Perceptions and needs of NICU professionals regarding pediatric palliative care: a qualitative study compared with international literature

Abstract

Background: Pediatric palliative care (PPC) in neonatal intensive care units (NICU) presents ethical and emotional challenges for healthcare professionals. This study explores perceptions, experiences, and needs of NICU staff concerning PPC in the context of implementing collaboration with a pediatric palliative care reference center (PPCRC). Methods: A qualitative descriptive study using a semi-structured questionnaire was conducted among NICU professionals. Among 91 staff, 26 complete responses were thematically analyzed. Results were compared with international literature. Results: Respondents highlighted emotional distress, communication challenges, need for ethical guidance, training gaps, and a desire for stronger integration of PPC teams. The collaboration with PPCRC was perceived as helpful by many, although underutilized by some. Conclusion: NICU professionals face significant moral and emotional burdens in PPC. Strengthening training, enhancing team cohesion, and promoting earlier PPC integration may improve both care quality and staff well-being.