Adherence to Antiretroviral Therapy among Older Children and Adolescents with HIV: A Qualitative Study of Psychosocial Contexts

Lehman College and the Graduate Center, the City University of New York, Bronx, New York 10468-1589, USA.
AIDS patient care and STDs (Impact Factor: 3.5). 01/2009; 22(12):977-87. DOI: 10.1089/apc.2008.0048
Source: PubMed


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.

18 Reads
  • Source
    • "Evidence suggests that this phenomenon occurs throughout all developmental stages in children, adolescents , adults, and their caregivers (Merzel et al., 2008; Van Dyk, 2010; Miramontes, 2001). "
    [Show abstract] [Hide abstract]
    ABSTRACT: Clinical observations have linked antiretroviral nonadherence to treatment regimen fatigue in persons living with HIV (PLWH). Although nonadherence appears to be a consequence of treatment regimen fatigue, little is known about the onset, course, and duration of this construct. Our study developed and evaluated psychometric properties of a measure of treatment regimen fatigue for PLWH. Based on a recent review, the concept was hypothesized to reflect decreased motivation, treatment cynicism, and low self-efficacy to adhere to treatment. Items comprising these factors were generated based on measures of similar constructs in the literature. Exploratory factor analyses suggested that a two-factor solution best fit the data and accounted for 35.8% of the variance. Our study supported a two-factor model of treatment regimen fatigue consisting of Treatment Cynicism and Self-Efficacy. The scale provides a new tool to assess treatment regimen fatigue in PLWH and can be used to inform and improve treatment of HIV. Copyright © 2015 Association of Nurses in AIDS Care. Published by Elsevier Inc. All rights reserved.
    Full-text · Article · Jul 2015 · Journal of the Association of Nurses in AIDS Care
  • Source
    • "Antiretroviral treatment (ART) has led to a fivefold decrease in mortality rates among HIV-infected children in high-income countries (Havens & Gibb, 2007) where " increasingly, older children are becoming the face of the pediatric HIV epidemic and many perinatally-infected children have reached adolescence " (Merzel, Vandevanter, & Irvine, 2008). This transformation is currently under way in sub-Saharan Africa where ever more children and adolescents are enrolled in HIV treatment. "
    [Show abstract] [Hide abstract]
    ABSTRACT: Antiretroviral treatment (ART) enables ever more HIV-positive children in sub-Saharan Africa to grow into adulthood. While policy documents recommend that children be fully informed about their health status and actively participate in treatment related decision-making, the implementation of such recommendations is often confined by organizational shortcomings and counterproductive power dynamics within medical institutions. By briefly outlining children’s enrolment in HIV treatment in a highly frequented treatment center in northeastern Tanzania, in this article I demonstrate the complexity of HIV disclosure to children and the limitations of their participation in practice. I then turn to the subjective experiences of 13 children and adolescents (9-19 years) living with antiretroviral medicines. The study revealed that especially the younger among them had to maneuver a field of ‘informational inconsistency’ produced by different actors’ contradicting strategies of disclosure and concealment. Furthermore, children and youths constantly had to reconcile a gap between maintaining their sense of ‘normalcy’ and contrastingly experienced debilitating drug side-effects, social discrimination, and – as far as the adolescents were concerned – uncertainties in relation to sexual relationships. Based on this ethnographic material, the article concludes with several suggestions how to improve the provision of medical services and socio-moral support for HIV-positive children and adolescents.
    Full-text · Article · Oct 2014 · Children and Youth Services Review
  • Source
    • "e nuisance of having to take a multiplicity of doses and a high pill burden " ; " loss of desire to take medication over time due to high pill burden " Saitoh et al . ( 2008 ) " patients who were unable to take antiretroviral medications because of pill burden and / or nonadherence " Regimen fatigue Marhefka et al . ( 2006 ) No definition provided Merzel et al . ( 2008 ) No definition provided Treatment fatigue Arem et al . ( 2011 ) " patients tiring of continually taking ART " Bagenda et al . ( 2011 ) No definition provided Di Mascio et al . ( 2003 ) No definition provided Fox et al . ( 2010 ) No definition provided McMahon et al . ( 2001 ) No definition provided Miramontes ( 2001 ) " treatment fatigu"
    [Show abstract] [Hide abstract]
    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.
    Full-text · Article · Aug 2014 · Psychology Health and Medicine
Show more