© Springer International Publishing Switzerland 2015
David D. Schwartz and Marni E. AxelradHealthcare Partnerships for Pediatric AdherenceSpringerBriefs in Public Health10.1007/978-3-319-13668-4_1414. Pulling it All Together: Clinical Conclusions
(1)
Associate Professor of Pediatrics Department of Pediatrics Section of Psychology, Baylor College of Medicine, Houston, Texas, USA
Abstract
In this final chapter, we summarize the ten most important take-home points from this volume on pediatric adherence in the context of the following main ideas. (1) Successful adherence depends on developing healthcare partnerships between patients, families, and providers, and that nonadherence often results from the breakdown of teamwork between any (or all) of the partners. (2) A focus on self-management instead of teamwork is likely to be self-defeating. Promoting patient independence too early risks a dangerous decline in illness management and control. In contrast, supporting patient autonomy (i.e., volitional behavior) can foster development without having to withdraw whatever assistance the youth may need. (3) Communication is the key to developing successful partnerships, which will usually be characterized by having shared goals and (ideally) a shared model of illness. We end this chapter—and the book—by highlighting the added value of partnerships for reducing the management burden chronic illness places on children.
Many articles and books have been dedicated to the investigation and improvement of patient adherence, yet suboptimal adherence remains a significant impediment to optimal levels of disease and illness control. This probably should not be surprising. There is often is little immediate benefit to expending all of the effort that goes into adherence. Moreover, it is not always clear that adherence even produces good results. For example, in a study of children with asthma, Kuehni and Frey (2002) found no differences in adherence between children with good and poor asthma control. Results of the meta-analysis by Graves et al. (2010) were reassuring in showing that improving adherence does in general result in better health outcomes, but even substantial improvements in public health do not always translate into improved quality of life for the individual.
Motivation for adherence may be improved by taking the onus off the individual patient and instead viewing adherence from the perspective of family management. Parents are often more motivated to ensure the long-term health of their children than their children are, and they are better able to take the long view. Seeing adherence as a family matter also takes some of the burden off the youth with a chronic illness —and that includes the burden of guilt and shame for poor disease control (often attributed by self and others to “doing a bad job”), as well as the substantial practical burdens of management. Wysocki (1997) suggested viewing problematic adherence as reflecting the breakdown of teamwork around illness management, and we believe the value of this view cannot be overstated.
The evidence reviewed in this volume leads to some very clear and strong conclusions in this regard. First, neither children nor adolescents can manage an illness on their own. Chronic illnesses are complex, heavy burdens that require planning, organization, foresight, and self-control, all qualities that are not yet very well developed in children or teens. Recent findings from developmental neurobiology strongly support the idea of a maturity gap in adolescence, between well-developed reasoning skills but poor ability to use those skills, especially in social situations and in the “heat of the moment.” The evidence also points to over-reactivity in the social-emotional reward system, with a concurrent increase in (often risky) reward-seeking behavior that the cognitive control system is not yet able to regulate effectively. The preference for immediate reward over delayed rewards (or consequences) is exactly contrary to the perspective necessary to promote good adherence. Yet this preference is absolutely normative in teens.
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