his wounds, hides his remedy”, indicating that not going for TB testing because of fear of gossip and isolation could only harm oneself as one will not find out about being infected with TB and therefore will not receive treatment.
Participant: “I think you should just think about yourself, for example, if I come to do the test and worry about what others may say about me, then it is hiding your own wound.” (…) [GI 23]