All ETDs from UAB

Advisory Committee Chair

Karen Meneses

Advisory Committee Members

Becky J Christian

Sara W Day

Pamela S Hinds

Samuel J Perna

Cheryl B Robinson

Document Type

Dissertation

Date of Award

2014

Degree Name by School

Doctor of Philosophy (PhD) School of Nursing

Abstract

Introduction: Little is known about parent experiences with end-of-life and palliative care consultation in the neonatal intensive care unit (NICU). The purpose of this study was to: (a) describe parent experiences related to their infant's NICU hospitalization, end-of-life care, and palliative care consultation, and (b) parents' bereavement and coping experiences after infant death. Methods: A descriptive qualitative approach was used to explore and describe parent experiences during their infant's hospitalization in the NICU and bereavement and coping experiences after infant death. Ten parents (seven mothers and three fathers) of infants who had previously died in the NICU were recruited using convenience sampling methods until data saturation was met. Background information was obtained from a demographic questionnaire. Interview data were analyzed using qualitative content analysis. Results: In-person semi-structured interviews revealed two major themes with five categories. "Life and Death in the NICU Environment" was the first major theme with the following categories: (a) the ups and downs of parenting in the NICU, (b) decision-making challenges in the NICU, and (c) parent support. "Life after Loss" was the second major theme that emerged from the interviews with the following categories: (a) living with loss and (b) coping with grief over time. Conclusions: "Being a parent" was extremely important for these participants regardless of the infant's prognosis. Nurses played a critical role in facilitating parenting in the NICU. Parents encountered various challenges in the NICU and reported several sources of support that helped them through the hospitalization. Although barriers to initiating palliative care consultation were present, palliative care was a helpful source of support for parents in the NICU. Living with infant loss was a catastrophic and life-changing event for these parents. Coping with infant death proved to be a complex process that evolved over time. Parents oscillated between focusing on the loss and living in a world without their infant. The results from this study suggest there are areas for improvement in the provision of end-of-life and palliative care in the NICU that may be addressed by further research efforts and changes in practice and policy.

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