Parents living within the paradoxes of infant death from life-limiting anomaly: A grounded theory study

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 lifelimiting 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. I want to thank the chair and members of my committee for their guidance through the dissertation process. Dr. Alvita Nathaniel, chair of the committee, was always generous with her time, support, knowledge and feedback through the numerous drafts, personal meetings and phone calls. Classic grounded theory became alive to me through her mentoring. She is a nursing scholar in the truest sense. Dr. Mary Jane Smith, my first professor in the Ph.D. program, was open and allowed me to pursue a concept of which she was unfamiliar, a concept which ultimately became the theoretical framework for this study. Dr. Peggy Burkhardt was always positive and provided invaluable feedback. Dr. Joy Buck shared her extensive background in palliative care. Dr. Paula F. Taylor, a palliative care physician, provided clinical expertise and the means to recruit enough participants to complete this dissertation. This dissertation would not exis...

Parents’ own words: Adjustment and coping following infant death in the NICU.

“…Infants who die in the NICU are often critically ill their entire lives due to congenital anomalies and other life-limiting conditions. Having an infant in the NICU can result in significant parental role disruptions, and parents may fear their infant may not survive (Dudek-Shriber, 2004;Miles et al, 1993;Welch, 2018). Parents' attention during NICU admission is commonly divided among competing demands, including physical recovery from birth, caregiving for siblings, and occupational responsibilities which may limit their presence and bonding time.…”