Ethical and Logistical Considerations of Multicenter Parental Bereavement Research

Abstract

Background-Multicenter research has the potential to recruit participants with diverse racial, ethnic, and geographic backgrounds and is essential for understanding heterogeneity in bereavement. The National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network (CPCCRN) is a multicenter network charged with conducting research on the pathophysiology and management of critical illness in childhood. Among its research activities, the CPCCRN has undertaken research in parental bereavement because most childhood deaths in the United States occur in hospitals, primarily in critical care units.

Talking With Parents About End-of-Life Decisions for Their Children

“…10,12,[21][22][23]26,27,31,[36][37][38] Our findings indicate that in actual conversations parents act in line with this preference. Most parents in our study made an effort to actively participate in the decision-making process, especially when their initial preferences regarding the course of treatment did not correspond with those of the medical team.…”

“…The factors that support them in coping with the loss of their child have received growing attention. [1][2][3][4][5][6][7][8][9][10][11][12][13][14][15] Recent studies show that most parents find it helpful to share in their child's daily care during the dying process. Most of them also find it helpful to share in decisions to withhold or withdraw lifesustaining treatment (LST), decisions that often precede a child's death.…”

Pediatric Acute Respiratory Distress Syndrome

“…Based on the small number of patients in the pediatric ALI descriptive reports, 6,7 one can conclude that a study of pediatric ALI/ ARDS would require the cooperation of multiple centers, most likely within a larger network such as PALISI, [5][6][7]17,18 the Collaborative Pediatric Critical Care Research Network, [19][20][21][22] or the Australian and New Zealand Intensive Care Society Clinical Trials Group. 2,23,24 The funding and institutional cooperation that such a study would require are quite substantial.…”

Parents Who Have Lost a Child to Cancer: What Do They Really Need?

“…We can suggest that this movement is linked to a frequent tendency among bereaved people: it is easier to seek help for others (for instance children) than for oneself. Some authors also suggested that behind request for helping one's children, there is in fact a request for oneself (Meert et al, 2008). The need for grief support for siblings, expressed by parents, was based on anxious anticipation of impending psychological distress.…”