Abstract
OBJECTIVE—To explore parents' experiences of bereavement care after withdrawal of newborn intensive care. DESIGN—Face to face interviews with 108 parents of 62 babies born over two calendar years in the East of Scotland. RESULTS—Only 22% were seen by six weeks after the death, 10% were not recalled before 6-11 months, and 8% were not seen at all in the first year. All except one couple saw the neonatologist who had cared for their baby. Only 33% remembered a neonatal nurse being present. Most (88%) were seen in the study hospital. Parents highlighted a number of specific needs. Appointments should be: (a) scheduled soon after the death of the baby and certainly within two months of the death irrespective of whether or not autopsy results are available; (b) with the named neonatologist; (c) in a setting away from the hospital if possible. Parents value: (a) efforts to find out how they are coping; (b) full frank information given sensitively to enable them to build up a cohesive picture of what happened and assess their future risks; (c) reassurance where possible, but half truths, false reassurances, and broken promises are unacceptable. CONCLUSIONS—Follow up care is a crucial part of the management of families from whose babies treatment has been withdrawn. Resources devoted to it should be re-examined to provide a service more in tune with parental need. In choosing the place, timing, and conduct of the meeting, staff should be sensitive to the expressed wishes of the parents themselves.
Full Text
The Full Text of this article is available as a PDF (124.3 KB).
Selected References
These references are in PubMed. This may not be the complete list of references from this article.
- Chitty L. S., Barnes C. A., Berry C. Continuing with pregnancy after a diagnosis of lethal abnormality: experience of five couples and recommendations for management. BMJ. 1996 Aug 24;313(7055):478–480. doi: 10.1136/bmj.313.7055.478. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Fox R., Pillai M., Porter H., Gill G. The management of late fetal death: a guide to comprehensive care. Br J Obstet Gynaecol. 1997 Jan;104(1):4–10. doi: 10.1111/j.1471-0528.1997.tb10639.x. [DOI] [PubMed] [Google Scholar]
- Hazzard A., Weston J., Gutterres C. After a child's death: factors related to parental bereavement. J Dev Behav Pediatr. 1992 Feb;13(1):24–30. [PubMed] [Google Scholar]
- MacGregor P. Grief: the unrecognized parental response to mental illness in a child. Soc Work. 1994 Mar;39(2):160–166. [PubMed] [Google Scholar]
- Neidig J. R., Dalgas-Pelish P. Parental grieving and perceptions regarding health care professionals' interventions. Issues Compr Pediatr Nurs. 1991 Jul-Sep;14(3):179–191. doi: 10.3109/01460869109014497. [DOI] [PubMed] [Google Scholar]
- Zeanah C. H. Adaptation following perinatal loss: a critical review. J Am Acad Child Adolesc Psychiatry. 1989 Jul;28(4):467–480. doi: 10.1097/00004583-198907000-00001. [DOI] [PubMed] [Google Scholar]