Priorities for research in perinatal palliative care: an international Delphi study

Perinatal palliative care (PPC) addresses the complex needs of families facing life-limiting fetal or neonatal conditions through an interdisciplinary, family-centered approach. Despite growing recognition of its importance, there is a lack of systematically defined research priorities to guide the development of evidence-based PPC practices.

To identify and establish research priorities for perinatal palliative care (PPC) using a Delphi method with international experts and parents who experienced perinatal loss.

This Delphi study involved three Delphi survey rounds with experts and bereaved parents. Participants provided and refined research priorities across rounds. In the first round, participants provided suggestions for research topics spontaneously. Topics were analyzed using principles of thematic analysis and further rated and ranked based on their importance in two additional rounds of consensual scoring. Consensus was defined as a score above the mean from at least 75% of respondents.

A total of 125 experts and 10 parents who experienced a perinatal loss were invited to participate in the study. Response rate in the three rounds was 24, 31, and 34%. A total of 187 research priorities were initially suggested, resulting in 34 topics reaching consensus. Final rankings and priority topics were categorized into seven thematic areas: organization of care, decision-making and communication, staff support and education, ethics, symptom management, bereavement, and family experience.

This study identified critical research areas in PPC, providing a roadmap for future research to enhance support for families and healthcare providers in PPC.