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

Research output: Contribution to journalArticlepeer-review

21 Citations (Scopus)

Abstract

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.

Original languageEnglish
Pages (from-to)104-109
Number of pages6
JournalJournal of Medical Ethics
Volume39
Issue number2
DOIs
Publication statusPublished - 2013 Feb
Externally publishedYes

ASJC Scopus subject areas

  • Health(social science)
  • Issues, ethics and legal aspects
  • Arts and Humanities (miscellaneous)
  • Health Policy

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