Nurses’ perspectives on implementing pediatric palliative care: a qualitative participatory study on the emerging role of the advanced practice nurse

TL;DR

This study explores how nurses in a hospital in Austria experience and cope with implementing pediatric palliative care, highlighting the need for better support and training.

Contribution

The study provides new qualitative insights into nurses' challenges and needs during early implementation of pediatric palliative care.

Findings

Nurses reported emotional burden and conceptual uncertainty during early implementation of PPC.

Nurses lacked structured training and identified a need for advanced nursing expertise.

Prior informal experience with life-limiting conditions did not provide a shared framework for PPC.

Abstract

The implementation of Pediatric Palliative Care (PPC) in hospital settings places considerable demands on nursing staff, particularly during early phases of change. This study explored nurses’ experiences, attitudes, and perceived support needs during the early implementation of a PPC concept at a tertiary pediatric hospital in Austria. A qualitative participatory design was applied. Four moderated focus group discussions were conducted with 18 registered nurses working on two pediatric wards where PPC beds were newly introduced. Data were audio-recorded, transcribed verbatim, and analyzed using Braun and Clarke’s thematic analysis. Four themes were identified: experiences with PPC, PPC as a new model of care, challenges of implementation, and expectations toward PPC. Nurses reported emotional burden, conceptual uncertainty, and limited opportunities for structured training and reflection. Although many participants had prior experience caring for children with life-limiting conditions, these experiences were largely informal and lacked a shared framework. Nurses articulated a strong need for accessible support structures and identified the absence of advanced nursing expertise as a key gap during early PPC implementation.
Conclusion: Nurses’ experiences underscore the importance of structured support, conceptual clarity, and emotional resources during early PPC implementation. The articulated need for advanced nursing expertise emerged inductively as a support requirement rather than an evaluation of an existing role and may inform future implementation and role development strategies.
What is Known:• Pediatric Palliative Care is frequently misunderstood as synonymous with end-of-life care.• Implementing Pediatric Palliative Care in hospital settings requires complex organizational change.What is New:• This qualitative study provides in-depth insight into nurses’ experiences during the early implementation of Pediatric Palliative Care in a tertiary pediatric hospital.• Although nurses had prior informal experience caring for children with life-limiting conditions, PPC was perceived as both familiar and novel due to the absence of a shared conceptual framework, leading to emotional burden, conceptual uncertainty, and unmet needs for structured support, including accessible advanced nursing expertise.

What is Known:

• Pediatric Palliative Care is frequently misunderstood as synonymous with end-of-life care.

• Implementing Pediatric Palliative Care in hospital settings requires complex organizational change.

What is New:

• This qualitative study provides in-depth insight into nurses’ experiences during the early implementation of Pediatric Palliative Care in a tertiary pediatric hospital.

• Although nurses had prior informal experience caring for children with life-limiting conditions, PPC was perceived as both familiar and novel due to the absence of a shared conceptual framework, leading to emotional burden, conceptual uncertainty, and unmet needs for structured support, including accessible advanced nursing expertise.

The online version contains supplementary material available at 10.1007/s00431-026-06790-0.