The end-of-life spiritual care service package in the Newborn intensive care unit(S)

Abstract

Objectives: Despite current advances in child care scientific models, most children are at risk of dying in the neonatal period or immediately before delivery. Parents experience deep pain and suffering because of the death of their infant. Several studies mentioned that the most agonizing experience in the parents’ life is their child’s death which causes them extreme suffering and could remain fresh even many years after the infant’s death. Researchers’ experiences revealed that, families after their infant’s death in the Newborn Intensive Care Unit (NICU), did not receive appropriate end-of life and spiritual support care. The aim of this study was to provide a service package of spiritual care at the end of life in the NICU to support infants and families. Methods: This study was approved by organizational ethics committee No.393, 003. In this research, triangulation method was used in four phases. The method of the initial phase of study was qualitative content analysis to explore the spiritual needs of families with an infant in his/her end of life in the NICU. The second phase of study was done by review of the literature to develop the primary draft of the service package based on the categories of the initial phase. In the third phase, the primary draft of the service package was reviewed and revised by experts from different areas of a Muslim country who attended different expert panel sessions with the support of the Neonatal Health Office in the Ministry of Health (NHOIMOH). In the fourth phase, we calculated the mean score of the applicability of the service package’s recommendations in clinical settings from the perspective of nurses in the NICU. Results: The qualitative phase of the study revealed six main themes of a family’s spiritual needs in the end of life of an infant in the NICU(s) including: human dignity for newborn; need to comfort the soul; spiritual belief in supernatural power; supportive and preparation needs in the infant’s death; reliance on information and communication needs; spiritual and compassionate care needs for infant and family. In the literature review phase we searched and accessed 2147 related articles and finally carefully chose and analyzed 55 more related articles to prepare service package’s draft. Finally, based on the results of qualitative and quantitative phases the service package was prepared in three sections including: the spiritual end-of-life care for Infant; spiritual care for infant’s family in NICU; and spiritual care for family in bereavement. Conclusions: According to the results of this study we recommend implementation of this culture based service package in the national NICU(s) with support of NHOIMOH, and other NICU(s) in the world with the same cultures to assess end-of-life spiritual needs of infants and families in NICU(s) and to provide best and appropriate care for them based on this clinical guideline.