EOLinPLACE

Bibliographic Details
Main Author: Namukwaya, Elizabeth
Publication Date: 2024
Other Authors: de Sousa, Andrea Bruno, Lopes, Sílvia, Touwen, Dorothea Petra, van der Steen, Jenny Theodora, Bélanger, Emmanuelle, Brooks, Joanna, Yghemonos, Stecy, Sehmi, Kawaldip, Gomes, Barbara
Format: Article
Language: eng
Source: Repositórios Científicos de Acesso Aberto de Portugal (RCAAP)
Download full: http://hdl.handle.net/10362/169745
Summary: Funding 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.
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spelling EOLinPLACEan international research project to reform the way dying places are classified and understoodclassificationdeathdeath certificatesmortalitypalliative carepatient preferenceterminal careAdvanced and Specialised NursingFunding 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.Background: 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.Comprehensive Health Research Centre (CHRC) - Pólo ENSPCentro de Investigação em Saúde Pública (CISP/PHRC)Escola Nacional de Saúde Pública (ENSP)RUNNamukwaya, Elizabethde Sousa, Andrea BrunoLopes, SílviaTouwen, Dorothea Petravan der Steen, Jenny TheodoraBélanger, EmmanuelleBrooks, JoannaYghemonos, StecySehmi, KawaldipGomes, Barbara2024-07-17T22:20:34Z2024-01-012024-01-01T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/10362/169745eng2632-3524PURE: 95438874https://doi.org/10.1177/26323524231222498info:eu-repo/semantics/openAccessreponame:Repositórios Científicos de Acesso Aberto de Portugal (RCAAP)instname:FCCN, serviços digitais da FCT – Fundação para a Ciência e a Tecnologiainstacron:RCAAP2024-07-22T01:39:15Zoai:run.unl.pt:10362/169745Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireinfo@rcaap.ptopendoar:https://opendoar.ac.uk/repository/71602025-05-28T18:38:10.128630Repositórios Científicos de Acesso Aberto de Portugal (RCAAP) - FCCN, serviços digitais da FCT – Fundação para a Ciência e a Tecnologiafalse
dc.title.none.fl_str_mv EOLinPLACE
an international research project to reform the way dying places are classified and understood
title EOLinPLACE
spellingShingle EOLinPLACE
Namukwaya, Elizabeth
classification
death
death certificates
mortality
palliative care
patient preference
terminal care
Advanced and Specialised Nursing
title_short EOLinPLACE
title_full EOLinPLACE
title_fullStr EOLinPLACE
title_full_unstemmed EOLinPLACE
title_sort EOLinPLACE
author Namukwaya, Elizabeth
author_facet Namukwaya, Elizabeth
de Sousa, Andrea Bruno
Lopes, Sílvia
Touwen, Dorothea Petra
van der Steen, Jenny Theodora
Bélanger, Emmanuelle
Brooks, Joanna
Yghemonos, Stecy
Sehmi, Kawaldip
Gomes, Barbara
author_role author
author2 de Sousa, Andrea Bruno
Lopes, Sílvia
Touwen, Dorothea Petra
van der Steen, Jenny Theodora
Bélanger, Emmanuelle
Brooks, Joanna
Yghemonos, Stecy
Sehmi, Kawaldip
Gomes, Barbara
author2_role author
author
author
author
author
author
author
author
author
dc.contributor.none.fl_str_mv Comprehensive Health Research Centre (CHRC) - Pólo ENSP
Centro de Investigação em Saúde Pública (CISP/PHRC)
Escola Nacional de Saúde Pública (ENSP)
RUN
dc.contributor.author.fl_str_mv Namukwaya, Elizabeth
de Sousa, Andrea Bruno
Lopes, Sílvia
Touwen, Dorothea Petra
van der Steen, Jenny Theodora
Bélanger, Emmanuelle
Brooks, Joanna
Yghemonos, Stecy
Sehmi, Kawaldip
Gomes, Barbara
dc.subject.por.fl_str_mv classification
death
death certificates
mortality
palliative care
patient preference
terminal care
Advanced and Specialised Nursing
topic classification
death
death certificates
mortality
palliative care
patient preference
terminal care
Advanced and Specialised Nursing
description Funding 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.
publishDate 2024
dc.date.none.fl_str_mv 2024-07-17T22:20:34Z
2024-01-01
2024-01-01T00:00:00Z
dc.type.status.fl_str_mv info:eu-repo/semantics/publishedVersion
dc.type.driver.fl_str_mv info:eu-repo/semantics/article
format article
status_str publishedVersion
dc.identifier.uri.fl_str_mv http://hdl.handle.net/10362/169745
url http://hdl.handle.net/10362/169745
dc.language.iso.fl_str_mv eng
language eng
dc.relation.none.fl_str_mv 2632-3524
PURE: 95438874
https://doi.org/10.1177/26323524231222498
dc.rights.driver.fl_str_mv info:eu-repo/semantics/openAccess
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
dc.source.none.fl_str_mv reponame:Repositórios Científicos de Acesso Aberto de Portugal (RCAAP)
instname:FCCN, serviços digitais da FCT – Fundação para a Ciência e a Tecnologia
instacron:RCAAP
instname_str FCCN, serviços digitais da FCT – Fundação para a Ciência e a Tecnologia
instacron_str RCAAP
institution RCAAP
reponame_str Repositórios Científicos de Acesso Aberto de Portugal (RCAAP)
collection Repositórios Científicos de Acesso Aberto de Portugal (RCAAP)
repository.name.fl_str_mv Repositórios Científicos de Acesso Aberto de Portugal (RCAAP) - FCCN, serviços digitais da FCT – Fundação para a Ciência e a Tecnologia
repository.mail.fl_str_mv info@rcaap.pt
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