Parents’ Lived Experiences of Neonatal End of Life and Journeys With Their Grief, An Interpretative Phenomenological Study

Barnard, Michaela; Smith, Joanna; Long, Tony

Abstract

Medical and pharmacological advancements have influenced the ability to treat acutely ill neonates. However, complications of prematurity mean that death is unpreventable in some cases. The aim of this study was to explore parents’ lived experiences of end of life care and their perceptions of support needs during and following the death of their baby in neonatal intensive care units in the United Kingdom.
A qualitative interpretative phenomenological analysis design was adopted. Unstructured interviews were undertaken with seven parents (five mothers and two fathers). Interpretative phenomenological analysis was used to analyze the data.
Four themes emerged from the analysis: ‘the enormity of grief’, ‘redefining self and social relations’, ‘trying to survive’ and ‘routes to improved support’.
Parents’ experiences of neonatal care after the death of their baby were variable but all narratives highlight a grief that is deep and overwhelming. The Neonatal Grief Sandstorm visual tool, developed from the findings, has potential to support bereavement conversations between health professionals and parents.

Citation

Barnard, M., Smith, J., & Long, T. (in press). Parents’ Lived Experiences of Neonatal End of Life and Journeys With Their Grief, An Interpretative Phenomenological Study. Death Studies, Article Manuscript ID 240559667.R1

• Journal Article Type: Article
• Acceptance Date: Nov 23, 2024
• Deposit Date: Nov 27, 2024
• Journal: Death Studies
• Print ISSN: 0748-1187
• Electronic ISSN: 1091-7683
• Publisher: Routledge
• Peer Reviewed: Peer Reviewed
• Article Number: Manuscript ID 240559667.R1
• Keywords: neonate, parent, end of life, grief, support