Priorities for research in perinatal palliative care: an international Delphi study
Abstract Background 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 prio...
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| Language: | English |
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BMC
2025-07-01
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| Series: | BMC Palliative Care |
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| Online Access: | https://doi.org/10.1186/s12904-025-01845-9 |
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| author | Martin Loučka Markéta Zindulková Hana M. Dvořáková Zuzana Staníčková |
| author_facet | Martin Loučka Markéta Zindulková Hana M. Dvořáková Zuzana Staníčková |
| author_sort | Martin Loučka |
| collection | DOAJ |
| description | Abstract Background 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. Objective To identify and establish research priorities for perinatal palliative care (PPC) using a Delphi method with international experts and parents who experienced perinatal loss. Methods 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. Results 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. Conclusions This study identified critical research areas in PPC, providing a roadmap for future research to enhance support for families and healthcare providers in PPC. |
| format | Article |
| id | doaj-art-0c1ecb8face342fab63dbcc733d8c1b4 |
| institution | Kabale University |
| issn | 1472-684X |
| language | English |
| publishDate | 2025-07-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Palliative Care |
| spelling | doaj-art-0c1ecb8face342fab63dbcc733d8c1b42025-08-20T03:46:23ZengBMCBMC Palliative Care1472-684X2025-07-012411710.1186/s12904-025-01845-9Priorities for research in perinatal palliative care: an international Delphi studyMartin Loučka0Markéta Zindulková1Hana M. Dvořáková2Zuzana Staníčková3Center for Palliative CareCenter for Palliative CareDepartment of Obstetrics and Gynecology, Motol University Hospital Prague3rd Faculty of Medicine, Charles UniversityAbstract Background 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. Objective To identify and establish research priorities for perinatal palliative care (PPC) using a Delphi method with international experts and parents who experienced perinatal loss. Methods 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. Results 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. Conclusions This study identified critical research areas in PPC, providing a roadmap for future research to enhance support for families and healthcare providers in PPC.https://doi.org/10.1186/s12904-025-01845-9Perinatal palliative careResearch prioritiesConsensus methodsExpert panelPriority settingBereaved parents |
| spellingShingle | Martin Loučka Markéta Zindulková Hana M. Dvořáková Zuzana Staníčková Priorities for research in perinatal palliative care: an international Delphi study BMC Palliative Care Perinatal palliative care Research priorities Consensus methods Expert panel Priority setting Bereaved parents |
| title | Priorities for research in perinatal palliative care: an international Delphi study |
| title_full | Priorities for research in perinatal palliative care: an international Delphi study |
| title_fullStr | Priorities for research in perinatal palliative care: an international Delphi study |
| title_full_unstemmed | Priorities for research in perinatal palliative care: an international Delphi study |
| title_short | Priorities for research in perinatal palliative care: an international Delphi study |
| title_sort | priorities for research in perinatal palliative care an international delphi study |
| topic | Perinatal palliative care Research priorities Consensus methods Expert panel Priority setting Bereaved parents |
| url | https://doi.org/10.1186/s12904-025-01845-9 |
| work_keys_str_mv | AT martinloucka prioritiesforresearchinperinatalpalliativecareaninternationaldelphistudy AT marketazindulkova prioritiesforresearchinperinatalpalliativecareaninternationaldelphistudy AT hanamdvorakova prioritiesforresearchinperinatalpalliativecareaninternationaldelphistudy AT zuzanastanickova prioritiesforresearchinperinatalpalliativecareaninternationaldelphistudy |