Background
Aim
Methods
Design
Setting, participants, and data collection
Number of participants in each FGD and interview
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Numbers of FGDs and interviews
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Length of stay in Sweden
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Country of origin
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Swedish speaking
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---|---|---|---|---|---|
Men >30 years of age
| 7 | 4 repeated FGDs | 2–25 years | Ethiopia and Eritrea | Yes |
Women >30 years of age
| 4 | 4 repeated FGDs | 20–22 years | Ethiopia and Eritrea | Fluent |
Women <30 years of age
| 3 + 1 | 2 repeated FGDs | Second generation | Eritrea and Somalia | Fluent |
Men, aged 27–32 years
| 6 | 2 repeated FGDs | 2–3 years | Eritrea | Yes and No |
Women, aged 31–33 years
| 5 | 2 repeated FGDs | 2–3 years | Eritrea | Yes and No |
Key informants, aged 30–59 years
| 1-2 | 7 interviews, 2 were repeated with the same individuals | NA | Ethiopia and Eritrea | Yes and No |
Analysis
Ethical considerations
Results
Core category—Fogging the issue of HIV
—Your fame is more important than your health…rather than getting [a] bad name you suffer from the disease. (Male KII)
The context of fogging the issue of HIV
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Vulnerability of immigrants
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Structure of the reception of asylum seekers
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Structure of the Swedish healthcare system
Vulnerability of immigrants
Structure of the reception of asylum seekers
Structure of the Swedish healthcare system
Causes of the fogging of HIV
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Depending on the exile group
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Distrusting the Swedish healthcare system
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Misunderstanding rights and obligations,
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Fearing the consequences of being HIV positive
Depending on the exile group
—If you don’t adjust to a particular climate, you will freeze to death, and if you don’t adjust to a particular group, you will end up isolated. (Female FGD)
—You do not want to have contact with somebody who has HIV, to be with or to marry or anything. (Female KII)
—I can’t imagine that any guy I know would dare to go to a shop and buy condoms. Somewhere around there would be an aunt watching and then she would go directly to the mum. (Female FGD)People who lost weight due to other reasons than HIV infection were sometimes assumed to be HIV positive and were excluded from the exile group. Thus, even symptoms that were not associated with HIV had to be hidden so as not to be connected with HIV. Even testing for HIV in itself or showing a negative test could arouse suspicions of HIV. The influence of the exile group varied among early arrivers, the second generation, and new arrivers.
—You trust your own people…you know each other. (Female FGD)
—A positive person can only marry another positive person… In Eritrea by law you have to have a test before marrying…no priest or imam will marry a discordant couple. (Female FGD)For others, the exile group came to represent stagnation and pressure to adapt. The need to belong to the exile group was said to decrease over time after people started to feel more at home in Sweden. This was particularly true in the second-generation group who experienced the exile group as a safe extended family but at the same time one with strong social control. Thus fogging of HIV was influenced by these contradictory feelings toward the exile group.
—You feel alone, too. (Female FGD)
—Even when I was in Eritrea, HIV was like a “normal” disease, like cancer or… (Female KII)
—Instantly when he takes his medicine he can go on living like anybody else to me. (Male FGD)
Distrusting the Swedish healthcare system
—I can tell you I don’t trust them. Sometimes I think about these medicines they give me. Is it because it gives them a chance to perform research on me? Or is it real medicine? (Male KII)
—They don’t tell you that you have HIV [in Eritrea]. But I don’t know [how it is] here in Sweden, really. (Female KII)
—In my country, you go there [to the doctor] and then you get treatment. (Male FGD)
—They tell you that you have to call…it doesn’t work… sometimes the phone does not work, sometimes you run out of time…I can’t find my doctor, its busy all the time. (Male FGD)
—One doctor says something but the interpreter translates in another way, then you start to wonder, “What [disease] have I actually got that the doctor did not say?” (Male KII)
—If it spreads that they [interpreters] leak [information], then of course people do not dare to contact the healthcare system. (Male KII)
Misunderstanding of rights and obligations
—OK. Confidentiality. Then no one needs to know and I will go on living like before. (Female FGD)
—When I am diagnosed as HIV positive, it stays between [the doctor] and me… that is wrong. (Female FGD)
—They think they have to…they believe that if they don’t do this examination they will not get the permit [to stay in Sweden] or something. (Male KII)
—That is the thing, it should be mandatory [to test for HIV]…I don’t think anybody should have the right to refuse….and testing should be done before you have had time to discuss it with others. (Female FGD)
—You have to have the right to say, “I do not want it”. Nobody asked me or the persons who were there [for the health examination] if we agreed to an HIV test. They should have informed before [they performed the test]. (Female KII)
—It was good. It concerns our health and that means it is good. (Male FGD)
Fearing the consequences of HIV
—At first it became totally dark, like in the night. It was a terrible time…I turned day into night. I could not sleep. (Male KII)
—An HIV-positive woman finds no man [to marry]. (Female KII)
—If you look at a family where the parents are HIV positive but their children are negative. Nobody wants to be with her or him [the child]. It is awful…for the child it is terrible. (Male KII)
—If you are found to be HIV positive, you will automatically be isolated [from others]. Even if you move from your home country to another country this tradition of isolation is carried along. (Male FGD)
-If you disclose the [positive] result, you know the scenario. (Male KII)
—We in the younger generation talk openly about it. (Male FGD)
Conditions intervening with fogging the issue of HIV
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Influence of previous experiences from the country of origin.
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Sin and shame according to the holy books.
Influence of previous experiences from the country of origin
—In our society, it is a lottery to tell about your health at all…you keep everything to yourself. (Male FGD)
—Our traditions are rigid…you try to avoid involving others. (Male FGD)
—We have seen the stages of HIV, when people died from it, we have seen everything…because these people did not get treatment…it created a fear in me, the picture is still there. And when I visit my friend in the hospital, should I hug her and kiss her? And if she does not want to eat, should I feed her? No, huh [shrugs her body]. (Female FGD)
—I know HIV-positive persons whose families have cut the strings to them. They don’t want to know about them. (Male KII)
—They don’t believe there is any treatment. Therefore, there is no use to know you have a disease that can’t be cured. (Female KII)
—They don’t think that they really have HIV…mostly they don’t know. (Male KII)
—There are still some people who die from ART itself. (Male KII)
—For me to go there and get my medicine. It has been a pain. (Male KII)
—In the beginning, the information given was that “you will live only with medicines” and there were so many medicines…some people said…“Why should I?…when I will die anyway in the end. I abstain.” (Male KII)Information about recent discoveries in HIV research did not always reach people, especially people in remote areas where access to the media is poor. Some experienced that they were misinformed or insufficiently informed about HIV by newspapers and other media in their home country. Others said they avoided any information about HIV because it made them worry.
—This ignorance makes us afraid. Makes us close [the doors]. (Female FGD)
Sin and shame according to holy books
—People think that it [HIV] comes from God or Allah or something, why? Everyone can protect themselves…it says in the Bible you should just have one man or one woman and then live like that. (Male FGD)
—If you…have HIV, maybe others can think that there is something bad about you…the fear is…it is said that those who are HIV positive can blame themselves. (Female KII)
Interacting strategies in fogging the issue of HIV
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Hiding the truth
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Living in denial
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Seeking advice from outside the healthcare system
Hiding the truth
—You can tell only God. If you tell others you know for sure that they will not have any contact with you. (Male KII)
Living in denial
—Yes, watching TV when it is about HIV…ohhh, that is awful…they are full of worries. They don’t want to look. (Female KII)