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

Abstract

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.

Parents' experiences of healthcare provider actions when their child dies: An integrative review of the literature

“…Eleven of the 15 articles addressed parents' perceptions of staff attitude or affect at some point during the child's death (Abib El Halal et al., ; Bright et al., ; Brooten et al., ; Heller & Solomon, ; James & Johnson, ; Macnab et al., ; Meert et al., , ; Meyer et al., ; Neidig & Dalgas‐Pelish, ; Widger & Picot, ). Of these, seven articles identified aspects of staff affect or attitudes that were viewed as helpful by parents.…”

“…In contrast, seven articles identified aspects of staff member attitude and affect that were unhelpful or detrimental to parents' experiences (Abib El Halal et al., ; Bright et al., ; Brooten et al., ; Macnab et al., ; Meert et al., ; Meyer et al., ; Neidig & Dalgas‐Pelish, ). Parents consistently identified a cold, non‐caring and clinical demeanour as particularly unhelpful, leading to increased emotional pain, and they often identified medical staff as most likely to display such an attitude, especially in the PICU (Abib El Halal et al., ; Bright et al., ; Macnab et al., ; Meert et al., ). Bright and colleagues (), in their study of bereaved parents' interactions with medical staff, found that the pain and distress caused by cold and clinical physicians remained with parents for years after the child's death and gave the impression that the medical staff did not care about the deceased children or their families.…”

“…Ten studies made some mention of follow‐up care or ongoing contact between parents and hospital staff (Bright et al., ; Darbyshire et al., ; deCinque et al., ; Heller & Solomon, ; James & Johnson, ; Macdonald et al., ; Macnab et al., ; Meert et al., ; Neidig & Dalgas‐Pelish, ; Widger & Picot, ) and referred to actions such as phone calls or cards from staff, funeral attendance, nurse run bereavement follow‐up services and memorial services. There were very limited data available that described the frequency of ongoing contact between hospital staff members and parents.…”

“…Macnab and colleagues () identified that families' contact with hospital staff after the death of a child in PICU ranged from none (3 families out of 13) to ongoing, regular contact (1 family). Contact with the family after the death of a child included receiving cards or letters, phone calls from staff and staff's presence at the funeral of the child (Bright et al., ; Darbyshire et al., ; Heller & Solomon, ; Macdonald et al., ; Meert et al., ; Neidig & Dalgas‐Pelish, ).…”

“…Out of the 15 studies appraised, 8 studies failed to appropriately delineate or justify their research design (Abib El Halal et al., ; Bright, Belew Huff, & Hollon, ; Brooten et al., ; James & Johnson, ; Meert et al., ; Meert, Briller, Schim, Thurston, & Kabel, ; Meyer, Ritholz, Burns, & Truog, ; Widger & Picot, ). Ten studies either inadequately discussed the researcher's impact on the research process (Abib El Halal et al., ; Brooten et al., ; Heller & Solomon, ; Meert et al., ) or failed to discuss the concept at all (Bright et al., ; Darbyshire et al., ; deCinque et al., ; Janzen, Cadell, & Westhues, ; Macnab, Northway, Ryall, Scott, & Straw, ; Widger & Picot, ), despite the fact that the primary researcher from one study was also a bereaved parent (Janzen et al., ) or that the research was conducted in the author's own workplace (Macnab et al., ). Two studies poorly described their recruitment processes (Darbyshire et al., ; Meyer et al., ), one had almost no discussion of their data collection (Bright et al., ) and six studies inadequately described their data analysis processes (Abib El Halal et al., ; Bright et al., ; Macdonald et al., ; Macnab et al., ; Neidig & Dalgas‐Pelish, ; Widger & Picot, ).…”