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EOLinPLACE

2024-01-01Artigo científico Acesso aberto
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dc.contributor.authorNamukwaya, Elizabeth
dc.contributor.authorde Sousa, Andrea Bruno
dc.contributor.authorLopes, Sílvia
dc.contributor.authorTouwen, Dorothea Petra
dc.contributor.authorvan der Steen, Jenny Theodora
dc.contributor.authorBélanger, Emmanuelle
dc.contributor.authorBrooks, Joanna
dc.contributor.authorYghemonos, Stecy
dc.contributor.authorSehmi, Kawaldip
dc.contributor.authorGomes, Barbara
dc.contributor.institutionComprehensive Health Research Centre (CHRC) - Pólo ENSP
dc.contributor.institutionCentro de Investigação em Saúde Pública (CISP/PHRC)
dc.contributor.institutionEscola Nacional de Saúde Pública (ENSP)
dc.contributor.pblSAGE Publications
dc.date.accessioned2024-07-17T22:20:34Z
dc.date.available2024-07-17T22:20:34Z
dc.date.issued2024-01-01
dc.descriptionFunding Information: The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The research project \u2018EOLinPLACE: Choice of where we die: a classification reform to discern diversity in individual end of life pathways\u2019 has received funding from the European Research Council (ERC) under the European Union\u2019s Horizon 2020 research and innovation programme (grant agreement no. 948609). Publisher Copyright: © The Author(s), 2024.
dc.description.abstractBackground: Whenever possible, a person should die where they feel it is the right place to be. There is substantial global variation in home death percentages but it is unclear whether these differences reflect preferences, and there are major limitations in how the place of death is classified and compared across countries. Objectives: EOLinPLACE is an international interdisciplinary research project funded by the European Research Council aiming to create a solid base for a ground-breaking international classification tool that will enable the mapping of preferred and actual places towards death. Design: Mixed-methods observational research. Methods and analysis: We combine classic methods of developing health classifications with a bottom-up participatory research approach, working with international organizations representing patients and informal carers [International Alliance of Patients’ Organizations (IAPO) and Eurocarers]. First, we will conduct an international comparative analysis of existing classification systems and routinely collected death certificate data on place of death. Secondly, we will conduct a mixed-methods study (ethnography followed by longitudinal quantitative study) in four countries (the Netherlands, Portugal, Uganda and the United States), to compare the preferences and experiences of patients with life-threatening conditions and their families. Thirdly, based on the generated evidence, we will build a contemporary classification of dying places; assess its content validity through focus groups with patients, carers and other stakeholders; and evaluate it in a psychometric study to examine construct validity, reliability, responsiveness, data quality and interpretability. Ethics: Approved by the ethics committee of the University of Coimbra, Faculty of Medicine (CE-068-2022) and committees in each of the participating countries. Discussion: The findings will provide a deeper understanding of the diversity in individual end-of-life pathways. They will enable key developments such as measurement of progress towards achievement of preferences when care can be planned. The project will open new directions in how to care for the dying. Trial registration: Research Registry UIN 9213.en
dc.description.versionpublishersversion
dc.description.versionpublished
dc.format.extent408165
dc.identifier.doi10.1177/26323524231222498
dc.identifier.issn2632-3524
dc.identifier.otherPURE: 95438874
dc.identifier.otherPURE UUID: 81af9c3f-2e9a-4b97-9d23-f220b4f6af85
dc.identifier.otherScopus: 85196320288
dc.identifier.otherWOS: 001161286000001
dc.identifier.otherPubMed: 38357678
dc.identifier.otherPubMedCentral: PMC10865961
dc.identifier.otherORCID: /0000-0002-6048-396X/work/163844752
dc.identifier.urihttp://hdl.handle.net/10362/169745
dc.identifier.urlhttps://www.scopus.com/pages/publications/85196320288
dc.language.isoeng
dc.peerreviewedyes
dc.subjectclassification
dc.subjectdeath
dc.subjectdeath certificates
dc.subjectmortality
dc.subjectpalliative care
dc.subjectpatient preference
dc.subjectterminal care
dc.subjectAdvanced and Specialised Nursing
dc.titleEOLinPLACEen
dc.title.subtitlean international research project to reform the way dying places are classified and understooden
dc.typejournal article
degois.publication.titlePalliative Care and Social Practice
degois.publication.volume18
dspace.entity.typePublication
rcaap.rightsopenAccess

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