Table 3 Issues impacting health-related quality of life of people living with HIV: analysis of focus group data

Social problems

191

Anticipated stigma

150

I fear being rejected by my relatives. My mother has never rejected me and nor has my father, ever, but I do fear rejection by my relatives because they … they would never ever understand. [PLHIV Focus Group, Barcelona, woman]

In everyday life, I’m very discreet [about having HIV] due to my fear of being discriminated against, or that people will be afraid that they will get infected or something weird like that. That they will have some strange reaction. [PLHIV Focus Group, Barcelona, man]

Socioeconomic vulnerability

22

For these people, the biggest thing is their financial uncertainty. Some people live with very little money, extremely little, with pensions that get regularly reviewed. The infection becoming chronic, and the improvement of their physical health also have an impact on the reviewing of those pensions. In the past, if you had a pension, whatever it was, they never changed it, and that provided a certain future stability for that person. Now, that stability does not exist, and people feel vulnerable in that sense. [Experts Focus Group, Barcelona, physician]

I haven’t worked in five years. The last jobs were temporary and ended unexpectedly. I’ve always thought that [the employers] knew something about my situation. [PLHIV Focus Group, Barcelona, man]

Physical symptoms

83

Sleep-related problems

28

There is another aspect that has always worried me in those patients and that is, for instance, from what I’ve been told, a certain emotional instability and lack of sleep, sleep disturbance, lack of rest.… They wake up, especially [when newly diagnosed with HIV], … they have told me that they wake up often; they are concerned; they don’t rest well. [Expert Focus Group, Madrid, physician]

Either I have trouble sleeping or I wake up in the middle of the night and go two hours without sleeping. It depends on the week more or less, on whether I have a lot of problems at work which keep me up at night because I can’t get them out of my head. [PLHIV Focus Group, Barcelona, man]

Fatigue

17

My main problem is tiredness. I have very severe chronic fatigue…. I had larynx cancer in 2012, and after radiotherapy, my energy levels never went back up.… My current struggle is to have a good quality of life and to rest. The company [where I work] has moved its headquarters to Sant Joan Despí, so I need to catch a train at six in the morning and I get back home at four in the afternoon. Then I lie down in bed like a mummy after lunch to rest, because I can’t … I can’t manage this pace. [PLHIV Focus Group, Barcelona, woman]

I have felt physically tired for a long time…. I have felt that it is difficult for me to start the day, that I’d rather not wake up, that moment between when I wake up and the activity begins, I wish I didn’t exist…. I attribute [the tiredness] to the fact that I am recovering from depression, but … it’s a physical thing. [PLHIV Focus Group, Barcelona, man]

Physical pain

14

Persistent chronic pain. I think that we should assess and thoroughly detail what type of pain, whether articular or muscular or.… To talk about it in terms of the degree of pain perceived by every single person. However, general pain is something that is often brought up at doctor’s appointments. [Expert Focus Group, Madrid, physician]

For a couple of years my bones have hurt a lot. I’ve mentioned it to the doctor and it could be the effect of the medication, but he doesn’t really confirm this. [PLHIV Focus Group, Barcelona, man]

Body fat changes

10

There is still a group of people who are survivors of a different era.… They may have body changes and, I am not sure if this is subjective, [but] women feel that it affects them more than men.… That is the feeling I have from the consultations. Another prevalent problem in some cases, more and more prevalent, is the uncontrolled weight gain, you know? Sometimes, for good reason, there are many totally unusual diets … high caloric intake, carbonated drinks… [Expert Focus Group, Barcelona, physician]

I began to notice that I was losing weight in my legs because I’ve always been athletic and had good muscles…. But I began to lose fat there, I began to notice my veins.… I said “Oh my God! What’s happening to me?” I went to the doctor, but the doctor did not resolve the matter. And for me, well, that affected me tremendously.” [PLHIV Focus Group, Barcelona, transgender woman]

Psychological problems

67

General emotional distress

43

One patient said to me: “It’s not only physical. It’s not just that my feet hurt because I have neuropathy. It’s that I haven’t developed myself. My soul hurts. I don’t have a job like everyone else, nor a pension. I feel old…. I don’t really have anything.” [Expert Focus Group, Barcelona, physician]

I think there is emotional discomfort linked to low self-esteem. For the person living with HIV, there are a thousand reasons, sometimes multifactorial but then linked to the sense of belonging or loss of social skills, with greater isolation, with drug use, unhealthy behaviours.... All of this is linked either by the path that the person had at the start, which is later somehow provoked by the diagnosis of HIV, or just by the diagnosis of HIV itself. [Experts Focus Group, Madrid, peer educator]

Anxiety/depression

24

You can’t sleep, sometimes you panic, you know? That feeling that when I go to bed: Ahh! [Inhaling.] I feel like I suffocate. And then it’s like if you wake up: Ahh! [Inhaling.] And it is, it is horrible. It’s horrible. [PLHIV Focus Group, Barcelona, man]

For me, one of the most important problems that negatively affects quality of life is mental health, with anxiety and depression being the most prevalent problems. They can also be multifactorial. [Expert Focus Group, Barcelona, physician]

Fear of the future

14

An issue, mostly among people who are growing old, is concern about the future. Because if, on top of that, you have financial issues and social issues, the concern about the future and the uncertainty about what is going to happen to you … impacts a lot on the quality of life of people with HIV. [Expert Focus Group, Barcelona, psychologist]

I have a family history of dementia, also a case of Alzheimer’s [in my family], and at the age of 64, well, when I forget something.… I think that tomorrow I’ll be like my mother, who is 91 and doesn’t remember anything. That is the great fear that I have. It’s maybe what worries me the most. [PLHIV Focus Group, Barcelona, man]

Some of the people I was close to, family or other relationships, slowly disappeared.… You see yourself alone and think, “How am I going to deal with this?” [PLHIV Focus Group, Barcelona, man]

Sexuality-related problems

38

Lack of libido

9

Sexual health issues. Not only sexually transmitted infections … but also issues related to the loss of libido. Especially for women. It’s a very important issue that affects their quality of life. [Expert Focus Group, Barcelona, nurse]

The problems of lack of libido, lack of sexual desire – especially in women. Especially in women who have been living with HIV for many years. It is quite common when you talk with women that they tell you about this problem. [Expert Focus Group, Barcelona, NGO professional]

Sexuality and HIV-related stigma

5

For years now, I’ve given up on sexual issues, only … focusing on masturbation. Because I also had that feeling of guilt, right? I said, “If I like someone, they want me … I also want them, but I feel bad, right? How am I supposed to tell them?” [PLHIV Focus Group, Barcelona, man]

Despite the available information, people anticipate the fear of, “How am I going to establish a sexual relationship when I have HIV? Do I say it or do I not say it?” It is often the main issue when dealing with sexuality. [Expert Focus Group, Barcelona, nurse]