EOLinPLACE: an international research project to reform the way dying places are classified and understood

Simple item page
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.date.accessioned2024-02-26T11:29:46Z
dc.date.available2024-02-26T11:29:46Z
dc.date.issued2024-02
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_US
dc.identifier.citationNamukwaya, Elizabeth, Andrea Bruno de Sousa, Sílvia Lopes, et al. 'EOLinPLACE: An International Research Project to Reform the Way Dying Places are Classified and Understood', Palliative Care and Social Practice, vol. 18/(2024), pp. 26323524231222498.en_US
dc.identifier.issnEISSN 2632-3524
dc.identifier.urihttps://nru.uncst.go.ug/handle/123456789/9414
dc.language.isoenen_US
dc.publisherSAGE Publicationsen_US
dc.subjectclassification, death, death certificates, mortality, palliative care, patient preference, terminal careen_US
dc.titleEOLinPLACE: an international research project to reform the way dying places are classified and understooden_US
dc.typeArticleen_US
Files
Original bundle
Now showing 1 - 1 of 1
Thumbnail Image
Name:
namukwaya-et-al-2024-eolinplace-an-international-research-project-to-reform-the-way-dying-places-are-classified-and.pdf
Size:
398.6 KB
Format:
Adobe Portable Document Format
Description:
Journal Article
Download
License bundle
Now showing 1 - 1 of 1
No Thumbnail Available
Name:
license.txt
Size:
1.71 KB
Format:
Item-specific license agreed upon to submission
Description:
Download
Collections
Medical and Health Sciences