Parents’ lived experience of support through their neonate’s end of life and grief journey
An interpretative phenomenology study
Bibliographic Data
| ID | 12096771 |
|---|---|
| Authors | Michaela Barnard (0000-0003-1646-1357, University of Manchester, corresponding author), Joanna Smith (0000-0003-0974-3591, Sheffield Children’s NHS Foundation Trust/School for Health and Social Care, College of Health & Wellbeing and Life Sciences, Sheffield Hallam University), Tony Long (0000-0003-2726-8798, University of Salford) |
| Year | 2025 |
| Volume | 50 |
| Issue | 4 |
| Pages | 606-619 |
| Publication date | 2025-01-21 |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Death Studies (JOURNAL) |
| Journal identifiers | ISSN: 0748-1187 • E-ISSN: 1091-7683 |
| Publisher | Taylor & Francis (PUBLISHER • GB) |
| DOI | 10.1080/07481187.2024.2443438 |
| PMID | 39835915 |
| OpenAlex | W4406669129 |
| Language | EN |
| Citations received | 1 |
| References cited | 26 |
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
Coping (psychology · Developmental psychology · Epistemology · Grief · Interpretative phenomenological analysis · Lived experience · Phenomenology (philosophy · Psychoanalysis · Psychotherapist · Qualitative research · Social support · Sociology · Anthropology · Family and Patient Care in Intensive Care Units · Grief, Bereavement, and Mental Health · Palliative Care and End-of-Life Issues · Philosophy · Psychology
Bereavement research
The necessary and sufficient conditions of therapeutic personality change.
Interpretative Phenomenological Analysis
Using simulation as a learning experience in clinical teams to learn about palliative and end-of-life care
The Disenfranchisement of Perinatal Grief
Overwhelming and unjust
The Dual Process Model of Coping With Bereavement
Naturalistic inquiry
Reconstructing selves
Former Nicu Families Describe Gaps in Family-Centered Care
Capturing Lived Experience
| Citations per year | 1 |
|---|---|
| Citation span | 2026 - 2026 (1) |
| Highly cited | No |