Death and bereavement in a paediatric intensive care unit: Parental perceptions of staff support

OBJECTIVES: To determine which staff behaviours and interventions were helpful to a family who had a child die in the intensive care unit (ICU) and which behaviours could be improved. METHODS: Families whose child died six to 18 months earlier were invited to participate. Families whose child's death involved a coroner's inquiry were excluded. Family members were interviewed by a grief counselor, and completed the Grief Experience Inventory Profile and an empirically designed questionnaire. RESULTS: No family refused to participate. All family members (13 families, 24 individuals) reported that they wanted, were offered and had: time to be alone with their child, time to hold the child, chances to discuss their feelings, and an opportunity to cry and express their emotions openly. Tangible mementos of the child were appreciated. Support provided by nursing staff was rated as excellent. Some physicians appeared to be abrupt, cold and unfeeling. Hospital social workers and chaplains, when available, were appreciated. Parents valued access to private space and holding their child, but these options needed to be suggested, as they did not know to ask for them. Some families wanted more information about funeral arrangements; most wanted more timely information about autopsy results and feedback on organ donations. Follow-up contact from the hospital about four weeks after the death was valued. Families saw the study as an opportunity to provide feedback that may help others. CONCLUSIONS: Many acute bereavement interventions need to be initiated by staff because families do not know to request them. Physicians do not always meet individual family's needs for support. Contact initiated by staff following a death is appreciated.