Twenty people were interviewed (19 in person and one via Skype) between 18 October, 2017, and 29 April, 2018. The participants were composed of five women and 15 men, representative of Istanbul, ranging in age from 27 to 55 years. Two married couples were interviewed as a couple upon their request. Research participants had varied social status profiles. They had been living with HIV for 1.5 to 20 years. The majority of them were single and associated with NGOs active in the field of HIV-related issues. Since the focus of the research was PLWH’s experiences in their HIV diagnosis and treatment processes, the participants’ sexual orientation was not questioned, and only their biological sex was taken into account. The number of male participants was significantly higher than that of female participants. However, the distribution of our participants by gender was in line with the data on the distribution of PLWH in Turkey by gender. A summary of the demographics of the study participants is given in Table 2.
a GHI: Denotes the insurance that finances employees’ healthcare expenses and is used in state hospitals and health institutions; the unemployed may also have this insurance on the condition that they pay the insurance charges; covers diagnosis and treatment of HIV (2).
b PHI: The customized insurance type determined in accordance with certain limits and general requirements and used for healthcare expenses; does not cover diagnosis and treatment of HIV (33).
The type of health insurance that our participants benefit from varies. All of the participants asserted that they do not use their private health insurance (PHI) for HIV treatment since this type of insurance does not cover HIV treatment and/or insurance companies can notify their employers of their HIV status. One of the participants was a foreigner and did not have any health insurance.
The results obtained from the thematic analysis were examined in seven contexts, which were attributed to the clusters of themes while mapping the thematic pattern (analysis step 6): (i) physician-patient communication around the diagnosis, (ii) being diagnosed with HIV, (iii) impact of HIV diagnosis on patient’s life, (iv) PLWH’s relationship with their physicians, (v) PLWH’s relationship with their spouses/partners, (vi) PLWH’s experiences in healthcare settings, and (vii) PLWH’s struggle with the disease. The contexts, main themes, sub-themes, codes, and functions/results are shown in Tables 3–9.
Physician-Patient Communication around the Diagnosis
Two main themes, which concern physicians’ reluctance to inform the patient fully and their different approaches while doing so, are classified under this context (Table 3).
Withholding Information from the Patient: The majority of the participants stated that they were tested for HIV without their knowledge when they went to the hospital for other health problems or to get an official health report required from every couple before marriage. Moreover, they asserted that they were not informed about preliminary test results when they were asked to give a blood sample for verification, and they thus felt that healthcare professionals withheld information from them.
“We need to redraw blood from you” And I asked why? They said they couldn’t tell it at that moment. It was exactly like that. I said “You have to tell me because you requested me to come again. You want to draw blood, it’s my right to know.” “No, we don’t want to turn your stomach by saying it now.” That’s exactly what they said. (Male, 34 years old, 3 years since HIV diagnosis)
Informing the Patient about Diagnosis: In addition, notifying the patient on the phone, informing the patient immediately after diagnosis about the potential HIV-related problems, and not giving whole and complete information or giving wrong information were deemed as inappropriate approach for two rationales. First, since such difficult conversations are a form of breaking bad news, the physician should take adequate time to talk to the patient and should do so in person unless there is an obstacle precluding this option. Second, for the same reason, the physician should not give all of the information to the patient at once but, rather, wait for her to digest the bad news before continuing with further details.
[The doctor] told me that I should hide this from my family, I shouldn’t be so enthusiastic about finishing school, and because of this, my work life could be affected. He even advised me to suspend school for some time until I pulled myself together. I was shocked but still had the impression that what he said was not so logical, but horrifying. (Male, 28 years old, 6 years since HIV diagnosis)
Moreover, informing the patient in the presence of family members and not acting attentively while giving information in the eyes of the participants were categorized as inattentive approach.
Two young doctors came to my room and told me the diagnosis when my mother was there. Now, I think that it’s a very serious violation of rights. I may or may not want to share it with my mother. I don’t think adequate attention is paid to the patient’s confidentiality. (Male, 28 years old, 3.5 years since HIV diagnosis)
On the other hand, physicians preferring an isolated environment to notify the patient and to inform them about the test results were evaluated as attentive approach.
(…) [the doctor] was so friendly and answered my questions one by one by building such a healthy relationship and informed me in such an appropriate manner that I realized guidance like this relieved me a lot. I mean, I saw how precious it is to have a good relationship with the doctor and to get counseling services during the diagnosis. (Male, 28 years old, 3.5 years since HIV diagnosis)
Being Diagnosed with HIV
Participants’ experiences related to blaming oneself after the diagnosis, experiencing hardship in confronting the disease, and fear of not being taken care of due to being diagnosed as HIV+ were the main themes we examined in this context (Table 4).
Participants’ Feelings: It was seen that the participants’ main source of information about HIV was the news on television and in newspapers. Some of the participants stated that they had never thought they would have AIDS since, according to their view, it is a disease that homosexuals and sex workers have. On the other hand, the participants who did not share this opinion and those who had proper knowledge of HIV tended to blame themselves as they failed to protect themselves from the virus.
(…) over the years so many pieces of information accumulate in your head, in your mind. Out of the blue, I pictured a scene: a famous journalist is bargaining with a blonde female sex worker, she says she has AIDS. (…) I told myself that I was neither blonde nor a sex worker; this couldn’t be possible; such a thing wouldn’t happen to me. (Female, 44 years old, 14 years since HIV diagnosis)
You experience a huge intrinsic stigma. “How can it be possible when I have so much knowledge about it?” You keep asking yourself. You get mad at yourself and blame yourself. (Male, 28 years old, 3.5 years since HIV diagnosis)
The participants did not want to acknowledge their condition for a long time after the diagnosis; some even refrained from seeking treatment. Moreover, due to the discrimination instances they had known of in healthcare institutions, some participants developed fear of being rejected by hospitals when they needed to undergo an operation.
I don’t know what to do if I need to undergo an urgent operation. I have concerns. (…) Since I’m also a physician, I’m aware of some things. I know there are persons who have not been operated on. This could happen to me, too. (Male, 41 years old, 2 years since HIV diagnosis)
Impact of HIV on Patient’s Life
In this context, changes occurring in the participants’ lives and in their relationship with their family members and friends constitute the main themes (Table 5). Their concerns center on whether to share their diagnosis with others, adherence to treatment, decisions regarding sexual activity, and issues surrounding parenthood.
Changes Occurring in Patient’s Life after Diagnosis: One important change in participants’ lives after their diagnosis was ceasing their sexual activity. In addition, participants tended to isolate themselves from social interactions considering the possibility of being exposed to discrimination and fearing transmitting the virus to other people because they did not know the modes of its transmission.
(…) I haven’t had any [sexual intercourse] for 14 years. I don’t want it. Anyway, I can’t find anyone like me. It’s difficult, especially in this country. (Male, 53 years old, 15 years since HIV diagnosis)
“Why bother? I’ll die in any case, so I should die without disgracing myself,” I said to myself. If the doctor also has this projection [that I will die], if the one who is supposed to support me treats me badly, how can I explain it publicly? I don’t have to explain it, though. If my life is bound to end, it will. Then, I didn’t leave home for several days. I thought I could change the city I lived in; then no one would know me. And I left the city. (Male, 39 years old, 3 years since HIV diagnosis)
Changes in Family Dynamics: The participants stated that their family relationships were affected either positively or negatively after they shared their HIV status with family members. Some participants expressed that their families were supportive in this process.
How well they looked after me and how much attention they paid to me... (…) I thought had to get better. I almost went crazy seeing them feeling sorry for me. It’s the same now; they call me every minute. They tell me not to worry no matter what happens. Thanks to them… (Male, 34 years old, 6 years since HIV diagnosis)
Four of the participants stated that their families ended their relationship with them and put the blame for contracting the disease on the lifestyles they pursued.
I came back to Turkey so that my family wouldn’t find out. They found out later, of course. They told me “You’ve been changing lovers all the time; you’ve been on the loose; you deserved it.” I’ll never forget that. (Female, 40 years old, 20 years since HIV diagnosis)
Some participants, on the other hand, decided not to share their diagnosis with their families.
I didn’t want to share it. Well, it was because they don’t have awareness of this disease and haven’t encountered it before, and they aren’t healthcare workers. I mean, everything is under control; what needs to be done is being done at the moment. I didn’t want to upset them. (Male, 41 years old, 2 years since HIV diagnosis)
Changes in Friendship Dynamics: It was observed that the participants’ decision to disclose their HIV status was influenced by social dynamics. Although most of the participants said they were supported by their friends after diagnosis, several stated that their friendships ended and their friends avoided close contact with them.
People around me don’t know it either. I don’t want it to be known. I don’t want it because (…) someone who has no idea about the disease would say “Look, he has AIDS!” In the society we live in, even that happens; they do not want to shake hands with us. So, I think no one needs to know it. (Male, 34 years old, 7 years since HIV diagnosis)
I lost only one of my friends. He was a really close friend that I really liked. He said, “Dear, I’m so sorry too, see you later.” But he never called again. How long? It’s been about ten years since we last met. There wasn’t any problem between us. (…) He should have called to see if I died or not. I got really upset, but, of course, there was nothing to do. (Male, 39 years old, 12 years since HIV diagnosis)
The majority of the participants asserted that they had not had any problems with their friends, and their illness had not affected their relationships.
When I was in the hospital, I had lots of visitors and phone calls. It seems that I had lots of people who loved me. I always had flowers in my room, lots of calls and messages on my phone. (Female, 44 years old, 14 years since HIV diagnosis)
PLWH’s Relationship with the Physician
The physician-patient relationship was found to be a determinant factor in patients’ perception of their illness process. The relevant themes are presented in Table 6.
Physicians’ Attitudes toward the Patient: Participants stated that the physicians’ positive or negative attitudes toward them influenced their treatment processes and led to changes in their lives after the diagnosis. They deemed the physicians’ misinforming them about the treatment process and medication use, estimating their survival time, and not establishing open communication with them as indicative of negative attitudes.
They said the situation was new and my immune system was very strong, so there was no point in starting medication then, and they suggested waiting for a while. After some time, I saw on the Internet that medication should be started immediately after the diagnosis. I went to see another doctor, and he said that delaying medication was pointless. I wish they started it right away. Afterward, I underwent a lymph node surgery. I might not have gone through that if I had started medication. (Male, 27 years old, 1.5 years since HIV diagnosis)
[The doctor] said he could keep me alive for another 15 years. “What do you mean?” I asked. I was 22 then; add 15, it makes 37. I imagined not being able to see my 40th birthday. I felt so bad. I thought of my mother. I left the room immediately. I was baffled and didn’t know what to do. I felt very upset. (Male, 34 years old, 7 years since HIV diagnosis)
In addition, the participants also stated that certain behaviors on the part of physicians caused them to feel humiliated.
“You sit down there,” she said to me. She opened the windows and the door, moved away from the desk, and took a piece of paper. It was only 15 minutes since I got the diagnosis. “How old are you? Are you homosexual?” she asked me directly. Then, she asked if I drank alcohol, smoked, had a nightlife, had had a lot of partners in the past six months… Well, at first, I had a humming noise in my head, but then it faded, and it turned to curiosity; I wondered what this woman’s intention was. (…) I remember her reopening the window when it got closed a couple of times. (…) Then, I left the room and tore the test results into pieces. (Male, 39 years old, 12 year since HIV diagnosis)
In this context, several participants stated that instead of making a mutual decision, they followed the physicians’ orders to avoid any problem from occurring. One of them, for example, said he could not object to his physician’s request to take his photo just because he was a physician.
He asked if he could take my photo, and I asked why. “As part of the follow-up; to keep record of your initial state, the treatment process, and afterward,” he said. I asked if I was in a bad state at that time and why he put it as now, before and after. He told me that he wanted to follow up on his patients visually. (…) He took a photo of me, which made me crazy, but I thought I shouldn’t oppose; after all, he was a doctor. (Male, 39 years old, 3 years since HIV diagnosis)
Most of the participants asserted that physicians and other healthcare professionals working at infectious disease clinics treated them sympathetically, provided professional guidance to them regarding their future life, and referred them to NGOs active in the field.
“Look,” he said, “we are here with you whenever you have a medical problem.” He handed me a piece of paper in which there was information about the foundation. He said, “You can contact them; they have a good counseling service. You can find any information you need there.” Then I received relevant information from them. (Male, 34 years old, 3 years since HIV diagnosis)
Both the nurses and doctors were very friendly. “Don’t worry, I hope you’ll get better, take good care of your children, look after yourself.” (…) I feel so depressed and confused, but I can talk to doctors about my worries. (Female, 34, 8 years since HIV diagnosis)
PLWH’s Relationships with Their Spouses/Partners
According to the accounts of our participants, problems regarding how PLWH’s souses/partners are notified of their diagnoses emerged as a prominent issue. As seen in Table 7, this is done in a variety of ways, some of which could be quite controversial.
Spouse/Partner Notification After HIV Diagnosis: As stated by the participants, various methods were used for spouse/partner notification. They favored some of these methods, while they thought that others negatively influenced their relationship with their spouse/partner. For example, they were pleased when physicians encouraged and supported them to notify their spouse/partner. They also appreciated when physicians informed their spouse/partner together with them.
I said [to the doctor] that I wanted to break up with my fiancée since I couldn’t tell her I had such a disease. He said, “just bring her over, let’s talk, then maybe she accepts.” I did so, and he talked to her. If he hadn’t talked to her, perhaps we would not have been able to get married. Now, my wife is the only one that I lean on. (Male, 34 years old, 3 years since HIV diagnosis)
One of the problems expressed by our participants was the inability to notify their partners. For example, single participants stated that they did not know exactly when they had been infected and, thus, could not contact all of their ex-partners. Moreover, those with multiple partners said they did not know the people they had had sexual intercourse with very well, so it was difficult to contact them. In addition to the shock of being diagnosed with HIV, there was an “infidelity” aspect in the case of married participants. Therefore, they feared the possible breakup of their marriage/relationship, which deterred them from notifying their spouse/partner.
Well, I had sex with another woman. I got this from her. Had I known, would I have done it? I didn’t tell my wife. I have two daughters. I didn’t tell her so as not to break up my family. After many years, she found out, but she wasn’t infected. After all, she divorced me anyway. (Male, 48 years old, 5 years since HIV diagnosis)
On the other hand, some participants stated that their spouse/partner was notified by their physician without their knowledge, which damaged their relationship. Moreover, one participant told his wife that he had had another illness to hide the actual diagnosis.
No, I didn’t know. (…) I mean I wasn’t hiding it, but I should have told her myself. [The doctor] told it to my girlfriend. (…) I’d rather have told her myself, instead of the doctor, and then we talked what was what anyway. (…) She got scared. We had a small crisis, but we got over it. (Male, 34 years old, 7 years since HIV diagnosis)
I went abroad for business and stayed there for three years. They told me I contracted HIV there. Then, I came back here. (…) To be honest, we [I and my doctor] told my wife that I had hepatitis. We had her and the kids tested for HIV as if they were at risk of developing hepatitis. Thank God, the test results were negative. And that’s it. But my prick conscience still aches. (Male, 35 years old, 3 years since HIV diagnosis)
PLWH’s Experiences in Healthcare Settings
The experiences of the participants in this context are presented via two main themes: confidentiality and discrimination (Table 8).
Failure to Protect Confidentiality: It was deduced from the statements of all the participants that their confidentiality was not fully protected in healthcare environments. One problem in this regard is the failure of the healthcare system, health databases, and PHI companies to take the necessary precautions to protect the confidentiality of the personal data/information of people receiving services from them.
Before I shared it with my friend, he had already shared it with another friend of mine because he could learn about my health situation by logging in to the hospital database system no matter which unit of that hospital he was working at. (…) Well, this means if you have any acquaintances working there, they can access those data. (Male, 28 years old, 3.5 years since HIV diagnosis)
I have private health insurance as well, but I didn’t use it for this illness because they immediately notify the institution where I work [about my HIV status], so I use my general health insurance for this. (Male, 34 years old, 3 years since HIV diagnosis)
In addition, participants stated that healthcare professionals did not pay enough attention to protecting patient confidentiality and that they frequently faced this problem, especially in physicians’ clinics and pharmacies.
Naturally, a friend of my father found out [my HIV status] as he was the head of the internal diseases clinic, and he told it to my father (…) I think it’s a very serious violation of human rights, right to privacy. (Female, 44 years old, 14 years since HIV diagnosis)
There were two other customers waiting next to me. I was sitting on a chair when the pharmacist asked the pharmaceutical technician to bring three boxes of X by shouting out the names of the drugs. Then, speaking loudly again, he said “Your medication is ready, Mr. Y.” The one sitting beside me stood up, and I understood at that moment that he was living with HIV. (Male, 28 years old, 3.5 years since HIV diagnosis)
It’s like this… For example, when you go in the doctor’s room, you see lots of files on his desk, files that are left open and with the patients’ names, CD4s, and visible test results. I see it very often. (…) People add me on Facebook, for example, saying that they had seen my file on the doctor’s desk. We get treatment from the same doctor, and they add me. (Male, 28 years old, 6 years since HIV diagnosis)
Moreover, the participants expressed that some health professionals ask questions such as “how did you get the virus?” out of curiosity, and they felt this reflected an unprofessional attitude.
I went to see a psychologist for the first time. Anyway, I was talking to her, telling her about it. She asked me how I got the virus. People are very curious about it. What’s it to you! (Female, 42 years old, 2 years since HIV diagnosis)
Being Subjected to Discrimination
The main concerns of the participants in this regard are healthcare professionals’ reluctance to operate on PLWH, taking excessive precautions before any medical intervention, scaring the patients, not seeing them as people, and feeling pity for them.
I went there for a dermoid cyst problem. (…) but I said I was HIV positive. He said, “I don’t operate on HIV positives.” “Why not?” I asked him, “Do I have a different chromosome structure?” He said they wouldn’t be able to provide the necessary environment to prevent infections. I didn’t get it. I sensed that he was abstaining. But I didn’t buy it—tell another lie! (Male, 28 years old, 6 years since HIV diagnosis)
But when they came into my room that morning for routine controls after my diagnosis was explained, none of them looked me in the face. “From now on, I’ll never ever touch anyone without gloves,” one of them said and pulled up her gloves. At that moment, I thought inspectors from the Ministry of Health had come to the hospital, but then of course, I understood that she was talking about me. (Female, 44 years old, 14 years since HIV diagnosis)
In addition, most participants that expressed relevant regulations should be developed so that PLWH could receive healthcare services from health institutions just like other patients without being subjected to any discriminatory acts and that healthcare professionals should be more attentive to behaving in a manner showing understanding of their condition.
I heard that only this hospital offers dialysis treatment to patients like us, which means that patients with HIV virus are deprived of this service. In the whole city of Istanbul, only this hospital and, as far as I know, another one in Maslak provide dialysis treatment to us. Can you imagine? A person living in Tuzla or Kadikoy, for example, has to come all the way to this hospital or to the one in Maslak. How strange! (Male, 55 years old, 1.5 years since HIV diagnosis)
As I said before, I went to a hospital, a private one, after I came back. There, a doctor said, “Don’t tell anyone about your illness, don’t go to state hospitals, and don’t give blood sample because they would fire you once they found out.” I felt horrified. Where should I have gone? (…), then I didn’t give a blood sample no matter who requested it. I lived like this for three years. (Female, 34 years old, 8 years since HIV diagnosis)
Some of the participants also stated that they think healthcare institutions do not want to provide service to them and that healthcare professionals working at private healthcare institutions are not sufficiently knowledgeable about HIV.
I had an epidermal cyst, and in order to have it removed, I went to the surgery clinic of the hospital where I get HIV treatment. They told me that they were too busy and referred me to another hospital. I went there (…) They said that providing healthcare services to such patients is not welcomed at their hospital. They told me “Go the hospital where you get treatment for it and have yourself operated on there.” (Male, 41 years old, 11 years since HIV diagnosis).
PLWH’s Struggle with the Disease
The participants used a variety of coping strategies for the problems they faced in their diagnosis and treatment processes (Table 9).
Patients’ Protecting Themselves against Adverse Consequences of the Disease: It was derived from the participants’ accounts that they tended to hide their HIV status in healthcare settings and in their social sphere so as to avoid negative reactions from both healthcare professionals and other people.
Of course, when I go to a dentist, I don’t tell him, “For your information, I have this.” So, I don’t experience such things. I don’t explain that I underwent this when I go to an ear, nose, and throat clinic for a cold or flu, etc. I don’t have to! I just explain the complaint for which I go there, and they do what they need to do. (Male, 27 years old, 1.5 years since HIV diagnosis)
Some of the participants stated that they attempted to find a new healthcare professional when they faced a problem, strived to stand up for their rights, and received help from foundations providing support to PLWH.
(…) only after some struggle, after going to the chief physician and telling him that I had been rejected, and with his intervention, was I able to have the surgery performed. (Male, 41 years old, 11 years since HIV diagnosis)
One evening, I had a problem with my medication. There was no one at the hospital that we could reach at that moment. It was a state hospital; whom could I call? I wasn’t getting treatment from a private hospital, so I didn’t have any contacts there either. What do we do in such cases? We call the foundation. (Male, 34 years old, 3 years since HIV diagnosis)
 The rate of females and males living with HIV was found to be 20.1% and 79.9%, respectively (3).
 Please note that these contexts are not pre-determined. In inductive content analysis, the emerging themes are not classified according to the existing assumptions or evidence.