Self-management of chronic pediatric conditions is a formidable challenge for patients, families, and clinicians, with research demonstrating a high prevalence of poor self-management and nonadherence across pediatric conditions. Nevertheless, effective self-management is necessary to maximize treatment efficacy and clinical outcomes and to reduce unnecessary health care utilization and costs. However, this complex behavior is poorly understood as a result of insufficient definitions, reliance on condition-specific and/or adult models of self-management, failure to consider the multitude of factors that influence patient self-management behavior, and lack of synthesis of research, clinical practice, and policy implications. To address this need, we present a comprehensive conceptual model of pediatric self-management that articulates the individual, family, community, and health care system level influences that impact self-management behavior through cognitive, emotional, and social processes. This model further describes the relationship among self-management, adherence, and outcomes at both the patient and system level. Implications for research, clinical practice, and health care policy concerning pediatric chronic care are emphasized with a particular focus on modifiable influences, evidence-based targets for intervention, and the role of clinicians in the provision of self-management support. We anticipate that this unified conceptual approach will equip stakeholders in pediatric health care to (1) develop evidence-based interventions to improve self-management, (2) design programs aimed at preventing the development of poor self-management behaviors, and (3) inform health care policy that will ultimately improve the health and psychosocial outcomes of children with chronic conditions.

Objectives Adherence to medical regimens for children and adolescents with chronic conditions is generally below 50% and is considered the single, greatest cause of treatment failure. As the prevalence of chronic illnesses in pediatric populations increases and awareness of the negative consequences of poor adherence become clearer, the need for reliable and valid measures of adherence has grown. Methods This review evaluated empirical evidence for 18 measures utilizing three assessment methods: (a) self-report or structured interviews, (b) daily diary methods, and (c) electronic monitors. Results Ten measures met the “well-established” evidence-based (EBA) criteria. Conclusions Several recommendations for improving adherence assessment were made. In particular, consideration should be given to the use of innovative technologies that provide a window into the “real time” behaviors of patients and families. Providing written treatment plans, identifying barriers to good adherence, and examining racial and ethnic differences in attitudes, beliefs and behaviors affecting adherence were strongly recommended.

Objectives The purpose of this study was to systematically identify barriers to treatment adherence for children with cystic fibrosis (CF) and asthma, as well as to examine the relationship between the number of barriers and adherence. Methods Participants included 73 children with CF or asthma and their parents. The mean age of the sample was 9.9 years, and 58% were males. Results Results indicated that barriers were quite similar by illness and informant (e.g., parent and child) for the same treatments, but unique barriers were identified for disease-specific treatments. Frequently mentioned barriers across diseases included forgetting, oppositional behaviors, and difficulties with time management. Trends were identified between adherence and barriers, suggesting that a greater number of barriers were related to poorer adherence. Conclusion Overall, this study provided evidence that patients and their parents experience specific barriers within the context of their own illness and highlights the need for disease-specific measures and interventions.