Navigating Infant Death from Life-Limiting Congenital Anomaly: A Classic Grounded Theory Study

Abstract

Abstract The purpose of this classic grounded theory study was to explore how parents experience the expected death of an infant from a life-limiting congenital anomaly. These anomalies are the leading cause of death of infants in the United States. Death typically occurs in intensive care units with limited access to adequate palliative/end-of-life care. An extensive knowledge gap about the experience of these parents exists. The grounded theory Navigating Infant Death from Life-Limiting Congenital Anomaly contains three stages and two cutting points. The first stage is living in innocence which ends with the first cutting point of getting the bad news. The second stage is parenting in the new reality which ends with the second cutting point, death of the baby. The final stage of the theory is going on. This new theory has implications for nursing/health care professionals in practice and research. This study was conducted as the dissertation while the author was a student in the doctoral program at West Virginia University.

Keywords

• classic grounded theory
• infant death
• congenital
• parenting
• anomaly