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Infant end-of-life care: the parents' perspective. J Perinatol 2007 Aug;27(8):510-6

Date

04/20/2007

Pubmed ID

17443196

DOI

10.1038/sj.jp.7211755

Scopus ID

2-s2.0-34547527832 (requires institutional sign-in at Scopus site)   125 Citations

Abstract

OBJECTIVE: The purpose of this study was to identify factors important to parents in their infant's end-of-life care.

STUDY DESIGN: Participants were parents (n=19 families) whose infant (less than 1 year old) had died. Parents completed the Revised Grief Experience Inventory (RGEI) and a semi-structured interview regarding their infant's end-of-life care. Interviews were rated using the Post-Death Adaptation Scale (PDAS).

RESULTS: Parents scored significantly lower than the normative sample on the RGEI, and PDAS scores suggested that these parents were adapting positively. Parent interviews identified the aspects of care that were important to parents: honesty, empowered decision-making, parental care, environment, faith/trust in nursing care, physicians bearing witness and support from other hospital care providers.

CONCLUSIONS: Results of this study suggest that parents can effectively cope following the death of an infant and the medical staff can do much to improve the end-of-life care for infants and their families.

Author List

Brosig CL, Pierucci RL, Kupst MJ, Leuthner SR

Authors

Cheryl L. Brosig Soto PhD Chief, Professor in the Pediatrics department at Medical College of Wisconsin
Steven R. Leuthner MD Professor in the Pediatrics department at Medical College of Wisconsin




MESH terms used to index this publication - Major topics in bold

Adaptation, Psychological
Adult
Bereavement
Female
Grief
Humans
Infant
Infant, Newborn
Male
Parents
Self-Help Groups
Spirituality
Terminal Care