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

Martin Loučka1,2, Markéta Zindulková3, Hana M Dvořáková4

  • 1Center for Palliative Care, Dykova 1165/15, Prague, 101 00, Czech Republic. m.loucka@paliativnicentrum.cz.

BMC Palliative Care
|July 16, 2025
PubMed

Insights

This study established research priorities for perinatal palliative care (PPC) by surveying experts and bereaved parents. The findings provide a roadmap for future research to improve care for families facing life-limiting conditions.

Area of Science:

  • Perinatal Medicine
  • Palliative Care Research
  • Healthcare Priority Setting

Background:

  • Perinatal palliative care (PPC) is crucial for families with life-limiting fetal or neonatal conditions.
  • Current PPC practices lack systematically defined research priorities.
  • Evidence-based PPC development requires structured research agendas.

Purpose of the Study:

  • To identify and establish research priorities for perinatal palliative care (PPC).
  • Utilized a Delphi method involving international experts and parents experiencing perinatal loss.
  • Aimed to guide future research and enhance PPC practices.

Main Methods:

  • Employed a three-round Delphi survey with experts and bereaved parents.
  • Research topics were generated, analyzed thematically, and ranked by consensual scoring.
  • Consensus was defined as a score above the mean from at least 75% of respondents.

Main Results:

  • 187 research priorities were initially suggested, with 34 reaching consensus.
  • Key priority areas include care organization, decision-making, communication, staff support, ethics, symptom management, bereavement, and family experience.
  • The study involved 125 experts and 10 parents, with response rates of 24%, 31%, and 34% across rounds.

Conclusions:

  • Identified critical research areas for perinatal palliative care (PPC).
  • Provides a roadmap for future research to enhance support for families and healthcare providers.
  • Emphasizes the need for evidence-based practices in PPC.
Abstract

Keywords:
Bereaved parentsConsensus methodsExpert panelPerinatal palliative carePriority settingResearch priorities

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