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The primary focus of this study was to explore the most difficult aspects of being infected with HIV for the adolescent. As mentioned previously, adults with HIV have been found to experience psychological as well as social ramifications from their diagnosis. Many of these themes became clearly evident while interviewing adolescents living with HIV. Four specific themes, or categories, of difficulties emerged: disclosure, medical adherence, relationships, and psychological burden.
How do I tell them? For the participants, this theme focused on the actual event of disclosing their HIV status to someone. For example, participants feared how they would tell someone, what words they would use, and how they would react to different facial responses by the person to whom they were disclosing. For the most part, the participants feared having to tell someone close to them that they have a highly stigmatized and life-threatening disease. One said, "I'm just torn apart right now because I don't tell my parents yet about my status, and I know it's going to be hard for my mom, so I don't know how to tell her about this thing." Another participant commented, "But I don't know ... how you talk to somebody and they don't know you're positive and you tell them that you're positive, you can just, you can see the change. And it's like it never goes away."
What will they do or say? The second theme that stems from difficulties with disclosure is the ramifications or consequences of telling someone. Many of the participants feared hurting the people to whom they were disclosing. Some participants also feared being hurt by the behavioral or emotional response of the person to whom they disclosed. Several of the participants were also afraid of social and emotional isolation as a result of disclosure. "Maybe they, when they know my situation, they maybe say `I told you so,' " said one participant. Another commented, "People may look at you as someone nice, and once they find out you're positive ... they just hate you."
Meaning of the medication. The following group of responses indicate that, for these participants, the HIV medication often takes on an underlying meaning to them. These underlying meanings can be further broken down into two different themes. In the first theme, the participants appear to view the medication as a lifeline, a necessary evil that keeps them alive.
"It's just a necessary evil basically, taking the medicines and stuff like that. It's something that I'm not happy I have to deal with but it's just, I do what I do to stay healthy and alive, basically," said one. Another observed, "I don't think of my medicine [negatively], I think it is better for me, like vitamins three times a day."
In the second theme, the medication serves only as a reminder of the disease. In this theme the medicine precipitates negative psychological reactions and forces the participants to be confronted with the fact that they are infected with HIV. On participant said, "For the longest time I didn't [believe I had HIV] until I had to start taking medication. And then it was like it all hit the fan because I had it for almost a year and a half but I really, you know, don't mean that I had it until I had to start taking medication, and man, I just broke down and it was horrible." And another commented, "I just made 20 in February. I was thinking, man, I'm only 20 and now I've gotta take medication to keep me alive, and I just freaked out. Oh, just freaked out."
Difficulties with medications. Responses in this subcategory reflect the different types of difficulties the participants have experienced with their medication regimes. Within these responses, several themes appear. Responses in the first theme category indicate that HIV medication can cause difficulties related to disclosure. If people see the participant taking the medication, it may cause questions to be asked that the participant would rather avoid. "For me, when I drink my medicine at my work, you know, maybe the people ask, `When you take medicine, why you take medicine? What is this?' And I can't explain to everybody my situation."
The second theme represents the physical discomfort associated with many of the medications for HIV. This discomfort creates difficulties in social and behavioral functioning that tend to further the participants' dislike for the medication. This dislike can exacerbate issues of non-adherence.
"It's not a fun thing. It's not an easy thing ... you get nauseous, some people lose weight because they just have no appetite, some of these pills I can't eat with, two hours before or after. I got to take these pills three times a day, which don't seem like a lot, but that's six hours out of the day that I cannot eat. And then my other pills I gotta eat with, so then I can't take them together ... I do it, but it ain't easy. I do it for my kids. But you shouldn't have to worry about that at my age."
Another participant confessed, "I just stopped taking it. Some of that shit made me feel horrible, and I, plus, I don't have time for it anyway because I got too much garbage on my mind to be thinking about what time to take a pill."
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