Parents' lived experience of support through their neonate's end of life and grief journey: An interpretative phenomenology study.

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Bibliographic Details
Title: Parents' lived experience of support through their neonate's end of life and grief journey: An interpretative phenomenology study.
Authors: Barnard, Michaela (AUTHOR), Smith, Joanna (AUTHOR), Long, Tony (AUTHOR)
Source: Death Studies. 2026, Vol. 50 Issue 4, p606-619. 14p.
Subjects: Qualitative research, Neonatal intensive care units, Interviewing, Parent attitudes, Neonatal intensive care, Psychological adaptation, Judgment sampling, Descriptive statistics, Infant death, Experience, Sound recordings, Thematic analysis, Anticipatory grief, Research methodology, Social support, Terminal care, Medical needs assessment, Phenomenology, Children
Geographic Terms: United Kingdom
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. [ABSTRACT FROM AUTHOR]
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Database: Psychology and Behavioral Sciences Collection
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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. [ABSTRACT FROM AUTHOR]
ISSN:07481187
DOI:10.1080/07481187.2024.2443438