Lived experience of newborn death: a hermeneutic phenomenology study
File(s)
Author(s)
Pant, Stuti
Type
Thesis or dissertation
Abstract
With technological advances in neonatal intensive care, most deaths occur following withdrawal of life-sustaining treatment. However, little is understood about experiences of those that these deaths effect, including bereaved parents and neonatal intensive care unit (NICU) staff. Thus, I explored the lived experiences of these groups to generate a comprehensive understanding of the phenomenon of newborn death.
A meta-synthesis of existing global qualitative research related to parental experiences of newborn death in a NICU was conducted, including 20 studies from 11 countries (740 participants). The central theme highlighted that an absence of relational care impacts parental grief and bereavement experience. A dearth of published literature and knowledge gap around the holistic lived experiences of parents relating to newborn was evident.
The theoretical basis for the empirical study was hermeneutic phenomenology, guided by the works of Heidegger and Van Manen, exploring essence, and meaning of the lived experience of newborn death. Main data collection method was semi-structured in-depth interviews.
Thirteen parents (9 mothers and 4 fathers) were interviewed. Parental narratives generated a core theme of ‘loss of agency’ that affected their bereavement journey and pushed their grief towards disenfranchisement. Eight NICU staff (5 nurses and 3 doctors) were also interviewed. Analysis revealed an emerging theme, ‘creating an optimal experience for parents’. The overarching phenomenon of the thesis is that, despite the efforts from staff to create an optimal experience for parents, an absence of relational care in the NICU contributed to a loss of agency for parents.
The study provides a new perspective on the NICU lifeworld experienced by parents and staff while living through newborn death, highlighting the misunderstandings and practice gaps. It provides key recommendations with direct implications for research and practice, which should guide efforts in development of pragmatic supportive programmes for grieving parents and training for staff.
A meta-synthesis of existing global qualitative research related to parental experiences of newborn death in a NICU was conducted, including 20 studies from 11 countries (740 participants). The central theme highlighted that an absence of relational care impacts parental grief and bereavement experience. A dearth of published literature and knowledge gap around the holistic lived experiences of parents relating to newborn was evident.
The theoretical basis for the empirical study was hermeneutic phenomenology, guided by the works of Heidegger and Van Manen, exploring essence, and meaning of the lived experience of newborn death. Main data collection method was semi-structured in-depth interviews.
Thirteen parents (9 mothers and 4 fathers) were interviewed. Parental narratives generated a core theme of ‘loss of agency’ that affected their bereavement journey and pushed their grief towards disenfranchisement. Eight NICU staff (5 nurses and 3 doctors) were also interviewed. Analysis revealed an emerging theme, ‘creating an optimal experience for parents’. The overarching phenomenon of the thesis is that, despite the efforts from staff to create an optimal experience for parents, an absence of relational care in the NICU contributed to a loss of agency for parents.
The study provides a new perspective on the NICU lifeworld experienced by parents and staff while living through newborn death, highlighting the misunderstandings and practice gaps. It provides key recommendations with direct implications for research and practice, which should guide efforts in development of pragmatic supportive programmes for grieving parents and training for staff.
Version
Open Access
Date Issued
2024-03-26
Date Awarded
2024-07-01
Copyright Statement
Creative Commons Attribution NonCommercial Licence
License URL
Advisor
Thayyil, Sudhin
Lavender, Tina
Kelly, Michael
Publisher Department
Department of Brain Sciences
Publisher Institution
Imperial College London
Qualification Level
Doctoral
Qualification Name
Doctor of Philosophy (PhD)