Supporting infants with severe perinatal diagnoses, their families and healthcare providers: development of a perinatal palliative care program.

BACKGROUND: Perinatal palliative care (PPC) provides essential support for families and healthcare providers at the end-of-life. Despite clear global need, structured PPC programs are not widely established. AIM: To develop a PPC program that supports families confronted with a severe perinatal diagnosis for their (unborn) child, with a focus on evidence-based development of such program, ensuring care is effective, consistent, and aligned with best practices. METHODS: We systematically designed a PPC program following a 7-step method, using Bleijenberg's extended Medical Research Council framework. We conducted a qualitative interview study with 22 healthcare providers and 18 bereaved parents from six hospitals to identify care gaps alongside an integrative review study of international programs. These combined findings informed the development of a PPC prototype program, intended to be integrated in routine practice. Subsequently, we refined the program, identified barriers to implementation, and explored opportunities for contextual tailoring through six participatory workshops involving both healthcare providers and bereaved parents at three hospitals. In these sessions we reviewed the preliminary care components, identified practical challenges, and adapted the model to align with local workflows, staffing realities, and documentation systems. RESULTS: Five core components were developed: 1. Dedicated fixed PPC Team with care coordinators 2. Formal/Specialized 1,5 day training covering essential PPC aspects 3. Stepwise PPC Approach with a structured PPC plan including individualized care pathways and centralized resources and information sharing 4. Proactive psychological support for both families and staff 5. Structured Team Debriefings Key barriers to implementation included fragmented documentation systems, limited staffing and time resources, and challenges in cross-departmental coordination. DISCUSSION: We developed a PPC program based on existing international evidence and current PPC practices. This approach ensured both relevance and practical applicability. The program design is a strength, as it is grounded in evidence and shaped through active involvement of parents and healthcare providers, with attention to contextual tailoring. The program is now ready for pilot testing to assess feasibility and acceptability in clinical practice. Future implementation will require institutional support, contextual adaptation, and ongoing evaluation to ensure sustainable integration into perinatal care.