Open AccessParents’ Wishes for What They Had or Had Not Done and Their Coping After Their Infant’s or Child’s Neonatal Intensive Care Unit/Pediatric Intensive Care Unit/Emergency Department Death
Author(s) -
Carmen Caicedo,
Dorothy Brooten,
JoAnne M. Youngblut,
Julia Dankanich
Publication year - 2019
Publication title -
journal of hospice and palliative nursing
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.457
H-Index - 23
eISSN - 1539-0705
pISSN - 1522-2179
DOI - 10.1097/njh.0000000000000559
Subject(s) - blame , medicine , coping (psychology) , neonatal intensive care unit , child care , family medicine , qualitative research , intensive care , nursing , pediatrics , psychiatry , intensive care medicine , social science , sociology
This qualitative study asked 70 mothers and 26 fathers 3 open-ended questions on what they wish they had and had not done and on coping 2, 4, 6, and 13 months after their infant's/child's neonatal intensive care unit/pediatric intensive care unit/emergency department death. Mothers wished they spent more time with the child, chosen different treatments, advocated for care changes, and allowed the child his or her wishes. Fathers wished they had spent more time with the child and gotten care earlier. Mothers wished they had not agreed to child's surgery/treatment, taken her own actions (self-blame), and left the hospital before the death. Fathers wished they had not been so hard on the child, agreed with doctors/treatment, and taken own actions (self-blame). Religious activities, caring for herself, and talking about/with the deceased child were the most frequent mothers' coping strategies; those of the fathers were caring for self and religious activities. Both mothers and fathers wished they had spent more time with their child and had not agreed to surgery/treatments. The most frequent coping was caring for themselves, likely to care for the family and retain employment. Nurses must be sensitive to parents' need for time with their infant/child before and after death and to receive information on child's treatments at levels and in languages they understand.