Journal de recherche et de développement en éducation à la santé

Parental support systems during end-of-life care of their newborns

Abstract

Keren-Happuch Twumasiwaa Boateng, Vida Nyagre Yakong, Nicholas L. Yombei

Background: The progress made in neonatal intensive care delivery worldwide has resulted in optimal health outcomes of neonates, however, newborns and infants still die. The infants and newborns who die, majority of them die in Neonatal Intensive Care Units (NICU). The experiences of many parents following a poor prognosis of their newborns requiring end of life care suggest that parents usually need support from health care professionals who render direct services to their child, however, the extent and nature of this support is perceivably unknown. Purpose: The purpose of this study was therefore to explore parents’ lived experiences of support at NICU in Tamale Teaching Hospital (TTH). Methodology: Using an exploratory descriptive design, a semi-structured interview guide was used to collect data. Ethical approval was sought from TTH ethics review committee which is the final authority to give approval for the data collection. Purposive and convenience sampling was used to select eight (8) parents to inform the study. The participating parents completed an informed consent form prior to their participation in an interview. The results were analyzed using thematic analysis. Key findings: Effective communication and the provision of continuous, concise and complete information about child’s condition were important to parents during the end-of-life care (EoLC) of their newborns in the NICU; Parental support in terms of information and communication, emotional, psychological and spiritual support, as shared decision-making are essential for quality EoLC at the TTH. Recommendations: Accommodation should be provided for parents of babies on NICU admission. Support groups should be formed to assist parents of babies receiving EoLC.