The role of effective communication with children and their families in fostering adherence to pediatric regimens

Abstract

Adherence to pediatric health enhancement, disease prevention, and medical treatment, particularly for chronic disease, can be challenging because of demanding regimens, children's progressing developmental stages, and varying family perspectives and relationships. This review examines adherence in the context of communication among providers, pediatric patients, and their families. The focus is on: the delivery of prevention and treatment information; trust in the therapeutic relationship; beliefs and attitudes in shaping acceptance of health care messages; social and cultural norms; building patient and family commitment to behavior change; family habits; barriers and pressures faced by patients and their families; the role of social networks and social support in fostering adherence, and the effects of family cohesiveness and family conflict. The unique challenges of fostering preventive health care and treatment for chronic disease in the context of transition to adolescence are also considered, and effective clinical solutions are reviewed.

Introduction

Health promotion, disease prevention, and successful medical management, particularly of chronic disease, can be difficult to attain in pediatric care. Simply adhering to a healthy lifestyle—limiting sun exposure, getting some exercise, eating fruits and vegetables everyday, avoiding smoking, and having recommended physician visits and immunizations—can be challenging enough for healthy children and adolescents. While certain omissions (such as vaccinations and automobile safety belts) can have devastating immediate consequences, for the most part failure of healthy children and adolescents to follow health promotion strategies tends to have more distal consequences such as health problems in later years. For the 7.5 million who have chronic diseases (e.g., asthma, diabetes, cystic fibrosis (CF), rheumatoid arthritis, gastro-intestinal disorders, renal failure), however, the need to adhere every day to medical interventions can sometimes be overwhelming [1], [2], making life seem like “an endless cycle of medications, treatments, procedures, and medical visits” ([3], p. 394). For chronically ill children and adolescents, health behavior can be an incessant and awesome daily task, the poor management of which can lead to further morbidity and even death [4].

Adherence (also termed compliance) involves the accurate observance by a patient of a prevention or treatment regimen set out by a health professional. Decades of research on this subject have produced many important findings that have both clinical and research implications [5]. Nonadherence (or noncompliance) can have some very serious consequences. Failure to follow medication prescriptions can be a major cause of the proliferation of drug resistant infections as well as of serious drug reactions and interactions. Noncompliance can waste billions of health care dollars and can even be a cause to withhold treatment such as transplantation [6], [7]. Nonadherence can result in limited benefits of care [8] and can compromise the health outcomes of pediatric treatment by as much as 71% (and on average by 33%) [9]. The long-term maintenance of adherence is critically important in chronic disease because disease management is life-long and can pervade every aspect of daily life.

Adherence to pediatric treatment regimens for chronic disease is particularly difficult to achieve. In the treatment of cystic fibrosis, for example, adherence to required dietary regimens can be as low as 12–16% [10]. In insulin-dependent diabetes mellitus (IDDM), adherence is also low, with as many as 25% of patients neglecting their insulin injections, 81% eating an improper diet, and 29% failing to conduct all of their required blood glucose monitoring (sometimes reporting false results to their health professionals) [11]. Although the characteristics of each particular disease and treatment regimen are unique, there are some commonalities across pediatric adherence problems. Generally, the adherence of children and adolescents can be particularly complex because it frequently involves intricate family relationships and perspectives and because regimens can be demanding both behaviorally and psychologically, particularly when the illness is serious [12]. The demands of treatment can overwhelm the developmental abilities of the child and/or the emotional and physical resources of the family [13]. Other developmental issues can affect adherence as well, such as separation/individuation, limited abilities in risk assessment, conscious risk-taking, and peer group pressures. The day-to-day treatment regimens of the pediatric patient might even be precisely contradictory to the goals of the rest of the family (such as when the child with CF eats high fat, high calorie foods while other family members attempt to lose weight) [2]. Improving pediatric adherence is particularly important, however, because there is evidence that complying with treatment may have an even greater effect on the health outcomes of children than on those of adults [9].