Protease inhibitor therapy and aggressive multidrug regimens have increased the likelihood that children perinatally infected with HIV will survive into adolescence and young adulthood. Improved understanding of the pathogenesis of HIV and viral activity has suggested that medication adherence must be nearly perfect to minimize viral load and prevent drug resistance (Paterson et al., 1999
). Unfortunately, treatment for HIV presents special challenges for adherence. Antiretroviral (ART) medications often involve demanding dosing schedules and have significant adverse effects. Because pediatric HIV most often affects disadvantaged families through maternal–child transmission, illness management may be affected by family and caregiver issues such as parental illness and stress, substance abuse, lack of adequate support networks, loss and change of caregivers, and poor access to healthcare resources. Additional adherence challenges related to HIV infection include potential cognitive and learning limitations and the stigma of the disease.
Studies of youth with other pediatric chronic medical conditions suggest adherence to treatment regimens deteriorates in adolescence (Drotar & Ievers, 1994
), and medication adherence in pediatric HIV has been found to decline as children grow older (Mellins, Brackis-Cott, Dolezal, & Abrams, 2004
; Williams et al., 2006
). Parents tend to decrease their involvement and supervision of their children's daily activities as they move into adolescence (Laird, Pettit, Bates, & Dodge, 2003
; Wysocki et al., 1996
). While this facilitates the process of adolescent separation and individuation necessary for transition to adulthood, multiple studies have shown that low levels of parental involvement in illness management result in poorer management and health outcomes among youth with chronic illness (Allen, Tennen, McGrade, Affleck, & Ratzan, 1983
; Boland, Grey, & Mezger, 1999
; Ellis et al., 2007
; LaGreca & Schuman, 1995
Transitions in responsibility for illness management from parent to adolescent are ultimately necessary for appropriate self-management to become established when the adolescent becomes a young adult. These transitions, however, also allow possible ambiguity about family members’ responsibilities for completion of illness-management tasks. In a study demonstrating the potential for disagreement during the adolescent developmental period, Dashiff (2003
) examined perceptions of responsibility for diabetes management tasks. Mothers and adolescents agreed the adolescent was primarily responsible for diabetes care tasks, but fathers believed mothers to be primarily responsible. Such ambiguity can create problematic adherence behavior and health outcomes. Agreement between maternal and adolescent perceptions of the allocation of responsibility for diabetes management tasks significantly predicted better metabolic control within a sample of middle-class White adolescents (Anderson, Auslander, Jung, Miller, & Santiago, 1990
Walders and colleagues (2000
) assessed disagreement between adolescents and their caregivers regarding the allocation of responsibility for illness-management tasks in a sample of inner-city African-American adolescents with chronic asthma. Parental overestimation was defined as tasks for which the parent maintained the adolescent took responsibility, but the adolescent reported he or she did not. Parental overestimation of adolescent responsibility was found to be related to decreased adherence to asthma treatment. One study (Naar-King, Ellis, Idalski, Frey, & Cunningham, 2007
) found that an intervention that improved adherence and health outcomes for adolescents with type 1 diabetes also reduced parental overestimation of adolescent responsibility in an urban sample. Wysocki et al. (1996
) found that high child responsibility for management of type I diabetes was related to poorer health outcomes.
The research literature on allocation of responsibility for management of pediatric HIV is limited. Only two studies to date have addressed the issue of delineation of responsibility for illness management in this population. Mellins et al. (2004
) found a trend for greater child responsibility for medications to be related to poorer adherence, while increased parental involvement was associated with improved adherence. However, the study did not include adolescents older than 13 years, and responsibility was measured with a single likert-type item. Martin et al. (2007
) assessed responsibility with a nine-item scale adapted from responsibility scales used in the studies of asthma and diabetes described earlier. They found that children perceived themselves to have more responsibility than caregivers described, and this discrepancy was associated with nonadherence. However, the relatively small sample of 24 families was not representative of the families typically receiving health care in urban HIV clinics. As noted earlier, studies of other pediatric chronic conditions in urban settings show the opposite pattern, that parents rate their children as more responsible than children report themselves to be (Walders et al., 2000
The current study is the first large multisite study of allocation of responsibility in the management of pediatric HIV. This report provides descriptive data on allocation of responsibility in older children and adolescents (heretofore referred to as youth) with perinatally acquired HIV in 36 urban clinics. We hypothesized that parent and youth report of increased child responsibility would be associated with parent and youth report of lower levels of adherence to anti-HIV medications.