Adherence to antiretroviral therapy among older children and adolescents with HIV: a qualitative study of psychosocial contexts.
ABSTRACT Abstract Survival among perinatally infected children and youth with HIV has been greatly extended since the advent of highly active antiretroviral therapies. Yet, adherence to HIV medication regimens is suboptimal and decreases as children reach adolescence. This paper reports on a qualitative study examining psychosocial factors associated with adherence among perinatally infected youth ages 10-16 years. The study was based on in-depth interviews with a sample of 30 caregivers participating in a comprehensive health care program in New York City serving families with HIV. A subsample comprising 14 caregivers of children ages 10 and above is the focus of this paper. The analysis identified a number of themes associated with the psychosocial context of managing adherence among older children. Maintaining adherence was an ongoing challenge and strategies evolved as children matured. Regimen fatigue and resistance to taking the medications were major challenges to maintaining adherence among the oldest children. In other cases, caregivers developed a kind of partnership with their child for administering the medications. Disclosure to the child of his or her HIV status was used as a strategy to promote adherence but seemed to be effective only under certain circumstances. Social support appeared to have an indirect influence on adherence, primarily by providing caregivers with temporary help when needed. Health care professionals were an important source of disclosure and adherence support for parents. The study illustrates the interplay of maturational issues with other contextual psychosocial factors as influences on adherence among older children and adolescents.
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ABSTRACT: Introduction: Knowledge of antiretroviral therapy (ART) among children with HIV depends on open communication with them about their health and medicines. Guidelines assign responsibility for communication to children's home caregivers. Other research suggests that communication is poor and knowledge about ART is low among children on treatment in low-income countries. This study sought to describe communication about medicine for HIV in quantitative terms from the perspectives of both children and caregivers. Thereafter, it established the factors associated with this communication and with children's knowledge about their HIV medicines.Methods: We undertook a cross-sectional survey of a random sample of 394 children with HIV on treatment and their caregivers at nine health facilities in Jinja District, Uganda. We assessed reported frequency and content of communication regarding their medicines as well as knowledge of what the medicines were for. Logistic regression analysis was used to determine the factors associated with communication patterns and children's knowledge of HIV medicines.Results: Although 79.6% of the caregivers reported that they explained to the children about the medicines, only half (50.8%) of the children said they knew that they were taking medicines for HIV. Older children aged 15-17 years were less likely to communicate with a caregiver about the HIV medicines in the preceding month (OR 0.5, 95% CI 0.3-0.7, p=0.002). Children aged 11-14 years (OR 6.1, 95% CI 2.8-13.7, p<0.001) and 15-17 years (OR 12.6, 95% CI 4.6-34.3, p<0.001) were more likely to know they were taking medicines for HIV compared to the younger ones. The least common reported topic of discussion between children and caregivers was "what the medicines are for" while "the time to take medicines" was by far the most mentioned by children.Conclusions: Communication about, and knowledge of, HIV medicines among children with HIV is low. Young age (less than 15 years) was associated with more frequent communication. Caregivers should be supported to communicate diagnosis and treatment to children with HIV. Age-sensitive guidelines about the nature and content of communication should be developed.Journal of the International AIDS Society 07/2014; 17(1):19012. · 4.21 Impact Factor
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ABSTRACT: HIV treatment requires lifelong adherence to medication regimens that comprise inconvenient scheduling, adverse side effects, and lifestyle changes. Antiretroviral adherence and treatment fatigue have been inextricably linked. Adherence in HIV-infected populations has been well investigated; however, little is known about treatment fatigue. This review examines the current state of the literature on treatment fatigue among HIV populations and provides an overview of its etiology and potential consequences. Standard systematic research methods were used to gather published papers on treatment fatigue and HIV. Five databases were searched using PRISMA criteria. Of 1557 studies identified, 21 met the following inclusion criteria: (a) study participants were HIV-infected; (b) participants were prescribed antiretroviral medication; (c) the article referenced treatment fatigue; (d) the article was published in a peer-reviewed journal; and (e) text was available in English. Only seven articles operationally defined treatment fatigue, with three themes emerging throughout the definitions: (1) pill burden; (2) loss of desire to adhere to the regimen; and (3) nonadherence to regimens as a consequence of treatment fatigue. Based on these studies, treatment fatigue may be defined as "decreased desire and motivation to maintain vigilance in adhering to a treatment regimen among patients prescribed long-term protocols." The cause and course of treatment fatigue appear to vary by developmental stage. To date, only structured treatment interruptions have been examined as an intervention to reduce treatment fatigue in children and adults. No behavioral interventions have been developed to reduce treatment fatigue. Further, only qualitative studies have examined treatment fatigue conceptually. Studies designed to systematically assess treatment fatigue are needed. Increased understanding of the course and duration of treatment fatigue is expected to improve adherence interventions, thereby improving clinical outcomes for individuals living with HIV.Psychology Health and Medicine 08/2014; 20(3):1-11. · 1.53 Impact Factor
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ABSTRACT: Quantifying pediatric immunologic recovery by highly active antiretroviral therapy (HAART) initiation at different CD4 percentage (CD4%) and age thresholds may inform decisions about timing of treatment initiation.Pediatrics 09/2014; · 5.30 Impact Factor