Cross-cultural conceptualization of a good end of life with dementia: a qualitative study

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Autor(es): dc.contributorKyoto University-
Autor(es): dc.contributorDementia UK-
Autor(es): dc.contributorUniversity College London-
Autor(es): dc.contributorUniversidade Estadual Paulista (UNESP)-
Autor(es): dc.contributorUniversity of Porto (ESEP/CINTESIS)-
Autor(es): dc.contributorMcMaster University-
Autor(es): dc.contributorUniversity Hospital of Cologne-
Autor(es): dc.contributorTechnological University of the Shannon: Midlands Midwest-
Autor(es): dc.contributorRoyal Park Campus-
Autor(es): dc.contributorMaastricht University-
Autor(es): dc.contributorZuyderland Medical Center-
Autor(es): dc.contributorLeiden University-
Autor(es): dc.contributorTohoku University Graduate School of Medicine-
Autor(es): dc.contributorLeiden University Medical Center-
Autor(es): dc.contributorRadboud University Medical Center-
Autor(es): dc.creatorNishimura, Mayumi-
Autor(es): dc.creatorDening, Karen Harrison-
Autor(es): dc.creatorSampson, Elizabeth L.-
Autor(es): dc.creatorOliveira Vidal, Edison Iglesias de-
Autor(es): dc.creatorAbreu, Wilson Correia de-
Autor(es): dc.creatorKaasalainen, Sharon-
Autor(es): dc.creatorEisenmann, Yvonne-
Autor(es): dc.creatorDempsey, Laura-
Autor(es): dc.creatorMoore, Kirsten J.-
Autor(es): dc.creatorDavies, Nathan-
Autor(es): dc.creatorBolt, Sascha R.-
Autor(es): dc.creatorMeijers, Judith M. M.-
Autor(es): dc.creatorDekker, Natashe Lemos-
Autor(es): dc.creatorMiyashita, Mitsunori-
Autor(es): dc.creatorNakanishi, Miharu-
Autor(es): dc.creatorNakayama, Takeo-
Autor(es): dc.creatorvan der Steen, Jenny T.-
Data de aceite: dc.date.accessioned2025-08-21T22:00:07Z-
Data de disponibilização: dc.date.available2025-08-21T22:00:07Z-
Data de envio: dc.date.issued2023-03-01-
Data de envio: dc.date.issued2023-03-01-
Data de envio: dc.date.issued2022-11-30-
Fonte completa do material: dc.identifierhttp://dx.doi.org/10.1186/s12904-022-00982-9-
Fonte completa do material: dc.identifierhttp://hdl.handle.net/11449/240217-
Fonte: dc.identifier.urihttp://educapes.capes.gov.br/handle/11449/240217-
Descrição: dc.descriptionBackground: Research on the nature of a “good death” has mostly focused on dying with cancer and other life-limiting diseases, but less so on dementia. Conceptualizing common cross-cultural themes regarding a good end of life in dementia will enable developing international care models. Methods: We combined published qualitative studies about end of life with dementia, focus group and individual interviews with the researchers, and video-conferencing and continuous email discussions. The interviews were audio-recorded and transcribed verbatim. The data were analyzed thematically, and the researchers developed common themes referring to their original studies. Results: Fourteen qualitative researchers representing 14 cross-cultural studies covering qualitative data of 121 people with dementia and 292 family caregivers. The researchers and data were from eight countries UK, The Netherlands, Japan, Portugal, Germany, Canada, Brazil, and Ireland. Three focus groups, five individual interviews, and video-conferencing were conducted and feedback on multiple iterations was gained by 190 emails between May 2019 and April 2020 until consensus was achieved. Nine cross-culturally common themes emerged from the discussions and shared interpretation of the data of persons with dementia and family caregivers. Three represent basic needs: “Pain and Symptoms Controlled,” “Being Provided Basic Care,” and “A Place like Home.” Other themes were “Having Preferences Met,” “Receiving Respect as a Person,” “Care for Caregivers,” “Identity Being Preserved,” “Being Connected,” and “Satisfaction with Life and Spiritual Well-being.” “Care for Caregivers” showed the greatest difference in emphasis across cultures. Good relationships were essential in all themes. Conclusions: The common cross-cultural themes comprise a framework underpinned by value placed on personhood and dignity, emphasizing that interdependency through relationships is essential to promote a good end of life with dementia. These themes and valuing the importance of relationships as central to connecting the themes could support care planning and further development of a dementia palliative care model. Trial registration: The Graduate School and Faculty of Medicine Kyoto University (R1924–1).-
Descrição: dc.descriptionAlzheimer's Society-
Descrição: dc.descriptionDepartment of Health Informatics School of Public Health Graduate School of Medicine Kyoto University, Sakyo-ku, Yoshida Konoe-cho-
Descrição: dc.descriptionDementia UK, 7th Floor, One Aldgate-
Descrição: dc.descriptionMarie Curie Palliative Care Research Department University College London, Gower Street-
Descrição: dc.descriptionBotucatu Medical School Sao Paulo State University (UNESP), Av. Prof. Mario Rubens Guimaraes Montenegro, SP-
Descrição: dc.descriptionCenter for Health Technology and Services Research University of Porto (ESEP/CINTESIS), R. Dr. Plácido da Costa-
Descrição: dc.descriptionSchool of Nursing McMaster University, 1280 Main Street West-
Descrição: dc.descriptionDepartment of Palliative Medicine University Hospital of Cologne, Kerpener Str. 62-
Descrição: dc.descriptionDepartment of Nursing and Healthcare Technological University of the Shannon: Midlands Midwest, Dublin Road, Co Westmeath-
Descrição: dc.descriptionNational Ageing Research Institute Inc. Royal Melbourne Hospital Royal Park Campus, Gate 4, Building 8, 34-54 Poplar Rd-
Descrição: dc.descriptionResearch Department of Primary Care and Population Health University College London, Gower Street-
Descrição: dc.descriptionDepartment of Health Services Research Care and Public Health Research Institute Living Lab in Ageing and Long-Term Care Faculty of Health Medicine and Life Sciences Maastricht University, P.O. Box 616, MD-
Descrição: dc.descriptionZuyderland Care Zuyderland Medical Center, Dr. H. van der Hoffplein 1, BG-
Descrição: dc.descriptionInstitute of Cultural Anthropology and Development Sociology Leiden University, Pieter de la Court Wassenaarseweg 52, AK-
Descrição: dc.descriptionDepartment of Palliative Nursing Health Sciences Tohoku University Graduate School of Medicine-
Descrição: dc.descriptionDepartment of Psychiatric Nursing Tohoku University Graduate School of Medicine, 2-1 Seiryo-machi, Aoba-ku, Miyagi-
Descrição: dc.descriptionDepartment of Public Health and Primary Care Leiden University Medical Center, Hippocratespad 21, ZD-
Descrição: dc.descriptionDepartment of Primary and Community Care Radboud University Medical Center-
Descrição: dc.descriptionBotucatu Medical School Sao Paulo State University (UNESP), Av. Prof. Mario Rubens Guimaraes Montenegro, SP-
Descrição: dc.descriptionAlzheimer's Society: AS-JF-16b-012-
Idioma: dc.languageen-
Relação: dc.relationBMC Palliative Care-
???dc.source???: dc.sourceScopus-
Palavras-chave: dc.subjectCulture-
Palavras-chave: dc.subjectDementia-
Palavras-chave: dc.subjectPalliative care-
Título: dc.titleCross-cultural conceptualization of a good end of life with dementia: a qualitative study-
Tipo de arquivo: dc.typelivro digital-
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