"I was able to still be her mom"--parenting at end of life in the pediatric intensive care unit.
OBJECTIVE
The death of a child in the pediatric intensive care unit is perhaps one of the most devastating and challenging experiences a parent can ever endure. This article examines how parents of children dying in the pediatric intensive care unit understood their role and discusses implications for clinical care and policy.


METHODS
Retrospective, qualitative study.


METHODS
Two pediatric intensive care units located in children's hospitals within academic medical centers in the northeastern United States.


METHODS
Parents of 18 children who died in the pediatric intensive care unit.


METHODS
Semistructured telephone interviews, digitally recorded and transcribed.


RESULTS
Many of the factors deemed important by the parents related to their capacity to be a "good parent" to their child throughout his or her stay in the pediatric intensive care unit. Specifically, parents sought meaningful ways to express and assert their parenthood across three domains: 1) providing love, comfort, and care; 2) creating security and privacy for the family; and 3) exercising responsibility for what happens to one's child.


CONCLUSIONS
Parents' ability to fulfill the essential features of their role as parents of children dying in the pediatric intensive care unit shapes how they perceive the quality of the experience. Pediatric intensive care unit clinical care and policies can and should uphold and protect these features enabling parents to feel that, despite the outcome, they had done their best on behalf of their children.
Center for Applied Ethics, Education Development Center, Department of Anesthesiology, Children's Hospital Boston, Harvard Medical School, Boston, MA, USA.
Sarah A
SA
McGraw
Robert D
RD
Truog
Mildred Z
MZ
Solomon
Adena
A
Cohen-Bearak
Deborah E
DE
Sellers
Elaine C
EC
Meyer
D000328:Adult; D002648:Child; D002675:Child, Preschool; D005220:Fathers / Q000523:psychology*; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D015278:Intensive Care Units, Pediatric; D007407:Interviews as Topic; D008297:Male; D009035:Mothers / Q000523:psychology*; D016134:Organizational Policy; D010287:Parent-Child Relations; D016487:Parenting; D012189:Retrospective Studies; D013727:Terminal Care; D055815:Young Adult