Families with Chronically Ill Young Children

Abstract

Improvements in newborn care and technology have markedly increased the prevalence of children with chronic medical, neurologic, and/or developmental problems. As yet, however, there is little descriptive information available on the everyday life of a family with a chronically ill child. This study examined how a chronic illness in a young child affects the daily lives of family members. Data were collected via qualitative methods and included interviews and home observations of family members and their chronically ill child(ren). For this study the family itself was the unit of observation and analysis. The families reported frequent low vitality, selective interest in available support groups, restricted social life, and preoccupation with decisions related to their child's illness. The demands of their daily lives and the effects of the child's condition on their decisions are discussed in the context of general strategies for dealing with day-to-day problems. These general strategies are delineated as active or passive approaches to decision making. This study identifies portraits of the daily lives and concerns of families with a chronically ill child.