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Parental experiences of end-of-life decision making in Neonatal Intensive Care Unit: A systematic review and qualitative data synthesis

Ma Y, Gao J, Zhang C, Zhang L, Lu L · Patient Education and Counseling · 2025

Clinical focusDecision-making
MethodologyQualitative

Objective: This systematic review and meta-synthesis aimed to explore the experiences of parents making end-of-life decisions in Neonatal Intensive Care Unit (NICU). Methods: We searched nine databases up to December 2023, including qualitative studies focused on parents' experiences with end-of-life decisions in NICU. Methodological quality was assessed using the Joanna Briggs Institute critical appraisal tool for qualitative research. A thematic synthesis approach was used for data analysis. Results: Nine studies were ultimately included. Four themes were identified: Roles in Decision-Making, Factors Influencing Decision-Making, Decision-Making Trade-offs, and Emotional Experience. Conclusion: This meta-synthesis indicates that factors influencing parents' end-of-life decisions in NICU are complex and challenging. This provides evidence for the development of interventions for end-of-life decision-making, suggesting that these challenges should be carefully addressed to reduce the stress associated with this process. Implications for practice: The findings will assist healthcare providers in considering the spectrum of parental perspectives in end of life decision making and provide guidance for the development of decision aids.

DOI
10.1016/j.pec.2024.108546

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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.