The psychological burden inflicted by multiple cancers in Li-Fraumeni families: Five case studies

Abstract

To gain insight into the psychological, emotional, relational, and family problems of families afflicted by Li-Fraumeni syndrome, we interviewed members of five such families in the Pediatric Oncology Department, Gustave Roussy Institute, where at least one member of the family had been treated. These interviews showed that families were psychologically fragile, that their interactions and thinking patterns were related to a family background plagued by the repeated occurrence of cancer, and was often marked by physical or psychological violence. They had complex imaginary etiologic explanations, and showed an ambivalent willingness to learn about cancer and the risks involved. They expressed their fear of transmitting doom and death, posed questions about whether their parents would have had them had they known the test result, and about what their own attitude would be toward childbearing. Thus genetic testing awoke disconcerting and unsolved questions for them. These first results can contribute to the design of supportive interventions and future clinical research. © 2001 National Society of Genetic Counselors, Inc.