After the analysis, a main theme: ‘Prioritizing integration − HIV ends up in second place’ and four subthemes: 1) Better opportunities in the new country than those that the home country could offer; 2) Better conditions for LGBTQI people than in their home country; 3) Navigating a new system: linguistic and structural barriers; and 4) Feeling like a second-class resident: racism, xenophobia and multiple discrimination were generated. The main theme, ‘Prioritizing integration − HIV ends up in second place’, described the participants’ experiences of life with HIV, where the biggest challenge is social integration in a new country, which took more time and effort than the HIV infection itself. In this regard, the challenges posed by HIV seemed to come in second place, after those related to settling in a new country.
Participants were grateful and described how fundamental rights and the welfare system in Sweden provided opportunities for better living conditions and care for migrants living with HIV than those that their home countries could offer. At the same time, they faced complex challenges in the form of linguistic and structural barriers, and multiple forms of discrimination simultaneously, mainly due to their race/skin color (racism), ethnicity (ethnocentrism), nationality (xenophobia), which limited their opportunities in the new country. These challenges were considered to be more problematic than the disease itself, although it was still present in their minds. Migrants thus prioritized, over other matters, learning the language and how to navigate the various public services involved in the integration processes in the new country. One participant expressed it this way:
But then when I came here, it was not HIV that was the most important/urgent thing, rather it was learning the language, understanding how the society works; “what is it like to live here?”, and so on. HIV ended up in second place, but it was there anyway, along with these thoughts [P1].
These experiences were also influenced by participants’ past experiences, social identities based on age, gender, sexual orientation, education, ethnicity and economic status, religion as well as the migration and health policies, legislation and practices within the Swedish context, resulting in varied experiences.
Better opportunities in Sweden than those that the home country could offer
Participants described better living conditions for people living with HIV as well as access to better HIV care and treatment in Sweden than in their home countries. Several participants had experienced strict rules, degrading treatment, prejudice and social stigma in their home countries, which often resulted in feelings of shame and discomfort. They felt that compared to experiences in their country of origin, Sweden offered opportunities for a more normal life, with entitlements to fundamental rights, without HIV-related discrimination. Participants were grateful for the existing social safety net in Sweden. This included housing, various types of social benefits and health care. One participant expressed gratitude for a good and safe welfare system in Sweden that did not exist in his home country and declared: ‘In Sweden, all people are guaranteed their own accommodation/housing, Sweden guarantees everyone the right to food, heat, water. Yes, the basic stuff you need to live. In my home country, one has to fend for oneself’ [P4].
Some participants highlighted how legislation in Sweden was protecting PLWH and guaranteing their human rights such as the right to work and education, as well as the right not to be subjected to inhumane and degrading treatment. Such legislation did not often exist in their home countries, where they witnessed that those infected with HIV were arrested, detained, dismissed or suspended from universities and working within the healthcare and public sectors:
I think the laws in Europe are such that your HIV diagnosis is not going to affect your access to work or university in the country where you live, or like wherever you work.... But in my country, you cannot even go to university with HIV. [P8]
Participants were also grateful for access to effective and comprehensive HIV care and support in Sweden, regardless of their legal status. Some reported that the medicines they received in their home countries were old, of poor quality, ineffective and had many side effects. Some were able to switch medicines after arriving in Sweden:
I took it [ARV] every day according to the prescription, but after I moved to Sweden, I had 3000 viruses [HIV copies per milliliter of blood] in my blood, and then when I received another treatment and medicines in Sweden, it dropped to 150 after a few months, you see the difference …big difference. [P12]
Participants also appreciated the availability of care and the opportunity to be able to communicate with treating physicians regularly as well as having access to HIV care regardless of whether they had a residence permit or not:
The first thing is, I’m not even legal in Sweden. I have no insurance. And I’m not even a student. Not working. And like, I have no rights, basically. But still, I get the same level of [HIV] treatment as everyone gets. That's the best thing that happened to me. [P8]
In contrast, they considered that HIV care was difficult to access, of poor quality and discriminatory in their home countries, where staff seemed to lack knowledge and had negative attitudes and prejudices against PLWH. Some participants described how they felt exposed in their home country because HIV services were not integrated or easily accessible. One participant portrayed the situation in his home country and said: ‘If you lived outside the capital, then you had to travel there every month to get medication. It was not even certain that you would receive medication every month either’ [P11].
Better conditions for LGBTQI people than in the home country
Participants belonging to the LGBTQI group who came from countries where homosexuality was illegal and where homophobic attitudes were prevalent experienced better conditions for living with HIV in Sweden than in their home countries. They described how they were forced to hide their sexual orientation and gender identity as this exposed them to dual stigma and discrimination as PLWH too. As a result, they were subjected to persecution, imprisonment, degrading treatment, hatred and death threats from relatives and society. They pointed out that current legislation in Sweden made it a safe and secure country where LGBTQI people could live a normal life and access HIV treatment without discrimination, as highlighted by one participant: ‘Coming to Sweden as a gay person, I feel safer. Nobody attacks me. You feel safe on the streets’ [P7].
Another participant recounted how she was subjected to sexual violence as a punishment for LGBTQI activism in her home country:
So, we were demonstrating when they were going to pass the law of killing all LGBTQ persons in my country. So, they got us and they arrested us and every day they would...they used to send in men in the night to rape us in these cells. So, it was a very horrible experience. [P2]
The link between HIV, sexuality and religion resulted in stigmatization and marginalization of LGBTQI-persons, both in society and within families in home countries. Getting an HIV diagnosis was considered shameful since it was associated with prostitution and homosexuality, as voiced by one participant: ‘When you belong to the LGBT community in my country. “The result is that you always get HIV at the end”, that’s what they say’ [P9]. Therefore, some preferred to hide their sexual orientation. Another participant described his initial reaction to his HIV diagnosis:
My mind went blank [when I was diagnosed], I was very scared, especially ashamed, not to die, but to show that I am gay, because in the beginning it was [HIV] a disease for prostitutes and homosexuals. [P4]
Their experience of HIV care in their home countries as LGBTQI persons was that they did not get the care they required because health-care professionals focused on their sexual orientation instead of their care needs. Some completely avoided seeking HIV care in their home country due to fear of discrimination and the perceived risk of being reported to the police. They were not convinced that medical staff were bound by professional secrecy obligations in relation to police authorities and worried that their sexual orientation would be revealed as illustrated in the quote below:
And I was being honest, I told them [health-care staff] that I had sex with men. And they gave all the reports to police…So, people don’t go to get treatment for their HIV because of that. Because they’re afraid that they’re gonna be jailed for being gay. [P8]
Navigating a new system: linguistic and bureaucratic challenges
Participants described not only the opportunities that opened up for them in Sweden but also the challenges they experienced. They talked about linguistic and structural barriers, lack of information about their rights, and a cumbersome bureaucracy that was difficult to navigate. Participants described various challenges that they faced in their daily life with regard to access to employment or available services including health-care services. They argued that their HIV status was not often an obstacle, rather the actual challenge lies in settling into a new society, as stressed by one participant: ‘But if you have your little job and can take care of yourself, will HIV be a problem?… No, you will be taking your drugs and HIV will not be something that will bother your life anymore’ [P9].
Language was considered as one of the biggest barriers to social integration as it restricted access to information about vital public services, individual rights as well as communication and social interaction in the new country. Participants pointed out that all available information was in Swedish, while sometimes in English, which made it difficult to understand. One participant explained: ‘Well, yeah. That everything is just in Swedish. It is really hard to know how to use it. They should also provide information in English or in other languages’ [P3]. Another participant recalled his experience as a newcomer: ‘Yes, then language barriers and lack of knowledge about rights, I think so, absolutely. I had almost no control at all over what one was allowed to do and which opportunities one had’ [P1].
Some participants reported difficulty communicating in different contexts due to language barriers. Participants appreciated access to interpreters, but felt uncomfortable about expressing themselves through interpreters, and not quite safe to have one in the room who could sometimes be an acquaintance or even behave unprofessionally, as stressed by one participant: ‘Yes, there was no interpreter on site but an interpreter by phone. I did not want to meet the interpreter in person’ [P10]. Those who had learnt the language, gained knowledge about vital public services and their rights, felt equipped to express their thoughts, that the challenges they previously encountered had disappeared and that they had better prerequisites for socialization and integration in the new country.
I think I have the tools that I need, and that’s because I understand how the society works, I know my rights and I can speak Swedish ... it’s like, yes, some of the challenges simply disappeared. [P1]
Besides language barriers, participants described structural barriers that made it difficult for them to navigate the Swedish system and utilize available services. Structural barriers were considered a major problem for accessing available services. It was difficult to know where to turn and what you were entitled to. A personal identity number and residence permit were considered as imperative, as they determined to a great extent what one was entitled to or not in the Swedish system. One participant said:
Arbetsförmedlingen (Swedish Public Employment service) said: ‘you are registered but to work with you, you must have a personal number’. Försäkringskassan (The Swedish Social Insurance Agency) were also saying the same. Yet the number had not come. You can’t go to SFI (Swedish for Immigrant school), get a job, if you don’t have a personal number. You can’t really access many things here. [P2]
Accessing available services was considered to be complicated and time-consuming and this was compounded by bureaucracy, paperwork and digitization. Most contacts were made through phones or emails with different types of booking systems, all of which could be difficult to navigate when one was in urgent need of help:
What I don’t like here [in Sweden] is most people are on the telephone, media, you see. It is not that easy to meet someone to talk face to face. Yeah, that is what I don’t really like here because eh, yeah: ‘contact this number, contact this mail, contact this, contact this, contact this’, [P9]
Feeling like a second-class resident/person: concurrent discrimination on multiple grounds
Participants described various forms of discrimination, based on their race or skin color (racism), ethnicity (ethnocentrism), language (language oppression) and nationality/nativity (xenophobia), that they experienced in their encounters with public services, as well as in daily life at the workplace and in the society. This was said to lead to minority stress, a feeling of inferiority, exclusion and loneliness. Several said that they were unfairly and ill-treated in various social contexts. Such discrimination was perceived as frustrating and made them feel like a second-class resident. One participant said: ‘Yeah, you are a second-hand person, second-hand citizen. They treat you like a piece of shit [laughs], but when it comes to Swedish people, they are extremely polite and understanding. It is annoying and frustrating’ [P7].
Several participants stated that the Swedish government was maintaining a facade of a welcoming country, but behind that facade hid a racist society that was not ready to accept ethnic/racial diversity. One participant reflected: ‘But sometimes it feels a bit upside down… Sweden receives a lot of people here and says: “everyone is welcome”, but the public is a bit racist. Eh, so sometimes you do not know what to think’ [P5].
Racism was also experienced in the public space. One non-white participant described such an event during a trip:
One time I was in a train and a guy said: ‘monkeys, monkeys’ in front of me and my other black friend. ‘Monkeys’ and he was even doing actions. Then I said: ‘Let’s not give him attention, let’s stand up, leave and go to another seat. And then he came and followed us and said: ‘monkeys’ [P2].
It was, however, common for participants to state that the discrimination and distinctive treatment that they were subjected to often took a more subtle form. The participants believed that society harbors feelings of, or there was a certain irritation towards, migrants in the society that made them even more vulnerable in everyday life. This was often expressed not through words but in the form of micro-aggressions, demeaning behavior and a cold shoulder. One participant said: ‘Maybe someone cannot tell you straightforward, but they may ignore you and you see that there is something happening because of how you look or… It happened to me’ [P6]. This contrasted with the cultures of their home countries, where people often expressed themselves bluntly when they disapproved of someone or something. They considered Swedes to be politically correct.
According to participants, the grounds for discrimination varied but it was mainly due to their ethnic/racial origin, and not specifically to their HIV status. They argued that few people knew about their HIV status in different social contexts. They, therefore, gave an account of discrimination that in many ways strongly affected their life situation. Many suggested that migrants constituted a vulnerable group that was discriminated against consciously or unconsciously, not only by individuals but also by societal institutions, regardless of where they came from, their education level, or whether they could speak the language or not. One participant argued that as long as you have another skin color (non-white) and a foreign name, you will always be considered as a migrant regardless of how long you had been living here or whether you were born in Sweden or not:
So, I do not think I will stop being a migrant here, as long as my name is not ‘Johan Andersson’ or as long as I do not look like what a normative Swedish person could look like. Also, the language .... It would be better [if I change my name] but I still do not think ... No, I do not think it will work out... [P11]
Some participants felt that their migrant status in combination with their HIV status resulted in or led to double or indeed triple discrimination, as stated by this participant:
Sometimes it’s like being an immigrant and HIV-positive person puts me in a more vulnerable position because you get discriminated on being an immigrant level and then discrimination on being HIV-positive level. Then, you are discriminated in combination of those two factors. So, it is like, being discriminated three times. [P7]
However, the experiences of discriminatory treatment and how it changed over time varied among participants. They described different experiences based on their skin color, ethnic origin, gender, civil status and language skills. One participant, MSM, with a light skin color who had lived in Sweden for many years reasoned: ‘I am fluent in Swedish, which means that most of the times I am not even perceived as a migrant just because I am white and speak good Swedish’ [P1].
Participants also found different ways to cope with their experiences. Some mentioned that they had survived many traumatic and stressful events, which had made them stronger and that was why they could handle discriminatory treatment that they were subjected to in Sweden. Others said that they got used to it and no longer let it affect them. They described different coping strategies that enable them to move forward. Some participants shared their experiences:
I have been operated on a thousand times. In my life, I have been beaten by two men that I had a relationship with, I have been raped… but still had a great strength in me, that I can stand up… I stand up and become a human being again. [P5]
Yes, in the past I used to be a bit sad and angry [when I did not get help or was discriminated against]. But now, I just endure it. [P10]