This paper examined family experiences with pediatric ART regimens among participants enrolled in the PACTS-HOPE study, focusing on responsibility for medication-related activities, barriers, and strategies for remembering medication administration. Caregivers who reported taking primary responsibility for calling to refill ART prescriptions (versus giving the responsibility to or sharing the responsibility with the child) were more likely to have adherent children. This finding differs from that of a previous study,11
which found no relationship between adherence and the sum of scores for nine responsibility items. Ours is an important finding, because it suggests that to achieve adherence caregivers may need to retain responsibility for some regimen tasks, although they may be able to share or allocate responsibility for other tasks without compromising adherence. Adherence may improve if clinicians help caregivers and children identify which tasks can be safely allocated to the child and which tasks are better left to caregivers. However, some caution is warranted in interpreting this finding, as only six caregivers in the study reported sharing responsibility with the child for making refill requests.
Confirming our hypotheses as well as a previous finding in the pediatric ART literature,11
children who shared responsibility with their caregivers were older than children who did not share responsibility for each of five regimen tasks. Caregivers often allow children to assume increasing responsibility for medication adherence as they become older and show signs of maturity,8–11
which for some may be an appropriate means of preparing children for self-care during adulthood. Children and adolescents may appreciate the opportunity to control whether or not and when they get their medications, leaving them with less anger and greater regimen-specific self-efficacy,52
while caregivers may be relieved to relinquish medication responsibilities.53
Unfortunately, across chronic conditions, data consistently show that for many, adolescence—the time when caregivers are most likely to grant their children greater responsibility—is a time of poor adherence to medical regimens.15–18
Thus, it may be important for clinicians to offer caregivers anticipatory guidance that stresses the importance of supervising and monitoring their child's completion of regimen-related tasks,11,54
even when they allocate primary responsibility for medication-taking to their child or adolescent.
Older age was not significantly associated with nonadherence in this study. Other studies in the pediatric HIV literature have failed to find a direct relationship between age and adherence30,32,33,55,56
or have found that caregiver reports of adherence increase with child age.26
Like the present study, most such studies have included primarily children under age 13 years30,32,55,56
at least partially excluding adolescents, who may have the greatest difficulty adhering. Therefore, the failure to find an age effect may be due to truncation of the sample. Moreover, the relationship between age and adherence is likely mediated by other factors, including regimen responsibility, in which case identifying and changing those mediators may be the most pertinent objectives.
Consistent with findings of two previous studies, caregivers who reported fewer barriers to adherence were more likely to have adherent children.29,30
Several individual barriers were significantly associated with nonadherence, including three barriers that may reflect disorganization (forgot, busy with other things, and change in daily routine), and one barrier associated with parent–child dynamics (child refused). As they are the most commonly reported barriers in this sample, determining whether or not families experience these barriers may be particularly important for identifying adherence problems and creating a dialogue with families about their medication-related experiences.
Once adherence problems are identified, providers may recommend commonly used strategies for remembering medication. Our findings suggest that this approach may not always be effective. Neither using more memory strategies overall nor using at least one (versus no) cue-based strategy was significantly associated with adherence. Although strategies such as tying medication-taking into daily routines and using reminder devices may assist some families with adherence, using such strategies is insufficient for some families to achieve adherence.15,40,41,57
In fact, our results show that caregivers who used more strategies (versus less) for remembering medications were more likely to report a problem with forgetting doses. Similarly, Kalichman and colleagues58
found that some adults on ART who used pill boxes also used other memory strategies and were more likely than non-pillbox users to report missing medications due to forgetting. It seems unlikely that using memory strategies contributes to problems of forgetting; rather, the problem of forgetting may trigger the use of multiple strategies to address adherence problems. Families who miss doses due to forgetting may try multiple strategies for remembering medication dose times.
Families who struggle with forgetting, multiple demands, or changes in their routine may have difficulties with organization in general. A beeper or other reminder device is only helpful if, upon receiving the reminder, the child takes the medication. The reminder device will be ineffective if the reminder is given but the child does not get the medicine. For example, a child may not get the medicine after a reminder due to a supply problem (e.g., they ran out of medication) or a proximity problem (e.g., they did not take the reminder device or the medication along when they left the house). Families who experience such situations may benefit from assistance in organizing their lives so that they have a dose of medication available at all times. In the case of proximity problems, families may also benefit from learning how to set their reminder devices to alert them later, when they are likely to be at home.
Stigma—anticipated or experienced— is a potential barrier to the success of memory strategies for promoting adherence. 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.
Untested in this study is the hypothesis that motivational barriers may keep some children from receiving the medication in response to a reminder. The child or caregiver might turn off a medication alarm with some vague intention of taking or administering the medication in the ensuing minutes or hours, and then “forget” to take or give the medication.28
“Forgetting” may be a proxy for psychological processes such as avoidance and denial.59
and posttraumatic stress related to the HIV diagnosis,61
other mental health problems,56
and limited adherence-specific or global social support56
may fuel this avoidance or otherwise make dose administration difficult if not impossible. Surely most caregivers want to their child to get this critical medication, although some caregivers may avoid dosing either: (1) because the medication reminds them of HIV—a life-threatening, stigmatized chronic illness that burdens their family, and in some cases, which they passed to their child53
; (2) out of compassion for their child's reluctance to take the medicine53
or (3) to avoid stressful caregiver–child conflicts around medication-taking.28,53
Studies have examined attitudes and beliefs related to ART medication62–64
(see Fisher et al.65
for a brief review), but these psychological barriers to adherence have not been well explored.
Research is needed to determine families' goals or behavioral intentions for medication-taking and how they relate to adherence.66
Although health care providers often have near-perfect adherence as a goal, some families may be content with the child getting their medication most of the time as long as their child appears healthy. Bauman67
distinguishes between types of nonadherers: volitional and inadvertent. Volitional non-adherers consciously choose to not follow a regimen. Inadvertent nonadherers make a decision to follow a medical regimen but fail to do so; they may fall into one of three subtypes: (1) those who are nonadherent because they misunderstand the regimen; (2) those who want to adhere but face barriers; and (3) those who miss doses at times, but feel they are adhering sufficiently. In a study of young women with HIV, Kalichman and colleagues68
found that intentions to adhere were significantly associated with adherence; similar work is needed to better understand the role of intentions in adherence to pediatric regimens. Such research should attempt to reduce social desirability bias, because women may be concerned about the consequences of reporting socially undesirable intentions for adhering to their child's regimen.69
This study has multiple strengths, including a large sample relative to most studies in the literature.70
Data were drawn from seven pediatric HIV clinics in four U.S. cities; thus, these findings are likely generalizable to a large portion of children living with HIV in the United States. Moreover, this study is unique in its examination of three family experience factors as they relate to adherence. Several limitations must be noted as well. First, conclusions about causality are limited due to the cross-sectional design. Additionally, this study used a single caregiver self-report question to assess adherence over a 6-month period. Although the association between this measure and virologic outcomes supports its validity, replication of this finding is important, and findings will be enhanced when multiple measures are used.71
For example, incorporating child as well as caregiver reports may provide a fuller, if more complex, picture of adherence. More objective assessment tools such as electronic monitoring devices, while expensive and imperfect, can provide useful triangulation of data, as well.25
Both the present study and a previous study11
adapted a measure originally used to assess responsibility for diabetes regimen tasks,50
which asks caregivers whether the child, caregiver, or both are primarily responsible for regimen tasks. The current study found limited variability in responses to most items, suggesting that a different response set may improve the measure. A similar measure to assess responsibility for asthma management has the respondent rate each task on a 5-point Likert-type scale ranging from 1 (parent is completely responsible) to 5 (child is completely responsible),12
although only limited support was found for the relationship between that measure and children's adherence.12,72
Another option would have respondents report how frequently over a set period of time a caregiver (versus child) actually completed each task. For some regimen tasks it may be valuable to reframe the construct from responsibility to supervision and monitoring.54
Presumably, the child is typically the one who puts the medication in his/her mouth, so the important question may be whether or not a caregiver was present and watched it occur.73
With either modification, efforts to limit response biases due to social desirability will be critical to the future success of this measure.
In conclusion, this multisite study of children's adherence to ART highlights the importance of caregivers taking responsibility for the medication supply and demonstrates the utility of barrier assessments for identifying suboptimal adherence. This study also suggests that for some families, using strategies for remembering medication may be insufficient to address problems with forgetting doses, although this finding warrants replication with a longitudinal, experimental design that can clarify the causal direction of these preliminary findings. Clinicians and researchers working with families may want to investigate how motivating factors account for adherence problems, and how established techniques, such as cognitive-behavioral and motivational interviewing may be useful in addressing these issues. Although some adherence-promoting interventions have been tested among children and youth, their effectiveness has been limited, at best, and their effects on adherence motivations have not been well studied.41,70–73
For some struggling families, home-based nurse-administered dosing may be the only viable strategy for ensuring adherence74
while we await future studies to identify promising alternative intervention strategies.