De Civita and Dobkin’s (2004) triadic partnership model better captures this aspect of pediatric adherence . This model conceives of adherence as resulting from transactions between the child, the caregiver(s), and the medical team, that are in turn influenced by development and contextual characteristics and by changes in disease course. A simplified depiction of the model is presented in Fig. 1.2. We will return to this conceptualization at the end of this book. For now, though, we wish to stress that this model will guide much of how we present our “snapshot from the field” of pediatric adherence. We will focus on transactions between the child, parents, and healthcare providers when discussing barriers and facilitators of adherence (Chap. 3), effective interventions (Chap. 4), developmental effects (e.g., adherence in adolescence; Chaps. 5 and 6), and vulnerable populations and health disparities (Chaps. 8 and 9).
In our view, the triadic partnership can be conceived of as a distinct microsystem within Bronfenbrenner’s (1979) ecological systems theory that interacts with other microsystems (e.g., the healthcare system, school) within the broader society and culture.
Larger Societal Issues also Affect Adherence
Finally, it is important to recognize the disproportionate burden and impact of chronic illness on minorities and impoverished families. Children from poor and minority families are much more likely to have a chronic illness such as asthma or type 2 diabetes, are less likely to have the resources and access to quality care necessary to manage the illness effectively, and tend to have substantially worse adherence and illness control (Adler et al. 1994). It is quite possible that some of the lack of progress in reducing rates of nonadherence reflects these larger societal issues of poverty and racial/ethnic disenfranchisement. These are complex issues that are discussed in detail in Chaps. 8 and 9, but we do wish to suggest here that we do believe there may be feasible ways to promote better adherence even in these most vulnerable populations.
Summary
The complexities surrounding adherence and nonadherence can make the problem feel unwieldy. Of course, things become more manageable when viewed from the perspective of helping the individual patient struggling with adherence, for whom there are effective interventions . Even so, nonadherence can be a very frustrating problem for healthcare professionals.
One challenge is that the multi-factorial nature of nonadherence makes it something like the hydra of Greek myth—once you cut off one head, two more spring up in its place. A potential solution to this dilemma is to develop systems-wide approaches that can address multiple aspects of adherence . For example, to help a teenager severely struggling with adherence to his diabetes regimen may require: working with his endocrinologist to improve communication and reduce “shame and blame” tactics that make the youth very reticent to attend clinic appointments (Wolpert and Anderson 2001); providing family therapy focused on reducing parent-child conflict over diabetes management; using electronic reminders over his cell phone as a non-intrusive way to prompt blood glucose checks; and helping the family reinstate their insurance so they can afford his insulin.
A second major challenge is that adherence problems lie on a continuum from small to large—yet even small problems can have big effects at the population level. The interventions reviewed in Chap. 4 have been designed to be implemented primarily by health psychologists, and other providers with behavioral health training such as clinical social workers. These interventions are mostly geared toward patients with more intractable adherence problems or comorbid psychosocial difficulties—i.e., the patients with the highest level of risk and need, who often require the most care and resources from their healthcare providers (Anderson 2012).
However, the bulk of patients who have some difficulty with regimen adherence may not need to see a psychologist, but might instead see sufficient benefit if their primary medical providers were better able to assess and promote adherence. Indeed, most of the calls for improving adherence focus primarily on the role of medical providers. It is actually an open empirical question whether the problem of nonadherence can be effectively addressed without more wide-scale use of specialty care provided by health psychologists, an issue that will be taken up again in Chap. 11. For now, though, it is clear that in most cases promoting adherence falls to patients’ medical providers. Unfortunately, the realities of contemporary healthcare make it quite challenging for clinicians to address adherence issues in routine follow-up care, although this may change as the current healthcare system continues to evolve (Kocher et al. 2010; Koh and Sebelius 2010).
To address these two main issues—the multifactorial nature of nonadherence and its dimensional nature—we provide at the end of this book a comprehensive model for risk assessment, triage , and referral of patients struggling with adherence or at risk for nonadherence; and link this system to a tiered intervention model based on a preventive health model developed for pediatric patients (Kazak 2006).
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