Integrating Adherence to Highly Active Antiretroviral Therapy Into Children's Daily Lives: A Qualitative Study

Abstract

ABSTRACT.Objective. To acquire a deeper understanding of factors that influence adherence to highly active antiretroviral therapy (HAART) in a pediatric population.Methods. We performed a qualitative study of adherence in children who receive HAART in a Belgian pediatric acquired immune deficiency syndrome referral center. Eleven primary caregivers were interviewed to assess their child's adherence and influencing factors. The interview guidelines were developed on the basis of an extensive literature review. Adherence to treatment was assessed using caregivers' self-report and laboratory results. Content analysis for common items was performed, and statements of adherent and less-adherent patients were compared.Results. Three main factors influenced adherence. Adherent patients were found to internalize the medical information to a stronger extent than less-adherent patients. Adherent patients showed stronger motivation to stick to the medical regimen on the basis of personal cost-benefit analyses, ie, perceived benefits outweighed the costs or difficulties experienced. Adherent patients developed greater problem-solving capacities, ie, ways to deal with practical complications of medication intake. The interviews revealed a fourth, more dynamic component: knowledge, motivation, and capacities evolved in a progressive way, related to individual stages of coping with human immunodeficiency virus (HIV).Conclusions. The data suggest that coping with HIV and the process of establishing good adherence may be interrelated. Caregivers who accept the disease may be more likely to internalize the received information and thus develop a stronger motivation to fight for the child's life. Problem-solving skills sustain this adherence, and medication becomes a priority in the adherent caregivers' daily lives. On the contrary, less-adherent caregivers may be situated at less advanced stages of the coping process. Thus, tailor-made approaches adapted to the individual HIV-related coping strategies need to be developed to improve adherence in children and caregivers. T he introduction of antiretroviral therapy has turned human immunodeficiency virus (HIV) into a chronic, noncurable disease. Highly active antiretroviral therapy (HAART) causes viral suppression and favors immunologic reconstitution, which decreases opportunistic infections, the development of acquired immune deficiency syndrome (AIDS), and mortality. [1][2][3] Nevertheless, achieving and sustaining the required high level of adherence to a treatment regimen to control the disease remains a challenge. Dracup and Melais 4 defined adherence as "the extent to which an individual chooses behaviors that coincide with a clinical prescription achieved through negotiation between the health professional and the patient." In the case of HAART, this suggests introducing multiple, strictly timed doses of several drugs, some with a bad taste, into daily life. Moreover, adherence of Ͼ95% seems necessary to achieve viral suppression and to avoid development of viral resistance...

Family Experiences with Pediatric Antiretroviral Therapy: Responsibilities, Barriers, and Strategies for Remembering Medications

“…It is uncommon for families to disclose a child's HIV status to most people outside of the immediate family; thus, even when families have effective strategies for remembering doses, children may miss doses due to concerns that others will inadvertently learn about the child's HIV status. 28,53 Yet stigma does not explain the lack of relationship between memory strategies and adherence in this study, given that only 2% of caregivers reported that nonprivacy was a barrier.…”

Adherence to Antiretroviral Therapy for Pediatric HIV Infection: A Qualitative Systematic Review With Recommendations for Research and Clinical Management

“…Hammami et al, 49 however, presented findings that confirmed the information-motivation-behavioral skills model. 50 Specifically, in their qualitative study of 11 caregivers of HIV-positive children in Belgium, adherence was associated with (1) knowledge of the disease and its treatment; (2) motivation or willingness to adhere (which depended on the acceptance of the HIV diagnosis, the emotional quality of the mother-child relationship, and the recognition of future prospects); and (3) the capacity or ability to adhere (which depended on having the necessary cognitive and technical skills to follow a medication scheme, perceived self-efficacy, and problemsolving capacity).…”

Factors influencing adherence to anti-retroviral treatment in children with human immunodeficiency virus in South India – a qualitative study

“…This technique does not use pre-set questions, but is shaped by a defined set of topics. The topics (Table 1) were informed by a literature review of published studies relevant to factors influencing adherence in children (Bikaako-Kajura et al, 2006;Boni et al, 2000;Elise et al, 2005;Giacomet et al, 2003;Gibb et al, 2003;Goode et al, 2003;Hammami et al, 2004;Marhefka et al, 2006;Martin et al, 2007;Mellins et al, 2004;Nicholson et al, 2006;Pontali et al, 2001;Reddington et al, 2000;Temple et al, 2001;Williams et al 2006). All interviews were conducted by the principal investigator who had no role in the clinical care provided at the organisation.…”

“…Sustaining good adherence to ART in children is difficult as it is influenced by several factors including child behaviour, tolerability of medications, access to health services, HIV status of caregivers and their attitudes and beliefs (Bikaako-Kajura et al, 2006;Boni, Pontali, De Gol, Pedemonte & Bassetti, 2000;Elise et al, 2005;Giacomet et al, 2003;Gibb et al, 2003;Goode, McMaugh, Crisp, Wales & Ziegler, 2003;Hammami et al, 2004;Marhefka, Tepper, Brown, & Farley, 2006;Martin et al, 2007;Mellins, Brackis-Cott, Dolezal & Abrams, 2004;Nicholson et al, 2006;Pontali et al, 2001;Reddington et al, 2000;Temple, Koranyi, & Nahata, 2001;Williams et al 2006). Nonadherence leading to anti-viral resistance necessitates the use of more expensive and often more toxic second or third line drugs with disastrous implications at both individual and population levels (Mullen et al, 2002).…”