Table 4. Themes Identified through the Interviews
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Theme
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Brief Description
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Experienced distress after being diagnosed HIV-positive
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Participants experienced emotional or physical distress and/or struggled to adapt to living as an HIV-positive person during initial period of diagnosis, throughout life, or described no negative time in their lives as it pertains to the adjustment to being HIV-positive.
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Perceived and experienced discrimination due to being HIV-positive while in Spain
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Participants had perceived fear of discrimination, experienced discrimination, experienced differential treatment, ignorance about HIV, as well as described not having any discriminative incidents as an HIV-positive person.
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Barriers encountered when initially trying to access free healthcare services in Spain
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Participants experienced systematic barriers (not being eligible to receive public health insurance card) and administrative barriers (front office staff at the hospitals) while trying to access free healthcare services in Spain.
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Possible reasons of positive experience when initially trying to access free healthcare services in Spain
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Participants identified sources who gave them initial guidance on the process of receiving free healthcare services and were perceived by the interviewer as a possible reason of overall positive experience. Specifically, guidance from an NGO, from a friend, hospital staff, or personal effort.
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NGO, nongovernmental organization.
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Main themes identified
Table 4 presents 4 themes identified during the interviews. All 4 themes address life experiences of the participants and the systemic barriers and/or enablers they encountered while initially trying to access healthcare services in Spain.
A. Theme 1: Experienced distress after being diagnosed HIV-positive
The majority of participants expressed difficulty with accepting becoming HIV-positive, with managing the health effects of having HIV or of its treatment, and with sharing the diagnosis with loved ones. For example, Patient 2 shared the following anecdote:
Patient 2: “At the start I was very depressed. In my case I had a shock and it took me 15 years to talk about it, and I talked about it in AVACOS-H. It was incredible horror, panic, the world came down on me, I had adolescent children, and they were in the waiting room at the hospital. One of them heard the diagnosis and told the other. They found out like this, because if it was for me, I would just have carried this alone.”
(AVACOS-H is a Valencian Association dedicated to HIV, AIDS, and hepatitis.)
Similarly, Patient 4 described experiencing distress due to the process of accepting the diagnosis and sharing it with loved ones.
Patient 4: “My experience when I came here was very bad, emotionally. This man, at the NGO, who I think is a psychologist, talked to me a lot and helped me understand many things. He told me that I am not the first or the last who is going through this. I had fear for my family as well because they were asking me how I was and what happened. Only my 3 daughters know about it. I did not want to know anything about anyone, because I had fear of restarting my life. I had a Spanish boyfriend and he did not know either.”
In the same vein, Patient 5 described experiencing distress due to the process of assuming the diagnosis and sharing it with the family, and also dealing with the treatment side effects.
Patient 5: “(…) They told me that I was HIV-positive and you can imagine what I was thinking, oh my God, my little children, my husband. They told me do not worry, that you can last for 10 years. Imagine it was 2003, I had 7- or 8-year-old kids and another who was 12 or 13 years old. So little, and imagine they tell you this, that you can last 10 years, my head went crazy. In the end I started the treatment, but it gave me an incredible allergy. I could not wear clothes because everything was itching, another [medication] made me vomit, and I could not walk, but I was looking in the mirror and every time I was seeing myself marked by another treatment. Because all treatments were hurting me I stopped taking them and I spent one and a half years without any treatment before I came to Spain. The second treatment that they gave me here was effective (…) My friends did not know because there [referring to her country of origin] you could not say this. Sincerely I did not have any support.”
Similarly, other participants, such as Patient 7, expressed difficulties due to lack of treatment in their countries of origin, and had the following reaction after being diagnosed:
I will die. I thought that I will die.
Another participant (Patient 10) expressed that it was necessary to be positive; however, it was hard to initially adjust to the knowledge of being HIV-positive.
Patient10: “If you are positive, it will give you a lot of fear; you are scared to enter this world, because it is not easy. You go to bed thinking that you have the disease and you wake up knowing you have the disease and it is hard. In the beginning it is hard to overcome this thinking, it is hard to overcome, but when you accept it then you know that you will live with this until the end of your days.”
A few participants did not express having strong emotional distress due to being diagnosed with HIV. They took care of themselves (received treatment, lived a healthy lifestyle); however, they nonetheless avoided sharing information with others.
Patient 1: “When I found out about it, I knew I had to live a bit differently, and did not get upset. So, I was taking care of myself. Especially when I was not taking any medication, so I ate well and slept well. Because I did not have a medication, I was limiting my life a bit. I do not feel like I have HIV. I go on as if nothing happened to me.”
Few participants expressed no or limited emotional distress while dealing with their diagnoses or life as HIV-positive persons, contrary to the majority of immigrants who were interviewed. For example, Patient 3 shared the following:
Patient 3: “(…) I got it and that is it, it is something that you do not choose (…) you have to accept it. I think I accepted it quite well. However, it was still a process of adaptation (…) I know that I have it, but it is controlled (…) sometimes I do not believe that I have it. I know that it is there and I take care of myself, I take my medication (…)”
Another participant (Patient 6) explained that, although it was hard to adapt to the idea of being HIV-positive, the support of her partner made it manageable for her.
Patient 6: “For me it was hard, it is a hard situation. Knowing that you are limited in many things (…) but I was lucky to have a partner, we were together, we were in the same situation (…) I cannot imagine people who are alone, people who do not have support of a partner or family members or of a friend or similar, because friends discriminate too.”
B. Theme 2: Perceived or experienced discrimination due to being HIV-positive in Spain
The majority of participants experienced discrimination or expressed fear of possible discrimination due to their HIV status. For example, Patient 12 said the following:
Patient 12: “We went to a pool in a village and the owner told his subordinates not to let us in the pool because we will contaminate everyone with AIDS. In the hospital as well. I was in the observation room and I asked someone for water. He was slow to bring it and I heard them talking. I heard one worker telling another that he should be careful with me because I have HIV. I got angry and I told them, “I will not contaminate your fellow worker if he brings me a glass of water.”
Patient 11 also noted how she was treated differently due to prejudice or lack of knowledge about HIV and how it could be transmitted.
Patient 11: “I lived with my niece who was living with her aunt. This woman knew of my health condition but her children did not. Once I was cooking a stew and I took a spoon to try it and she [referring to the aunt] thought I was planning to put it directly to my mouth. She told me “put it in your hand.” I told her, “I was planning to do that.” I saw where this was going. She was asking, “How are you?” “You have to be careful with these things.” Of course, I was very careful, including after I showered. I leave the bathroom as if no one has entered it.”
Some participants described having fear of discrimination in different situations in their lives in Spain.
Patient 10: “It is a country with people of different ages, and you cannot compare a person who is 80 or 70 years old with one who is 20 years old. Older people bring a lot of stigma and taboos to many situations. It does not matter how much you say that Spain is free and is diverse and there are a lot of liberties, the society here is still trying to accept things.”
Patient 10 also talked about perceived fear of being denied employment or being fired because of his HIV status.
Patient 10: “One also has fear in an environment of employment when you think “They will do a test for HIV and it will come out positive, and they will fire me, they will not want me, they will reject me.”
Similarly, Patient 2 described her actual experience when trying to get a job.
Patient 2: “Recently, in some jobs they no longer discriminate because of age and HIV status, because in some other jobs they continue to reject you for other reasons, but in reality, because they do analysis and HIV status comes out positive. Because they want to be sure that people will not miss work, contracts are short, they want to get rid of a lot of problems. They think that people who have HIV will be constantly in the hospital.”
On the other hand, Patient 8 described a violation of her right to doctor-patient privacy because she had HIV.
Patient 8: “My partner did not know it [referring to her HIV status], and when I told my doctor, I felt liberated. This doctor made me feel safe, but when I left the room and my partner entered, he told him “How is it going with your partner, so many years as a HIV patient?” When he came out of the room, he gave me a look. I wanted to report him [referring to the doctor] because it should not be like this, because supposedly I am signing a document that says that whatever I tell my doctor is confidential.”
Few participants expressed limited or no experience of discrimination or perceived discrimination due to being HIV-positive, however their responses were nonetheless telling of the broader social conditions around HIV. For example, Patient 1 shared the following:
Patient 1: “Because I never shared and I never talked about it, I never had this experience.”
C. Theme 3: Barriers encountered when initially trying to access free healthcare services in Spain
The majority of participants who had negative or somewhat negative experiences while trying to access free healthcare services mentioned encountering systemic barriers; specifically, not being able to receive a public health insurance card. Patient 3 discussed problems with meeting the requirement of being registered in an Autonomous Community (AC) for the minimum months required in order to apply for a public health insurance card.
Patient 3. “Applying for a public health insurance card was a problem at the start, because I arrived in Spain and here it is fundamentally important to be registered in an AC. I spent 4 months without meeting someone who would register me in the AC. I was paying rent but no one ever registered me there. I got registered in my fourth month in the AC.”
Similarly, Patient 11 described problems with meeting the requirement of being registered in an AC in order to apply for a public health insurance card.
Patient 11: “Everything had to be done one after another. Analysis, applying for a public health insurance card especially, because I was not previously registered 3 months in the AC as they required. I did not have that yet. They asked me for the proof of registration in the AC and I just gave an address of the place I arrived to.”
Another participant (Patient 6) had difficulty getting an appointment with the social worker at the hospital to apply for the public health insurance card. According to the participant, he thought the social worker could grant a public health insurance card, as advised by a friend.
Patient 6: “The admission and information desks at the hospitals need a reason why you want an appointment with the social worker. They were telling us different reasons why they could not give us an appointment with the social worker. They told us that in order to get such an appointment we already needed to have a public health insurance card. We explained that we did not have the card and that is why we wanted an appointment, but they told us that the social worker was not for that. We went there because our friend received the card this way, but in another institution or health center.”
When the interviewee was asked if the admission or information staff at the hospital explained where they should have gone to apply for the card, Patient 6 answered “No, they never told us.”
Few participants expressed limited to no barriers while trying to access healthcare services in Spain. For example, Patient 2 shared the following:
Patient 2: “(…) I was talking to the people with the truth, I was telling them, “listen, we are trying to have a normal life in Spain, have all of our documents in order, we do not want anyone to give us gifts”, but it could have been because I am HIV-positive they were immediately giving me an pubic health insurance card with validity of 3 months, 6 months, depending on the regional government (…)”
Patient 6 also expressed experiencing no barrier in receiving a public insurance card necessary to access free healthcare services in Spain.
Patient 6: “Here in Spain, I was given one paper that allows me to live in Spain so I did not have any problems, look here it is (…) for all the hospitals.”
D. Theme 4: Possible reasons of positive experience when initially trying to access free healthcare services in Spain
This theme expresses the notion of a “guiding source” who possibly influenced participants’ positive experiences when initially trying to navigate the public health system in Spain. The majority of the participants mentioned guidance from a local NGO who showed them pathways to receiving free healthcare services and a public health insurance card. They found an NGO through personal effort or a friend. Patient 11 described her experience of trying to receive treatment for HIV in Spain through the help of a local NGO, as follows:
Patient 11: “I came here with enough medication for one month. When it was gone, I thought, “What do I do now?” I searched on the Internet and I said, “There should be some organization here dedicated to HIV-positive people that can help me in this situation.” I found AVACOS-H. I called them and they answered and asked me, “Can you come in now?” Of course, I went because I had been without medication for two weeks. When I explained my situation and how I was, Diana helped me a lot. She immediately talked with a doctor for me.”
Similarly, Patient 10 described how everything was organized for him by a local NGO as follows:
Patient 10: “The Red Cross guided me to receive a public health insurance card: right away they helped me talk with a doctor who gave a referral, after which I went to ambulatory care and talked with a social worker to whom I explained my health needs and that I needed treatment. Right away I was given a health insurance card and a doctor gave me the treatment I needed.”
Several participants shared how friends guided them through the process and helped navigate the system. For example, Patient 1 expresses how a friend, who immigrated to Spain before him, explained to him where to go and what to do.
Patient 1: “I came here with help from my friend from Cuba. He came here two months before I did. Thus, he already navigated all these formalities and he explained to me what I had to do. I went to the medical center. But I was not registered in the AC. I explained that I was HIV-positive and that I had to take a medication. I talked with a social worker and she processed everything for me.”
In the same vein, P12 noted the following:
Patient 12: “A man that I was married to was coming to Valencia (…) When he arrived, he told me “do not pay anything.” I received a bill at the hotel where I was staying. He told me, “Do not pay anything and this will be resolved.” I went back with him [to the hospital] and that is when I started doing all the paperwork and public health insurance card...”
Similarly, Patient 9 talked about how a friend helped her complete the requirements to receive a public health insurance card and guidance received from a local NGO to pursue other possible help.
Patient 9: “Yes, the woman in the apartment where I was living helped me get proof of registration at this address. AVACOS-H also helped to see if I could receive financial assistance.”
All participants shared having some level of guidance from a third party (such as an NGO, hospital staff, or a friend) that helped them navigate the Spanish healthcare system.