Exploring and Supporting Parents' Stories of Loss in the NICU: A Narrative Study

Title

Exploring and Supporting Parents' Stories of Loss in the NICU: A Narrative Study

Creator

Lakhani J; Mack C; Kunyk D; van Manen M

Publisher

Qualitative Health Research

Date

2023

Subject

child; article; controlled study; human; prematurity; palliative therapy; child parent relation; grief; uncertainty; bereavement; ethics; congenital malformation; morality; neonatal intensive care unit; infant; decision making; medical care; narrative

Description

Death is no stranger to the neonatal intensive care unit (NICU). Extreme prematurity, congenital abnormalities, and other complexities can turn what was hoped to be a very exciting moment in a family's life into one of despair and grief. There are many infants that not only do not survive but also have a medicalized death necessitating complex decision-making, weighing quality versus duration of life. We can learn from the stories of parents who chose palliative care for their children. In this narrative inquiry study, we elicited bereaved parents' stories and reflections on the lives of their children and the care they received in the NICU. From a narrative ethics perspective, their stories speak to normative aspects of parenting, decision-making, and receiving medical care that affect their moral sense-making of their NICU experiences as well as their longer-term living with the loss of their children. Their stories express the importance of having had meaningful time with their children, maintaining direct and frequent communication, acknowledging uncertainty, and emphasizing compassion as methods of providing support to parents as they navigate their bereavement.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

February List 2024

Collection

Citation

Lakhani J; Mack C; Kunyk D; van Manen M, “Exploring and Supporting Parents' Stories of Loss in the NICU: A Narrative Study,” Pediatric Palliative Care Library, accessed May 28, 2024, https://pedpalascnetlibrary.omeka.net/items/show/19488.