Publication
Parents' and nurses' experiences of end-of-life care in intensive care for children: A systematic review
Bloomer M, Butler A, Brooks L, Coventry A, McKeever S, Ranse K, Rowe J, Thomas S, Thornton R · Australian Critical Care · 2025
Background: The provision of end-of-life care for children in intensive care is a stressful and traumatic event for parents with immediate and life-long impacts. End-of-life care for children is also challenging for critical care nurses who must balance the child's clinical requirements concurrently with facilitating and supporting the needs of parents and family members. Research question: What is the research evidence about nurses' and parents' experiences of the provision of end-of-life care in intensive care for children? Review methods: Following registration with the International Prospective Register of Systematic Reviews, a systematic review was undertaken. A combination of keywords, synonyms, and Medical Subject Headings were used across Cumulative Index for Nursing and Allied Health (CINAHL) Complete, Medline, and APA PsycInfo databases. Papers were independently assessed against inclusion and exclusion criteria. Included papers were assessed for quality. Narrative synthesis was used to analyse and present the findings. Findings: From 40,904 records screened, 55 research publications were included, representing the perspectives of nurses, mothers, fathers, extended family, and legal guardians. Narrative synthesis revealed seven themes identified from the nurse and parent experiences: (i) communication; (ii) end-of-life decision-making; (iii) suffering; (iv) preparing for death; (v) at the end of life; (vi) after death; and (vii) nurse impacts. While there was mostly concordance between nurse and parent experiences, there was some discord between parents' communication needs and nurses' understanding of their role in communication. This review also highlighted how nurses commit to supporting parents in their grief and bereavement while concurrently managing their own emotions in response to a child's death. Conclusion: A child's death cannot always be prevented. By exploring nurses' and parents' experiences of end-of-life care, as they occur simultaneously and in parallel, it is possible to build understanding and evolve practices to improve the experience of end-of-life care for children for all involved.
Synced from the TRENDS in Pediatric Palliative Care Zotero library, curated by The Siden Research Team. ICPCN does not host or verify the full text.