Perspectives From Bereaved Parents on Improving End of Life Care in the NICU

Although improving end-of-life (EOL) care for children and their families is a national priority (American Academy of Pediatrics, Committee on Bioethics and Committee on Hospital Care, 2000; Institute of Medicine, 2003), research in the neonatal intensive care unit (NICU) is limited. To improve care...

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Bibliographic Details
Published in:Clinical practice in pediatric psychology 2017-12, Vol.5 (4), p.392-403
Main Authors: Baughcum, Amy E, Fortney, Christine A, Winning, Adrien M, Shultz, Emily L, Keim, Madelaine C, Humphrey, Lisa M, Schlegel, Amy B, Gerhardt, Cynthia A
Format: Article
Language:English
Subjects:
Bereavement
Fathers
Female
Human
Male
Mothers
Neonatal Intensive Care
Palliative Care
Parents
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Summary:Although improving end-of-life (EOL) care for children and their families is a national priority (American Academy of Pediatrics, Committee on Bioethics and Committee on Hospital Care, 2000; Institute of Medicine, 2003), research in the neonatal intensive care unit (NICU) is limited. To improve care, there is a critical need to understand the experiences of these infants and their caregivers. Therefore, we conducted a retrospective study to examine parent perceptions of their infants' care at EOL in the NICU between 3 months and 5 years of their infant's death (M = 38.10 months, SD = 16.87). As part of this pilot study, 29 mothers and 16 fathers representing 31 infants participated in qualitative interviews assessing parents' satisfaction with their involvement in their infants' care and decision-making and their advice to NICU providers. Four themes emerged from interview data, including parents as partners in care, communication with the health-care team, relationships with staff, and bereavement support. Both mothers and fathers generally felt positive about their role in treatment decisions, relationships with staff, and memory-making activities. Parents noted areas for improvement, including team communication, anticipatory guidance, family inclusion at bedside, and bereavement care. This study provides a deeper understanding of parents' experience with their infants at EOL and highlights opportunities for enhancing care. Pediatric psychologists can play an important role in facilitating communication between parents and the health-care team as well as providing bereavement support for these vulnerable families.
ISSN:2169-4826
2169-4834
DOI:10.1037/cpp0000221