Addressing Parental Bereavement Support Needs at the End of Life for Infants with Complex Chronic Conditions
Open accessAbstract
INTRODUCTION: Health care providers' understandings of parental bereavement needs before and in the acute period following the death of an infant with a complex chronic condition are based upon models that outline the process of grief and provide direction for possible points of intervention. These models do not address prospective factors along the illness trajectory that may contribute to the depth and debilitating nature of grief, and fail to clarify the influence of social structures on parents' experience and construct of grief, loss, and mourning. The purpose of this study was to prospectively describe the bereavement experience of parents whose infants die in acute care settings with a complex chronic condition. METHODS: A longitudinal, qualitative, descriptive design was used to explore the process of parental bereavement. Extreme case sampling with variation on race, socioeconomic status, prenatal diagnosis, and multiple gestations was used to select 7 cases represented by over 72 narrative interviews with parents. RESULTS: Findings are organized into five broad categories: Having Expectations, Continuity of Care, Memory Making, Wide Network of Support, and Altruism. Themes under each category were developed based upon examples given in the parental interviews. CONCLUSION: This study provides an exploration of the complex and longitudinal nature of bereavement. Anticipatory support initiated prior to the death of an infant can help parents experience a smoother transition from caring for their very ill child to coping with the actual death event and its aftermath.
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Training programs or tested protocols for supporting parent bereavement after a stillbirth remain inconsistent and in need of further evaluation and development.
“training programs or tested protocols for supporting parent bereavement after a stillbirth remain inconsistent and in need of further evaluation and development [17-24]”
From Silent loss and the clinical encounter: Parents’ and physicians’ experiences of stillbirth–a qualitative analysis (2012) · cites this paper as [22]
The Introduction says existing bereavement-support models leave important factors unaddressed, and the Discussion calls for research evaluating effects on parental bereavement outcomes. However, the study concerns parents of infants who died with complex chronic conditions, not stillbirth, and it does not establish that training programs or tested protocols are inconsistent. (LLM, conf=0.84)
Experimental — accuracy not yet measuredA few parents and clinicians mentioned the use of grief kits and other programs to help parents bring meaning to their child's death, which have been adopted from neonatal and pediatric palliative care practices.
“A few parents and clinicians mentioned the use of grief kits and other programs to help parents bring meaning to their child’s death, which have been adopted from neonatal and pediatric palliative care practices [19-23].”
From Silent loss and the clinical encounter: Parents’ and physicians’ experiences of stillbirth–a qualitative analysis (2012) · cites this paper as [22]
The “Memory making” section (page not provided) reports that parents valued memory boxes and handprints made by hospital staff, and the Discussion recommends these as bereavement supports. The paper does not call them grief kits or say that these supports were adopted from neonatal and pediatric palliative care practices. (LLM, conf=0.84)
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References 26 · Cited by 70
Research works printed but not linked: 2
- [8]Kubler-Ross E. Kessler D. On Grief and Grieving. New York: Scribner Inc.; 2005. [Google Scholar]
- [9]Worden JW. Grief counselling, grief therapy. New York: Springer Publishing Company; 2009. [Google Scholar]
- Authors
- Tan, J. S., Docherty, S. L., Barfield, R., & Brandon, D. H.
- Affiliations
- Duke-NUS Medical School (SG)
- Duke University (US)
- Duke University Hospital (US)
- Corresponding author
- Docherty, Sharron L.
- Venue
- Journal of Palliative Medicine
- Publisher
- SAGE Publications
- Published
- 2012-05
- Volume
- 15
- Issue
- 5
- Pages
- 579-584
- ISSN
- 1096-6218 (ISSN-L)
- 1557-7740
- PMC
- PMC3353765
- OpenAlex
- W1969693392
- Cited by
- 70
- References
- 26
- Citations by year
- 2026: 1 · 2025: 3 · 2024: 5 · 2023: 1 · 2022: 7 · 2021: 11 · 2020: 7 · 2019: 6 · 2018: 7 · 2017: 3 · 2016: 6 · 2015: 6 · 2014: 5 · 2012: 2
- FWCI
- 4.71
- Type
- journal article
- Language
- en
- Open access
- green
- europepmc.org
- Locations
- Journal of Palliative Medicine (publishedVersion)
- Europe PMC (PubMed Central) (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- Funders
- National Institutes of Health
- National Institute of Nursing Research (R01NR010548)
- 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
- parental bereavement, infant death, complex chronic conditions, grief, social support networks, memory formation, altruism, continuity of care, prenatal diagnosis, multiple pregnancy, socioeconomic status, race, palliative care
- MeSH terms
- Adult, Chronic Disease, Female, Grief, Humans, Infant, Infant, Newborn, Interviews as Topic, Longitudinal Studies, Male, Middle Aged, Parents, Social Support, Terminally Ill, Young Adult
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