title: Translation and cross-cultural adaptation of a family booklet on comfort care in dementia: sensitive topics revised before implementation.
abstract: BACKGROUND
  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.
authors.affiliation: Department of general practice & elderly care medicine, VU University Medical Center, EMGO Institute for Health and Care Research, Amsterdam, The Netherlands. j.vandersteen@vumc.nl
authors.forename: Jenny T
authors.initials: JT
authors.lastname: van der Steen
authors.forename: Cees M P M
authors.initials: CM
authors.lastname: Hertogh
authors.forename: Tjomme
authors.initials: T
authors.lastname: de Graas
authors.forename: Miharu
authors.initials: M
authors.lastname: Nakanishi
authors.forename: Franco
authors.initials: F
authors.lastname: Toscani
authors.forename: Marcel
authors.initials: M
authors.lastname: Arcand
mesh_terms: D002170:Canada; D003466:Cultural Characteristics; D003657:Decision Making; D003704:Dementia; D005190:Family; D005440:Fluid Therapy / Q000941:ethics; D006801:Humans; D007391:International Cooperation; D007398:Interpersonal Relations; D007558:Italy; D007564:Japan; D009426:Netherlands; D018529:Nutritional Support / Q000941:ethics; D010166:Palliative Care / Q000941:ethics; D010174:Pamphlets; D028701:Patient Rights / Q000941:ethics; D010819:Physician's Role; D036301:Qualitative Research; D013727:Terminal Care / Q000941:ethics; D014177:Translations