Translation and cross-cultural adaptation of a family booklet on comfort care in dementia: sensitive topics revised before implementation
- Jenny T van der Steen1,
- Cees M P M Hertogh1,
- Tjomme de Graas1,
- Miharu Nakanishi2,
- Franco Toscani3,
- Marcel Arcand4
- 1 Department of general practice & elderly care medicine, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands
- 2 Institute for Health Economics and Policy, Minato-ku, Tokyo, Japan
- 3 Lino Maestroni Foundation-Palliative Medicine Research Institute, Cremona, Italy
- 4 Department of Family Medicine, University of Sherbrooke, Sherbrooke, QC, Canada
- Correspondence to Dr Jenny T van der Steen, Department of general practice & elderly care medicine, VU University Medical Center, EMGO Institute for Health and Care Research, Van der Boechorststraat 7, Amsterdam 1081 BT, The Netherlands;
- Received 27 June 2012
- Revised 26 September 2012
- Accepted 16 October 2012
- Published Online First 10 November 2012
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.