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Families with Chronically Ill Young Children

The Unsinkable Family

Sylvia S. Martin received her EdD in special education from the University of Houston and is adjunct faculty in the educational psychology department at the University of Houston. She is also employed by Advocacy, Inc., in Houston. Her research interests include social integration of young children, families of children with disabilities, and the education of students with severe disabilities.

Michael P. Brady

Michael P. Brady received his PhD in special education from Vanderbilt University and is an associate professor in the educational psychology department at the University of Houston. His research interests include behavioral and instructional strategies, social integration, and teacher training programs for students with substantial handicaps.

Joseph A. Kotarba

Joseph A. Kotarba received his PhD in sociology from the University of California--San Diego and is an associate professor in the department of sociology at the University of Houston. He teaches qualitative research methods, social theory, medical sociology, and sociology of popular culture. He is currently conducting research on the everyday life of homeless adolescents, and on the role of rock music as a medium for family interaction. Address: Sylvia S. Martin, Department of Educational Psychology, College of Education, University of Houston, Houston, TX 77204-5874.

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.

Remedial and Special Education, Vol. 13, No. 2, 6-15 (1992)
DOI: 10.1177/074193259201300203


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