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

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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]
Copyright of Death Studies is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database: Psychology and Behavioral Sciences Collection
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  Data: Parents' lived experience of support through their neonate's end of life and grief journey: An interpretative phenomenology study.
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  Data: 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]
– Name: AbstractSuppliedCopyright
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  Data: <i>Copyright of Death Studies is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=pbh&AN=191948490
RecordInfo BibRecord:
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    Identifiers:
      – Type: doi
        Value: 10.1080/07481187.2024.2443438
    Languages:
      – Code: eng
        Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 14
        StartPage: 606
    Subjects:
      – SubjectFull: Qualitative research
        Type: general
      – SubjectFull: Neonatal intensive care units
        Type: general
      – SubjectFull: Interviewing
        Type: general
      – SubjectFull: Parent attitudes
        Type: general
      – SubjectFull: Neonatal intensive care
        Type: general
      – SubjectFull: Psychological adaptation
        Type: general
      – SubjectFull: Judgment sampling
        Type: general
      – SubjectFull: Descriptive statistics
        Type: general
      – SubjectFull: Infant death
        Type: general
      – SubjectFull: Experience
        Type: general
      – SubjectFull: Sound recordings
        Type: general
      – SubjectFull: Thematic analysis
        Type: general
      – SubjectFull: Anticipatory grief
        Type: general
      – SubjectFull: Research methodology
        Type: general
      – SubjectFull: Social support
        Type: general
      – SubjectFull: Terminal care
        Type: general
      – SubjectFull: Medical needs assessment
        Type: general
      – SubjectFull: Phenomenology
        Type: general
      – SubjectFull: Children
        Type: general
      – SubjectFull: United Kingdom
        Type: general
    Titles:
      – TitleFull: Parents' lived experience of support through their neonate's end of life and grief journey: An interpretative phenomenology study.
        Type: main
  BibRelationships:
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      – PersonEntity:
          Name:
            NameFull: Barnard, Michaela
      – PersonEntity:
          Name:
            NameFull: Smith, Joanna
      – PersonEntity:
          Name:
            NameFull: Long, Tony
    IsPartOfRelationships:
      – BibEntity:
          Dates:
            – D: 01
              M: 04
              Text: 2026
              Type: published
              Y: 2026
          Identifiers:
            – Type: issn-print
              Value: 07481187
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              Value: 50
            – Type: issue
              Value: 4
          Titles:
            – TitleFull: Death Studies
              Type: main
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