Translation and cross-cultural adaptation of a family booklet on comfort care in dementia: Sensitive topics revised before implementation

Jenny T. van der Steen, Cees M.P.M. Hertogh, Tjomme de Graas, Miharu Nakanishi, Franco Toscani, Marcel Arcand

研究成果: Article査読

21 被引用数 (Scopus)


Introduction: Families of patients with dementia may need support in difficult end-of-life decision making. Such guidance may be culturally sensitive. Methods: To support families in Canada, a booklet was developed to aid decision making on palliative care issues. For reasons of cost effectiveness and promising effects, we prepared for its implementation in Italy, the Netherlands and Japan. Local teams translated and adapted the booklet to local ethical, legal and medical standards where needed, retaining guidance on palliative care. Using qualitative content analyses, we grouped and compared adaptations to understand culturally sensitive aspects. Results: Three themes emerged: (1) relationships among patient, physician and other professionals-the authority of the physician was more explicit in adapted versions; (2) patient rights and family position-adding detail about local regulations; and (3) typology of treatments and decisions. Considerations underlying palliative care decisions were detailed (Dutch and Italian versions), and the Japanese version frequently referred to professional and legal standards, and life-prolongation was a competing goal. Text on artificial feeding or fluids and euthanasia was revised extensively. Conclusions: Providing artificial feeding and fluids and discussing euthanasia may be particularly sensitive topics, and guidance on these subjects needs careful consideration of ethical aspects and possible adaptations to local standards and practice. The findings may promote cross-national debate on sensitive, core issues regarding end-of-life care in dementia.

ジャーナルJournal of Medical Ethics
出版ステータスPublished - 2013 2

ASJC Scopus subject areas

  • 健康(社会科学)
  • 諸問題の倫理的、法的側面
  • 人文科学(その他)
  • 健康政策


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