Development and Feasibility Evaluation of a Family-Centred Neonatal End-of-Life Care Protocol

Abstract

Aim: To develop a family-centred end-of-life care protocol and evaluate its feasibility. Design: The draft protocol was created by integrating literature review results and existing protocols and interviewing bereaved parents. A Delphi study and an experts' review were conducted to refine the draft, followed by feasibility testing with neonatal intensive care unit nurses. Results: A 71-item protocol based on an integrated end-of-life care model and the family-centred care concept was developed, comprising three sections: principal guidelines, communication during end-of-life care and five substeps (4, 17 and 71 items, respectively) according to changes in an infant's condition. The feasibility was confirmed by an increase in competency and a positive attitude towards infant end-of-life care participants who completed the protocol education. Conclusion: The protocol was feasible and improved nurses' competency and attitude in providing end-of-life care for infants and parents requiring support due to the loss of their infants. It can positively impact the well-being of parents who have experienced the loss of their infants in neonatal intensive care units and enhance family-centred care within the units. Implications for the Profession and/or Patient Care: Application of the family-cantered end-of-life care could support infants' dying process and improve bereaved parents' quality of life in neonatal intensive care units. Impact: This study increased neonatal end-of-life nursing needs' awareness among nurses and parents during bereavement. It offered preliminary evidence regarding the feasibility of a neonatal end-of-life care protocol developed in this study. Reporting Method: AGREE Reporting Checklist 2016. Patient or Public Contribution: We interviewed bereaved parents to develop the draft protocol and involved neonatal care experts for the Delphi study and neonatal nurses (who would use the protocol) as feasibility test subjects.