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dc.contributor.authorNishimura, Mayumi
dc.contributor.authorDening, Karen Harrison
dc.contributor.authorSampson, Elizabeth L.
dc.contributor.authorVidal, Edison Iglesias de Oliveira
dc.contributor.authorde Abreu, Wilson Correia
dc.contributor.authorKaasalainen, Sharon
dc.contributor.authorEisenmann, Yvonne
dc.contributor.authorDempsey, Laura
dc.contributor.authorMoore, Kirsten J.
dc.contributor.authorDavies, Nathan
dc.contributor.authorBolt, Sascha R.
dc.contributor.authorMeijers, Judith M.
dc.contributor.authorDekker, Natashe Lemos
dc.contributor.authorMiyashitas, Mitsunori
dc.contributor.authorNakanishi, Miharu
dc.contributor.authorNakayama, Takeo
dc.contributor.authorvan der Steen, Jenny T.
dc.identifier.citationNishimura, M., Dening, K.H., Sampson, E.L. et al. (2022). Cross-cultural conceptualization of a good end of life with dementia: a qualitative study. BMC Palliative Care. 21(106).
dc.description.abstractBackground: 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 com mon 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, fve 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 person hood 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.en_US
dc.relation.ispartofBMC Palliative Careen_US
dc.rightsAttribution-NonCommercial-NoDerivatives 4.0 International*
dc.subjectPalliative careen_US
dc.titleCross-cultural conceptualization of a good end of life with dementia: a qualitative studyen_US
dc.contributor.affiliationTechnological University of the Shannon Midlands Midwesten_US
dc.contributor.sponsorThe Graduate School of Kyoto University, Japan, the University Network for the Care sector Zuid-Holland (UNC-ZH), Leiden, the Netherlands, and Alzheimer’s Society, UK (grant number: AS-JF-16b-012) funded this study. The co-authors’ original studies are supported by European Union’s Seventh Framework Programme (FP7/2007–2013) (grant agreement number 258883), Sao Paulo Research Foundation [FAPESP] grant 2019/18129–6, ZonMw, the Netherlands Organization for Health Research and Development (grant num ber 844001405), the Ministerie van Volksgezondheid, Welzijn en Sport (VWS), Cordaan, Ben Sajet Centrum, and the Research Priority Area Global Health of the University of Amsterdam, and the 2018 Kyoto University School of Public Health - Super Global Course’s travel scholarship, through the Top Global University Project “Japan Gateway: Kyoto University Top Global Program,” sponsored by the Ministry of Education, Culture, Sports, Science and Technology (MEXT), Japan.en_US
dc.identifier.orcid 0000-0003-2541-8318en_US
dc.subject.departmentFaculty of Science & Health TUS:MMen_US

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