Estimates are that between 10 and 20 million children and adolescents in the United States suffer from some type of chronic physical illness or dysfunction: a condition or impairment that is expected to last for an extended period and requires substantial medical attention, extensive hospitalization, or in-home health services (Committee on Children with Disabilities and Committee on Psychosocial Aspects of Child and Family Health, 1993). Chronic conditions can be described in terms of their duration and severity. Though each condition varies significantly in terms of its course, a chronic condition tends to last 3 months or longer (Perrin et al., 1993). Similarly, severity of a condition refers to the effects of the disorder on a child’s physical, educational, emotional, or social functioning (Stein et al., 1987). Examples of typical chronic conditions in children include the following:

Chronic illnesses are associated with the potential for long-term sequellae and, in most cases, death. Their life-threatening quality tends to drive the psychological reactions seen in affected children and their families. Estimates vary about the incidence of psychiatric disorders in children and adolescents affected by chronic illness. It has long been posited that children with chronic physical illness or impairment are at an increased risk for psychiatric and psychosocial morbidity. While some evidence suggests that the rate of psychiatric comorbidity in such children may be as high as twice that of their healthy counterparts, other research suggests that the psychiatric impact of such conditions is small (Canning, Canning, & Boyce, 1992). At Memorial Sloan-Kettering Cancer Center, the Pediatric Psychiatry Service conducted 74 new consultations in a 1-year period. The treatment of patients with chronic illness accounted for more than 420 visits to the Psychiatry Service in that year alone (Damore, 1998). Reports also have shown that such conditions create significant disturbances in the quality of life in at least 10% of such children (Committee on Children with Disabilities and Committee on Psychosocial Aspects of Child and Family Health, 1993). Furthermore, these illnesses can and often do disrupt relationships between family members (Jessop, Reissman, & Stein, 1988; Hoore & Kerley, 1991). Regardless of discrepancies reported in the literature, such statistics obtained in a naturalistic clinical setting are difficult to ignore.

This chapter is meant to provide the pediatric primary care provider with an overview of common psychosocial sequellae to most chronic illnesses seen in children. The first section presents usual, nonpathologic responses encountered when children and families face chronic illness. The second section discusses problematic behaviors providers may encounter in children with chronic illness and explores possible interventions.

As a result of advances in medical technology, many childhood illnesses that once were rapidly fatal can now be managed and do not necessarily result in a child’s death. Though the death of an affected child may be forestalled or even prevented, the shock and disbelief that accompany the diagnosis and the uncertainty associated with treatment and follow-up normally create ripples of sadness and fear.