The paradigm model was used as a framework to sort categories and sub-categories and to identify their interrelation (see Figure 1). Emerging categories and concepts were sorted according to the labels of the paradigm model: context, causes, consequences, intervening conditions, and interactions.
Core category—Fogging the issue of HIV
“Fogging the issue of HIV” implies that denial and fear of knowing one’s HIV status dominates all aspects of behavior in relation to HIV. People were said to not want to know—even if they suspected that they might be HIV positive—because this could bring social isolation and exclusion and it was not believed that treatment improved health. The social aspect of exclusion was regarded as “not having a life” and was perceived as more important than the physical deterioration due to the disease.
—Your fame is more important than your health…rather than getting [a] bad name you suffer from the disease. (Male KII)
All other categories relate to the core category and will further illustrate the phenomenon of fogging the issue of HIV.
We found that the Ethiopian and Eritrean migrant population in Sweden consists of three different groups, and two of them had different reasons for leaving their countries. One group consisted of persons who had left Ethiopia about 20 years ago (early arrivers), the second group consisted of those who were born in Sweden (second generation), and the third group consisted of those who arrived here from Eritrea during the last 3-4 years (new arrivers). These groups had different approaches to the fogging of the issue of HIV.
The context of fogging the issue of HIV
The contextual conditions refer to general circumstances of importance for the fogging of the issue of HIV, and the causes of the fogging are embedded in this specific context. Three categories were identified as contextual conditions:
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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
The immigrants expressed feelings of loneliness, confusion, helplessness, and dependency on various authorities in their new country. Mourning the loss of a home country in combination with a poorly understood Swedish context and lack of language skills seemed to be crucial for these feelings of vulnerability.
Structure of the reception of asylum seekers
Swedish rules and regulations concerning the reception of asylum seekers were not clear to all participants, and there was confusion as to whether the health assessment was an offer or an obligation. Experiences varied between those who arrived many years ago and those who arrived during recent years because Swedish practices have changed over the years. It was pointed out that in some cases it took a very long time between the first meeting at the Swedish Board of Migration and the offer to have a health assessment, including an HIV test. Some felt this was “a waste of time” that could have been avoided.
Structure of the Swedish healthcare system
Access to the Swedish healthcare system, except in emergency situations, requires planning and language skills from the immigrant. An automatic telephone system with answering machines that provide step-by-step instructions requires fluency in Swedish. Misuse of interpreters, long waiting times for an appointment with a physician, and short office visit times might not meet the needs of newly arrived immigrants.
Causes of the fogging of HIV
Four categories were identified as causes that can explain why smokescreens around the issue of HIV were created.
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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)
The exile group here means the group of immigrant compatriots who know each other and who are, or once were, important to each other. The participants talked about the exile group as a community, almost as an extended family, referring to people from their own country who shared their context. Belonging to, or being excluded from the exile group was described as a key issue by some of the participants. Some of them had adapted and adjusted themselves to the norms of the exile group either because of social pressure or a strong wish to belong, while others distanced themselves from the group because they could not handle the same situation.
The dependence on the exile group heavily influenced the fogging because of ignorance of the transmission routes of HIV in combination with the circulation of rumors of suspected cases of HIV.
The transmission routes of HIV was said not to be clear to all compatriots and this led to “just in case” behaviors such as not shaking hands with an HIV-positive person, not using the bathroom after an HIV-positive person, not renting an apartment to an HIV-positive person, or not wanting to carry the coffin if the deceased person was HIV positive.
It was strongly remembered by both the early arrivers and the new arrivers that being HIV positive, or the mere suspicion of it, brought social isolation and marginalization that excluded the diseased persons from social interactions within both the family and the community.
—You do not want to have contact with somebody who has HIV, to be with or to marry or anything. (Female KII)
An on-going circulation of rumors of suspected cases of HIV made people afraid of being regarded as HIV positive because this could lead to rejection from family, friends, and the community.
The group of compatriots kept track of signs of HIV such as excessive weight loss, “silking” of the hair, and regular intake of medicines. Suspicion could be aroused by having social contact with an HIV-positive person, by being with a friend of a friend to an HIV-positive person, or even to be seen visiting any hospital clinic or buying condoms.
—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.
For early arrivers, who arrived in Sweden some 20 years ago, the exile group was initially felt as a source of safety.
—You trust your own people…you know each other. (Female FGD)
For this group, the fear of HIV expressed in the exile group dominated, and some even suggested that HIV-positive persons could form a community of their own and find their partners within that group. It was argued that this would be a source of support and would allow the HIV-positive individuals to talk to other persons in the same situation.
—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.
Some of the new arrivers expressed a longing for contact with compatriots.
—You feel alone, too. (Female FGD)
However, they also thought that it was difficult to relate to the situation of the early arrivers and the second generation and, therefore, did not engage in the exile group.
For example, they were still burdened by obligations towards their family and relatives left in their home country. These feelings were mutual, and the early arrivers and second generation believed that they did not have much in common with the new arrivers.
In this group of new arrivers, some experienced no difference between HIV and other diseases. Thus “fogging” was not as big of an issue to them.
—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
There were several reasons why the Swedish healthcare system was distrusted, including the health-seeking behavior in Sweden, communication problems, and misuse of interpreters. Distrust could lead to patients feeling that they were not given full information regarding their disease or treatment.
—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)
This mistrust was sometimes expressed in relation to HIV diagnoses.
—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)
Some participants described how they went to Ethiopia to have the diagnosis verified by an Ethiopian doctor.
Health-seeking behavior was described as different in Ethiopia and Sweden. The participants, whether they had been in Sweden for a long time or had arrived recently, expressed a need for prompt health care when they felt sick. Symptoms such as fever, diarrhea, and cough could very well indicate serious diseases according to their experience. When they were asked to come back in two weeks they felt unrecognized.
—In my country, you go there [to the doctor] and then you get treatment. (Male FGD)
They also described how the Swedish healthcare system was difficult to access, and this led them to go to places where there were emergency services or drop-in clinics.
—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)
Communication barriers aggravated the contact with the healthcare staff. Even if learning Swedish was a priority, fluency often did not come until long after they had come into contact with the healthcare system. The immigrants’ body language was not always understood by Swedish physicians, and their lack of language skills added to unsatisfactory encounters with the healthcare system. This sometimes created a need to have one’s health double-checked by a compatriot doctor who speaks the same language.
The lack of understanding often resulted in the misuse of interpreters, which were often used by the healthcare centers even when not necessary. This could be experienced as an insult, particularly if the interpreter did not correctly describe their needs or if the translation from the doctor to the patient was incorrect.
—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)
They might have managed better on their own or at least they felt that they should have been consulted on whether they needed an interpreter or not. It was also described how interpreters did not respect confidentiality and that “a leakage” concerning the HIV status of some individuals had occurred.
—If it spreads that they [interpreters] leak [information], then of course people do not dare to contact the healthcare system. (Male KII)
Lack of continuity and lack of trust when the interpreter turned out to be a relative or neighbor were other problems that contributed to the fogging of HIV.
A different type of health-seeking behavior could be detected among the newly arrived compared to the early arrivers and the second generation. They expressed a responsibility for their own personal health. They claimed that young people of today used the Internet to keep themselves informed and that they frequently discussed sensitive issues like HIV.
Misunderstanding of rights and obligations
There was confusion around confidentiality concerning HIV, the obligation to tell about HIV, whether HIV testing was mandatory, if asylum was linked to being HIV negative, and if the health assessment included an HIV test.
HIV-positive persons felt protected by the law of confidentiality, but it was also claimed that it gave other HIV-positive individuals an opportunity to hide their status even in situations when there is a legal obligation to tell. In addition, the right in Sweden to abstain from HIV testing was believed to be a right not to disclose or even not to know about one’s HIV status.
—OK. Confidentiality. Then no one needs to know and I will go on living like before. (Female FGD)
As a response to this misunderstanding of the law of confidentiality, the idea was expressed that there should be no law of confidentiality because it provides opportunities to hide the disease and this facilitates the spread of the disease and contributes to “fogging the issue of HIV”.
—When I am diagnosed as HIV positive, it stays between [the doctor] and me… that is wrong. (Female FGD)
There was a belief that the offer to undergo a health assessment—including an HIV test—upon arrival in Sweden was an obligation exercised by Swedish authorities, and there was an uncertainty as to whether anyone who was HIV positive would be allowed to stay.
—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)
Some described how they felt that they were not told about the HIV testing and others said they were told only when the testing was already done. Some participants in the FGD claimed that they never received an invitation to a health assessment, while others simply ignored the invitation they did receive due to confusion about the right to refuse a health assessment and HIV testing. Others accepted the invitation and went for the assessment because they felt obliged to do so, not because they were concerned about their own health.
Some expressed the opinion that HIV testing should be mandatory because they felt that it is important for everybody to know one’s own HIV status.
—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)
Others, however, claimed that the right to decide for oneself should be protected. If they were not asked for permission to be tested for HIV when they arrived in Sweden, they felt that they should at least have been informed of the test ahead of time.
—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)
The newly arrived, however, expressed concerns about their own health and wanted to be examined as well as tested for HIV.
—It was good. It concerns our health and that means it is good. (Male FGD)
Fearing the consequences of HIV
To receive the diagnosis “HIV positive” created an overwhelming sense of fear based on previous pictures of diseased persons and unsuccessful treatment.
—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)
A fear of not being able to lead a normal life, or create a family, or of being forced to divorce a beloved spouse was also described as was a fear of consequences for the children.
—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)
Social exclusion was the strongest fear and was something that all participants seemed to be familiar with.
—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)
Among the newly arrived, some felt that the younger generation thought about the issue critically, was well informed about treatments and their consequences, and talked more openly about HIV. It was claimed that those who were older were not as well informed and as a result did not talk openly about HIV.
—We in the younger generation talk openly about it. (Male FGD)
Some of them had HIV-positive friends who had disclosed their status and who were now receiving treatment. They explained that they had come to forget about the fact that their friends were HIV positive after a while and that their attitude towards HIV had changed due to this. Still, even though knowledge about HIV had improved, the fear of the social consequences was very strong. Therefore, protecting one’s reputation by avoiding any activity that might cause suspicion was a priority.
Conditions intervening with fogging the issue of HIV
The intervening conditions make up the broader structural context that affects the fogging of the issue of HIV and the decision to be tested for HIV. Two main intervening factors were identified:
Influence of previous experiences from the country of origin
Images and experiences from previous lives in Ethiopia and Eritrea were kept alive in the exile group, and these even influenced members of the second generation. Many of the early arrivers had experienced HIV/AIDS during the early phase of the epidemic in their home countries when ART was not yet available. Families of sick persons were said to hide the reason for death because having HIV in the family would automatically mean exclusion from society. Other diseases, such as cancer, or other disabilities were also said to be hidden by the families.
—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)
As HIV developed into AIDS, many of the participants described how they were emotionally involved in the suffering of relatives and friends. This created a strong and lasting memory of hopelessness and fear in connection with the disease, and even recent discoveries in treatments have not been able to erase them.
—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)
It was also remembered how families would deny their HIV-positive members for fear of being abandoned by the community.
—I know HIV-positive persons whose families have cut the strings to them. They don’t want to know about them. (Male KII)
Those who experienced the launching of ART in Ethiopia in 2006 also observed that the treatment did not always help and that sick people did not always improve. Some people neglected the issue of HIV testing because they thought that there was no effective medicine.
—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)
Some HIV-positive persons died despite of ART treatment, sometimes because they initially denied their symptoms and sometimes due to toxic reactions to ART.
—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)
This resulted in late testing for HIV and subsequent late onset of treatment, which had negative affects on their prognosis. They also died and thus it was still constantly heard that someone had become ill with the disease and eventually passed away.
Fear of disclosure also caused a failure in ART compliance, and it was described how those who were on ART struggled to hide their use of the medications.
—For me to go there and get my medicine. It has been a pain. (Male KII)
Others remembered that ART came late to Ethiopia and Eritrea in comparison to Western countries, and that initially many people were excluded from access to ART. Therefore, there was no large-scale experience or knowledge of ART and it was still believed that being HIV positive would lead to exclusion from society and an early death.
—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
Participants described Ethiopia as a religious country, and because one of the transmission routes is sexual contact, being HIV-positive in their eyes became a marker of having led a “bad” and socially unacceptable life according to their holy books in which, for example, premarital sex and unfaithfulness are regarded as sins and are prohibited. Therefore, the additional aspects of sin and shame were added to the fear around HIV. Culture and religion were seen as tightly connected and had a strong impact on people’s lives.
—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)
Many of the participants believed that most people automatically related HIV to sexual transmission, while transmission via blood transfusions was neglected.
—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)
Even the word “HIV” could be regarded as a bad and “dirty” word among some of the elderly and, therefore, should not be used.
Interacting strategies in fogging the issue of HIV
Actions and interacting strategies describe the different actions taken by individuals or groups in order to deal with their situation, thereby reinforcing the “fogging” of HIV and contributing to the delay in HIV testing.
Three strategies were identified:
Hiding the truth
Whether the patients accepted an HIV diagnosis or not, they thought, “this must be hidden from others” and even their closest family members were said not to be trusted.
There were persons who felt that they could still live a good and fairly “normal” life even if they did not disclose their HIV status, while others confessed to a trusted person and still others had a personal and direct contact with their God to ease their burden.
—You can tell only God. If you tell others you know for sure that they will not have any contact with you. (Male KII)
The fear of being seen visiting an HIV clinic led to strategies such as travelling to other cities for treatment, secretly going for HIV testing after each visit to their home country, covering themselves with a burka when visiting the HIV clinic, calling the open ward ahead of the visit to ensure that the waiting room was empty, or using the emergency exits to reach the HIV ward.
Living in denial
Fear of social marginalization led some people to not want to find out their status and thus they avoided testing and health assessments. If they were HIV positive, and when the symptoms became obvious, then they could turn to a healthcare clinic for other reasons as an excuse to go for HIV-testing and subsequent treatment. However, this often meant that the HIV diagnosis came late, and this had a negative effect on the treatment and prognosis. Others did not adhere to their treatment plan when diagnosed as HIV positive because of denial. Some of the older generation were said to even deny the existence of HIV and did not want to use the word and left the room when there was anything concerning HIV on the television.
—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)
Seeking advice from outside the healthcare system
Taking advice from previously arrived compatriots not to have a health assessment or HIV test was common among the early arrivers who claimed that their focus was on issues related to the asylum process. Therefore, it was argued both in the FGDs and in some of the interviews that the health assessment should be carried out as soon as possible after arrival in Sweden in order to avoid influence from others.
Consequences of fogging - delay of HIV-testing
The main consequence of fogging was the delay of testing and the subsequent delay of treatment. It was described that in some cases the person had denied the necessity of HIV testing and consequently delayed testing while still living in their home countries. Therefore, to delay HIV testing in Sweden was simply a continuation of a previous behavior.