Secondary Logo

Journal Logo

Institutional members access full text with Ovid®

Parents’ 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

Caicedo, Carmen PhD; Brooten, Dorothy PhD, FAAN; Youngblut, JoAnne M. PhD, FAAN; Dankanich, Julia BSN, BS

Journal of Hospice & Palliative Nursing: August 2019 - Volume 21 - Issue 4 - p 333–343
doi: 10.1097/NJH.0000000000000559
Feature Articles
Buy

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.

Carmen Caicedo, PhD, is assistant professor, Nicole Wertheim College of Nursing & Health Sciences, Florida International University, Miami.

Dorothy Brooten, PhD, FAAN, is professor, Nicole Wertheim College of Nursing & Health Sciences, Florida International University, Miami.

JoAnne M. Youngblut, PhD, FAAN, is Dr. Herbert & Nicole Wertheim professor, Nicole Wertheim College of Nursing & Health Sciences, Florida International University, Miami.

Julia Dankanich, BSN, BS, is research assistant, Nicole Wertheim College of Nursing & Health Sciences, Florida International University, Miami.

Address correspondence to Carmen Caicedo, PhD, Nicole Wertheim College of Nursing and Health Sciences, AHC 3, Rm 326, Florida International University, 11200 SW 8th St, Miami, FL 33199 (ccaicedo@fiu.edu).

Author Contributions: Dorothy Brooten and JoAnne M. Youngblut conducted the study. Carmen Caicedo participated in the study conduct. All 3 worked on the manuscript content analysis and did the first draft of the manuscript. Julia Dankanich conducted data entry from the participants’ research files, reviewed, and made revisions to the manuscript.

Work was performed at Nicole Wertheim College of Nursing and Health Sciences, Florida International University.

The authors have no conflicts of interest to disclose.

The study was funded by National Institute of Nursing Research, National Institutes of Health, R01 NR012675.

Online date: April 1, 2019

© 2019 by The Hospice and Palliative Nurses Association.