Issues in Research on the Young Chronically III Child

Abstract

A major goal of research on chronic illness in children is to determine how the illness interacts with developmental processes. The child must be studied within the context of the family, the school, and the health care system. Problems in research include the use of appropriate control groups and matching on control variables. The generic, or cross-categorical, approach has led to the identification of factors affecting children regardless of particular illness. Adjustment to school depends on coordination of the family and health professionals with personnel within the school. Researchers have begun to recognize that chronic illnesses in children are a major problem affecting between 5% and 10% of all children in the United States (Gortmaker & Sappenfield, 1984; Haggarty, 1984). Research has tended to focus on specific illnesses and to be either biomedical or psychological, but seldom both. Recently, several regional and national conferences have been aimed at issues involving chronically ill children and their families. A base of data is emerging upon which decisions can be made concerning the availability and delivery of services (Perrin & Ireys, 1984). It is clear to those working within this area that reform is needed in legislation, policy, and practice if these children are to have the medical, educational, and social services they need in order to have the opportunity to develop maximally and become productive adults.

Intellective Functioning and Strategy Use in Children with Insulin-Dependent Diabetes Mellitus

“…They suggest a noncategorical approach to chronic illness in children, which is known as the generic model. A dimensional approach, devised from the generic model, provides a way to take into account the information pertinent to the specific illness as well as psychological, social, and environmental factors within a development framework (Hagen et al, 1986(Hagen et al, , 1987. Accordingly, the interpreted meaning of a disease, or "illness narrative" (Kleinman, 1988), can be distinguished from biological disease profiles and acute sickness.…”

The influence of the family environment on personality: Accounting for sibling differences.

“…These studies point up both the direct effects of the illness on the child's personality development, particularly the self-concept, and the effects on the parents' differential treatment of their children. The research indicates that chronic illness is likely to affect the developmental path of both the ill child and the siblings, but the direction of the effects is different (Feeman & Hagen, 1990; Hagen, Anderson, & Barclay, 1986; Lobato, 1983). Among the findings are that the illness may involve a shift in sibling hierarchies with the ill child treated as the younger and the healthy as the older, despite actual ordinal position; and that the ill child may be overprotected and unnecessarily encouraged in dependency patterns (Hagen et al, in press).…”

Adaptation to juvenile rheumatic disease: A controlled evaluation of functional disability with a one-year follow-up.

“…To date, however, relatively little research has focused on JRD. In addition, studies on JRD and other chronic childhood disorders have frequently failed to use a comparable control group (Breslau, 1983; Hagen, Anderson, & Barclay, 1986). Furthermore, research on the psychosocial functioning of children with chronic illness has often relied solely on mothers’ reports, neglecting the rich, firsthand experiences of the patients themselves.…”