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HIV: Therapeutic Strategies for Guilt, Uncertainty, and Taking ControlHIV: Therapeutic Strategies for Guilt, Uncertainty, and Taking Control

Section 14
Treating HIV Positive Adolescents, Part 1

CEU Question 14 | CEU Test | Table of Contents | HIV/AIDS CEU Courses
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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.

Disclosure
Responses in this category encompassed difficulties that participants had experienced in disclosing their HIV status to other people. Five participants (2 males, 3 females), 63% of the sample, gave responses that referenced disclosure. Two themes that became obvious, yet are distinctly intertwined, are fear of the actual disclosure as well as fear of the ramifications that follow a disclosure to someone.

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."

Medical Adherence
Responses within this category expressed participants' experiences with the numerous types of medication that they take for HIV as well as the difficult medication schedules that they must follow. Seven participants (3 males, 4 females), 88% of the sample, made reference to the difficulties involved in medical adherence. These responses can be broken down more succinctly into two subcategories: what the medications mean to the participant, and practical difficulties with taking the medicines.

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."
Finally, the third theme represents the strenuous and complicated nature of the medical regime, as well as the time commitment that is necessary for strict and successful adherence. "I have to get up in the morning, when I don't have school or anywhere to go, to take medication. Wake up to the medication time, because I need to take medication between 11:00pm and 12:00am, so I've got to wake up."
- Hosek, Sybil, Gary Harper, and Rocco Domanico; Psychological and Social Difficulties of Adolescents Living With HIV: A Qualitative Analysis; Journal of Sex Education & Therapy; 2000; Vol. 25 Issue 4
The article above contains foundational information. Articles below contain optional updates.

Personal Reflection Exercise #7
The preceding section contained information about treating HIV positive adolescents.  Write three case study examples regarding how you might use the content of this section in your practice.

Online Continuing Education QUESTION 14
What are two key questions adolescents with HIV have concerning disclosure? Record the letter of the correct answer the CEU Test

 
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Middle-aged people with HIV and no hepatitis co-infection have a twofold increase in the risk of liver fibrosis
Having HIV almost doubles the risk of liver fibrosis, according to European research published in the online edition of the Journal of Infectious Diseases. Investigators in Denmark and the Netherlands compared rates of liver fibrosis between people living with HIV and people without HIV. Importantly, none of the participants had hepatitis B virus (HBV) or hepatitis C virus (HCV). All were aged between 50 and 70 years and liver fibrosis was present in 12% of people with HIV and 7% of HIV-negative comparison group.
Living with HIV associated with a fivefold increase in the risk of insomnia
People living with HIV are over five times more likely to report insomnia than matched HIV-negative controls, according to research from England and Ireland published in Open Forum Infectious Diseases. Sleeplessness in people with HIV was associated with poorer quality of life and in most cases was undiagnosed and untreated. Overall, 21% of people with HIV had insomnia compared to 5% of the HIV-negative controls. But there was no difference according to HIV status in the prevalence of restless leg syndrome and sleep apnea, two other well recognised sleep disorders. 
Huge fall in new HIV infections after roll-out of PrEP in Scotland
New HIV diagnoses in gay and bisexual men fell by 20% after the implementation of a publicly funded PrEP programme in Scotland, while HIV incidence in a large cohort of men attending sexual health clinics fell by 43%, Professor Claudia Estcourt of Glasgow Caledonian University and colleagues report in AIDS.
Bacterial STI rates rose in the year before starting PrEP, but not during PrEP, Australian study finds
A study of gay and bisexual male participants in the first large implementation study of HIV pre-exposure prophylaxis (PrEP) in Australia has found that although rates of bacterial sexually transmitted infections (STIs) were high, they did not increase in the two years after starting PrEP. In contrast, they increased significantly in the year before men started PrEP.
CD4 count below 350 increases the risk of severe COVID-19
People with HIV with CD4 counts below 350 were almost three times more likely to experience severe COVID-19 symptoms than people with higher CD4 counts, confirming warnings by the British HIV Association and the European AIDS Clinical Society that immunosuppressed people with HIV are likely to be at higher risk of serious illness.

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