Lived experience of healthcare personnel in supporting parents around neonatal death
Author(s)
Pant, Stuti
Kelly, Michael P
Moreno Morales, Maria
Thayyil, Sudhin
Lavender, Tina
Type
Journal Article
Abstract
Objective
To explore healthcare personnel’s (HCP) lived experiences of caring for dying newborns and supporting bereaved parents in neonatal intensive care unit (NICU), drawing on relational, ethical and organisational factors.
Design
Qualitative study using hermeneutic phenomenology. Semi-structured, in-depth interviews analysed thematically to interpret the meanings embedded in participant narratives.
Setting
Three tertiary NICUs in the United Kingdom.
Participants
Eight female HCP (five nurses; three doctors) with 3–20 years’ (Median=12 years) NICU experience.
Results
Experiences were strongly shaped by temporality and clinical trajectory. Expected deaths (gradual decline) enabled preparation, continuity of carer and opportunities for closeness and memory making, whereas unexpected deaths (sudden deterioration) heightened moral distress, complicated communication and constraints what could be offered to families. Four themes described how optimal experiences were pursued: (1) facilitating parent–infant closeness, (2) providing comprehensive family support, (3) communication and interpersonal engagement, and (4) an emotionally intense experience for HCPs.
The study revealed an overarching phenomenon—creating an optimal experience for parents as an implicit coping mechanism for HCP. As they cared for a dying newborn and its family it helped them achieve a sense of accomplishment as well as the strength to power through the distress and anguish.
Conclusions
The study highlights the relational foundation of neonatal end-of-life care, showing that HCPs well-being and quality of parental support and care provided are closely linked. Recognising this inter-dependence may inform training, supervision and organisational design to strengthen compassionate and sustainable NICU bereavement care.
To explore healthcare personnel’s (HCP) lived experiences of caring for dying newborns and supporting bereaved parents in neonatal intensive care unit (NICU), drawing on relational, ethical and organisational factors.
Design
Qualitative study using hermeneutic phenomenology. Semi-structured, in-depth interviews analysed thematically to interpret the meanings embedded in participant narratives.
Setting
Three tertiary NICUs in the United Kingdom.
Participants
Eight female HCP (five nurses; three doctors) with 3–20 years’ (Median=12 years) NICU experience.
Results
Experiences were strongly shaped by temporality and clinical trajectory. Expected deaths (gradual decline) enabled preparation, continuity of carer and opportunities for closeness and memory making, whereas unexpected deaths (sudden deterioration) heightened moral distress, complicated communication and constraints what could be offered to families. Four themes described how optimal experiences were pursued: (1) facilitating parent–infant closeness, (2) providing comprehensive family support, (3) communication and interpersonal engagement, and (4) an emotionally intense experience for HCPs.
The study revealed an overarching phenomenon—creating an optimal experience for parents as an implicit coping mechanism for HCP. As they cared for a dying newborn and its family it helped them achieve a sense of accomplishment as well as the strength to power through the distress and anguish.
Conclusions
The study highlights the relational foundation of neonatal end-of-life care, showing that HCPs well-being and quality of parental support and care provided are closely linked. Recognising this inter-dependence may inform training, supervision and organisational design to strengthen compassionate and sustainable NICU bereavement care.
Date Acceptance
2026-04-01
Citation
BMJ Paediatrics Open
ISSN
2399-9772
Publisher
BMJ Publishing Group
Journal / Book Title
BMJ Paediatrics Open
Copyright Statement
Copyright This paper is embargoed until publication. Once published the Version of Record (VoR) will be available on immediate open access.
License URL
Publication Status
Accepted