Date of Award

January 2012

Document Type

Open Access Thesis

Degree Name

Medical Doctor (MD)

Department

Medicine

First Advisor

Megan E. McCabe

Subject Area(s)

Medicine

Abstract

FAMILY COMMUNICATION PRACTICES ABOUT DEATH IN THE SETTING OF PEDIATRIC MALIGNANCY RELAPSE: A QUALITATIVE STUDY.

Caitlin E. Koerber (Sponsored by Megan E. McCabe), Section of Hematology and Oncology, Department of Pediatrics, Yale University School of Medicine, New Haven, CT.

ABSTRACT: This qualitative study was undertaken to describe adolescent and parent thoughts and fears about the adolescent patient's possible death following relapse of a pediatric malignancy. Other aims were to characterize the range of communication styles used by families to talk about death with one another, and to identify contexts in which communication about their thoughts and fears takes place. Semi-structured, one-on-one interviews were conducted with four patients and seven parents by a single interviewer. Interviews were recorded and transcribed. Multiple coders used NVivo9 software to identify emerging themes through inductive qualitative analysis. This study found that families used a range of communication practices to share information about their experiences living with cancer. These communication practices include open communication that discloses all information, avoidant communication that restricts information exchange, and honest communication that consists of sharing information upon request. Communications about the patient's possible death occurred in the context of discussions of fears about the patient's death, fears of the patient's relapse, the patient's near death experiences, experiences with the deaths of other patients, and patient's thoughts about stopping treatment. In general, family feelings about communication align such that parents and patients share a common communication style across a range of contexts for communication about death. However, families may change their communication style from one context to another. In all, greater differences exist between families than within them. Physicians must identify which communication style may be helpful to families in discussing death in order to assist them in meeting their information needs with this stressful topic.

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