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

HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute and Columbia University of the City of New York, New York, New York, USA.
AIDS patient care and STDs (Impact Factor: 3.5). 08/2008; 22(8):637-47. DOI: 10.1089/apc.2007.0110
Source: PubMed


This study examines the relationship between adherence to pediatric HIV regimens and three family experience factors: (1) regimen responsibility; (2) barriers to adherence; and (3) strategies for remembering to give medications. Caregivers of 127 children ages 2-15 years in the PACTS-HOPE multisite study were interviewed. Seventy-six percent of caregivers reported that their children were adherent (taking > or = 90% of prescribed doses within the prior 6 months). Most caregivers reported taking primary responsibility for medication-related activities (72%-95% across activities); caregivers with primary responsibility for calling to obtain refills (95%) were more likely to have adherent children. More than half of caregivers reported experiencing one or more adherence barriers (59%). Caregivers who reported more barriers were also more likely to report having non-adherent children. Individual barriers associated with nonadherence included forgetting, changes in routine, being too busy, and child refusal. Most reported using one or more memory strategies (86%). Strategy use was not associated with adherence. Using more strategies was associated with a greater likelihood of reporting that forgetting was a barrier. For some families with adherence-related organizational or motivational difficulties, using numerous memory strategies may be insufficient for mastering adherence. More intensive interventions, such as home-based nurse-administered dosing, may be necessary.

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    • "of questionnaires, once daily treatment regimens, hospitalization, daily observed therapy (DOT) and the application of patient-friendly drugs. In addition, transfer of ultimate responsibility for medication intake from child to caregiver increased treatment compliance (Glikman, Walsh, Valkenburg, Mangat, & Marcinak, 2007; Marhefka et al., 2008; Murphy et al., 2010; Parsons et al., 2006; Purdy et al., 2008). Some new methods, like 'CLICK, an adherent program that is based on Social Cognitive Theory and Brief Motivational Enhancement Therapy, are designed to motivate adherence, to raise awareness about HIV, cART medicines, and to provide awareness of adherence barriers and skills to overcome them (Shegog, Markham, Leonard, Bui, & Paul, 2012). "
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    • "Barriers to adherence may be real or perceived and are specific to the individual; many patients struggle with more than one barrier [4] [9]. Various studies have examined the relation between barriers and adherence to medical treatments, and have found that children experiencing a greater number of barriers are more likely to exhibit poorer rates of adherence [11] [12] [13] [14]. "
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    • "Taking medication as prescribed is crucial because the level of HIV virus increases and immune system functioning decreases when strict adherence to the treatment regimen does not occur (Garvie et al.; Vijayan et al.). Adherence to medication regimens is frequently suboptimal for children and adolescents, and consistent with those observed for the adult population (Marhefka et al., 2008; Naar- King et al., 2006; Steele et al., 2007). In a study conducted by Veinot et al (2006), adolescents reported four themes regarding perceptions of and experiences with antiretroviral treatment: treatment knowledge (confusion and skepticism), treatment decision making (lack of choice and feeling emotionally unprepared), difficulties taking medications (social routine disruption, feeling " different, " and side effects), and inconsistent treatment adherence and treatment interruptions. "
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