{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,21]],"date-time":"2026-03-21T02:51:40Z","timestamp":1774061500526,"version":"3.50.1"},"reference-count":47,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2024,1,1]],"date-time":"2024-01-01T00:00:00Z","timestamp":1704067200000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Palliat\ufffdCare"],"published-print":{"date-parts":[[2024,1]]},"abstract":"<jats:sec><jats:title>Background:<\/jats:title><jats:p> 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. <\/jats:p><\/jats:sec><jats:sec><jats:title>Objectives:<\/jats:title><jats:p> 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. <\/jats:p><\/jats:sec><jats:sec><jats:title>Design:<\/jats:title><jats:p> Mixed-methods observational research. <\/jats:p><\/jats:sec><jats:sec><jats:title>Methods and analysis:<\/jats:title><jats:p> 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\u2019 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. <\/jats:p><\/jats:sec><jats:sec><jats:title>Ethics:<\/jats:title><jats:p> Approved by the ethics committee of the University of Coimbra, Faculty of Medicine (CE-068-2022) and committees in each of the participating countries. <\/jats:p><\/jats:sec><jats:sec><jats:title>Discussion:<\/jats:title><jats:p> 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. <\/jats:p><\/jats:sec><jats:sec><jats:title>Trial registration:<\/jats:title><jats:p> Research Registry UIN 9213. <\/jats:p><\/jats:sec>","DOI":"10.1177\/26323524231222498","type":"journal-article","created":{"date-parts":[[2024,2,13]],"date-time":"2024-02-13T03:53:06Z","timestamp":1707796386000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":3,"title":["EOLinPLACE: an international research project to reform the way dying places are classified and understood"],"prefix":"10.1177","volume":"18","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-5241-2742","authenticated-orcid":false,"given":"Elizabeth","family":"Namukwaya","sequence":"first","affiliation":[{"name":"Faculty of Medicine, University of Coimbra, Coimbra, Portugal Department of Medicine, College of Health Sciences, Makerere University, Kampala, Uganda"}]},{"given":"Andrea Bruno","family":"de Sousa","sequence":"additional","affiliation":[{"name":"Faculty of Medicine, University of Coimbra, Coimbra, Portugal"}]},{"given":"S\u00edlvia","family":"Lopes","sequence":"additional","affiliation":[{"name":"NOVA National School of Public Health, Public Health Research Centre, Comprehensive Health Research Center, CHRC, NOVA University Lisbon, Lisbon, Portugal"}]},{"given":"Dorothea Petra","family":"Touwen","sequence":"additional","affiliation":[{"name":"Department of Medical Ethics and Health Law, Leiden University Medical Center, Leiden, the Netherlands"}]},{"given":"Jenny Theodora","family":"van der Steen","sequence":"additional","affiliation":[{"name":"Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, the Netherlands"},{"name":"Department of Primary and Community Care and Radboudumc Alzheimer Center, Radboud University Medical Center, Nijmegen, the Netherlands"}]},{"given":"Emmanuelle","family":"B\u00e9langer","sequence":"additional","affiliation":[{"name":"Center for Gerontology and Healthcare Research, Brown University School of Public Health, Providence, RI, USA"}]},{"given":"Joanna","family":"Brooks","sequence":"additional","affiliation":[{"name":"Population Health and Palliative Medicine, Master of Health Services Administration, University of Kansas School of Medicine, Kansas City, KS, USA"}]},{"given":"Stecy","family":"Yghemonos","sequence":"additional","affiliation":[{"name":"Eurocarers, Brussels, Belgium"}]},{"given":"Kawaldip","family":"Sehmi","sequence":"additional","affiliation":[{"name":"International Alliance of Patients\u2019 Organizations, London, UK"}]},{"given":"Barbara","family":"Gomes","sequence":"additional","affiliation":[{"name":"Faculty of Medicine, University of Coimbra, P\u00f3lo III, Sub-Unidade 3, Azinhaga de Santa Comba, Coimbra 3000-548, Portugal Cicely Saunders Institute of Palliative Care, Policy 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