Navigating care after a baby dies: a systematic review of parent experiences with health providers
Abstract
Introduction Health care providers are on the front lines of care when a baby dies, but there is no consensus about which behaviors are most helpful or harmful for families.Materials and methods This systematic review of more than 1100 English-language articles from 1966 to 2006 addressed fetal and early infant loss and extracted information about interactions with health providers.Results Sixty-one studies, covering over 6000 parents, met criteria. Nurses were generally viewed as more emotionally supportive than physicians. Parents valued emotional support, attention to mother and baby and grief education. Avoidance, insensitivity and poor staff communication were the most distressing behaviors encountered.Discussion Interactions with health providers has profound effects on parents with perinatal losses. Grieving parents perceive many behaviors to be thoughtless or insensitive. Physicians and nurses may benefit from increased training in bereavement support.
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Miscarriage, stillbirth and neonatal death are intensely painful and traumatic for many parents and associated with substantial direct and indirect, psychological and social costs to women, families and society.
“Miscarriage, stillbirth and neonatal death are intensely painful and traumatic for many parents1 and associated with substantial direct and indirect, psychological and social costs to women, families and society.2”
From Parents’ experiences of care following the loss of a baby at the margins between miscarriage, stillbirth and neonatal death: a UK qualitative study (2020) · cites this paper as [1]
The use of sedation or tranquilizers was identified in older literature, although this practice was also identified in a few more recent sources.
“The use of sedation or tranquilizers was identified in older literature, although this practice was also identified in a few more recent sources.”
From Bereavement care guidelines used in health care facilities immediately following perinatal loss: a scoping review (2024) · cites this paper as [53]
Parents' mental health outcomes related to making meaning/memories were documented in 29 reports and included coping, anxiety, and depression.
“Parents’ mental health outcomes related to making meaning/memories were documented in 29 reports,17,25,53,54,58,60,63,64,69,70,76,86,89,98,103,107,110,111,116,119,121,122,127,137–139,148,149,154 and included coping, anxiety, and depression.”
From Bereavement care guidelines used in health care facilities immediately following perinatal loss: a scoping review (2024) · cites this paper as [53]
Other specific recommendations found in older literature are no longer practiced, such as announcing the loss on the ward and suggesting to hold someone else's newborn.
“Other specific recommendations also found in older literature are no longer practiced (eg, announcing the loss on the ward, suggestion to hold someone else’s newborn).”
From Bereavement care guidelines used in health care facilities immediately following perinatal loss: a scoping review (2024) · cites this paper as [53]
One way that parents desire acknowledgment of this unique situation is to have a picture of all their children together and separately of the baby who died.
“One way that parents desire acknowledgment of this unique situation is to have a picture of all their children together and separately of the baby who died.53,188,223”
From Bereavement care guidelines used in health care facilities immediately following perinatal loss: a scoping review (2024) · cites this paper as [53]
Our findings confirm a shared theme in the literature on the psychological impact of stillbirth on parents: the grief and devastation are deeply felt but not socially recognized.
“Our findings confirm a shared theme in the literature on the psychological impact of stillbirth on parents: the grief and devastation are deeply felt but not socially recognized [7,24,27-30].”
From Silent loss and the clinical encounter: Parents’ and physicians’ experiences of stillbirth–a qualitative analysis (2012) · cites this paper as [29]
Despite limitations, the dominant themes that emerged from this analysis, including the depth of the parents' grief surrounding the loss and the lack of social support or empathy during the grieving process, echo themes found in emerging U.S. and international data on the experience of stillbirth and confirm their broader validity.
“Despite these limitations, the dominant themes that emerged from this analysis, including the depth of the parents’ grief surrounding the loss, and the lack of social support or empathy during the grieving process, echo themes found in the emerging U.S. and international data on the experience of stillbirth and confirm their broader validity [27,29,31,32].”
From Silent loss and the clinical encounter: Parents’ and physicians’ experiences of stillbirth–a qualitative analysis (2012) · cites this paper as [29]
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- Authors
- Gold, K. J.
- Affiliations
- Michigan Medicine (US)
- Corresponding author
- Gold, K J
- ORCID
- Gold, K J
- Venue
- Journal of Perinatology
- Published
- 2007-03-22
- Volume
- 27
- Issue
- 4
- Pages
- 230-237
- ISSN
- 0743-8346 (ISSN-L)
- 1476-5543
- OpenAlex
- W1974744759
- Cited by
- 219
- References
- 51
- Citations by year
- 2026: 4 · 2025: 4 · 2024: 8 · 2023: 22 · 2022: 10 · 2021: 13 · 2020: 6 · 2019: 13 · 2018: 19 · 2017: 16 · 2016: 20 · 2015: 19 · 2014: 10 · 2013: 8 · 2012: 16
- FWCI
- 1.31
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Journal of Perinatology (publishedVersion)
- PubMed (publishedVersion)
- Funders
- Robert Wood Johnson Foundation
- Topics
- Social Sciences › Psychology › Clinical Psychology › Grief, Bereavement, and Mental Health
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
- Keywords
- perinatal loss, fetal death, infant death, parental experiences, nurses, physicians, bereavement support, emotional support, internal communication, grief education
- MeSH terms
- Bereavement, Fetal Death, Humans, Infant Mortality, Infant, Newborn, Parents, Professional-Patient Relations, Sudden Infant Death, Patient Satisfaction, Neonatal Nursing
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