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.

Trial registration: This was a doctoral dissertation and did not require protocol registration as the feasibility test involved a single neonatal intensive care unit.

Keywords: intensive care units; neonatal end‐of‐life care; nursing protocol; palliative care; parents.