"Leave No Question Unanswered": Nurses' Role in Preparing Children's Families During End-of-Life Care.

Abstract

Background: Parents who report feeling prepared for symptoms and circumstances around their child's end of life report less adverse bereavement outcomes. Yet, the actions that bedside clinicians can initiate to help families feel prepared for a child's death remain unclear.

Objectives: To identify actions that nurses engage in to prepare families for the dying process.

Methods: A deductive approach was used to analyze qualitative data from focus groups and interviews with 20 pediatric intensive care unit nurses.

Results: Most of the 20 nurse participants identified as White women (n = 17; 85%). They reported a broad range of pediatric intensive care unit experience (1-24 years), and most (n = 17; 85%) had cared for at least 10 patients nearing end of life. The study included 3 categories of preparatory actions: leveraging experience and familiarity (processes nurses used to ready themselves to support families navigating end-of-life care), coordinating collaborative team support (optimizing interprofessional teamwork and developing adaptable care plans), and titrating family-responsive support (adjusting interactions or behaviors based on the family's needs).

Conclusions: Combining nurse experience and familiarity, clinical team collaborations, and family-responsive support may offer a comprehensive approach to preparing families of children nearing end of life. Studying end-of-life preparation with larger samples of nurses and families is necessary. Nurses may incorporate these actions into their serious illness care to help support families of children nearing end of life.