Semester

Fall

Date of Graduation

2012

Document Type

Dissertation

Degree Type

PhD

College

School of Nursing

Department

Family/Community Health

Committee Chair

Alvita K. Nathaniel

Committee Co-Chair

K. Joy Buck

Committee Member

Margaret A. Burkhardt

Committee Member

Mary Jane Smith

Committee Member

Paula F. Taylor

Abstract

BACKGROUND: Life-limiting congenital anomalies are the leading cause of death of infants in the United States. Most of these infants die in intensive care units with limited access to adequate palliative/end-of-life care. There is an extensive knowledge gap about the experience of the parent of infants who died from life-limiting anomaly. PURPOSE: The aims of the study was to explore the process a parent goes through as they experience the birth, life and ultimate death of an infant from a life-limiting explore the process a parent goes through as they experience the birth, life and ultimate death of an infant from a life-limiting congenital anomaly and (b) develop a substantive theory to describe the process parenting an infant with a life-limiting congenital anomaly from birth to death. METHODS: Classic grounded methodology was used to analyze field notes of open-ended interviews with 11 parents whose infant died from a life-limiting congenital anomaly between the ages of 48 hours and 15 months. FINDINGS: The grounded theory Parents Living within the Paradoxes of Infant Death from Life-Limiting Anomaly describes the experience of parents from pregnancy to life after the infant's death. The theory contains three stages and two cutting points. The first stage of the theory is living in innocence in which the pregnant/expectant parent anticipates or has a healthy baby. This stage ends with the first cutting point of getting the bad news or getting the diagnosis of a life-limiting anomaly. The second stage is being a good mom/dad in the new reality in which the parent experiences being the parent of a baby expected to die from a life-limiting anomaly. The second stage ends with the second cutting point, death of the baby. The final stage of the theory is going on describes how a parent goes on with life after the death of the baby. CONCLUSIONS: Parents living within the paradoxes of infant death from life-limiting anomaly has great implications for nursing in education, practice and research. This new grounded theory has the potential to assist in improving palliative and end-of-life care for infants.

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