Translation and cultural adaptation of research instruments - guidelines and challenges: an example in FAMCARE-2 for use in Sweden

Background: Assessing and evaluating health care is important, and an abundance of instruments are developed in different languages. Translating existing, validated instruments is demanding and calls for adherence to protocol. Purpose: The purpose of this study was to translate and culturally adapt the FAMCARE-2 scale for use in Sweden. Methods: Traditional back-translation and the decentering stance were utilized and assessed. Experts in palliative care clinic and research were involved; the FAMCARE-2 instrument was discussed with family caregivers and content validity was assessed by experienced health professionals. Results: Significant discrepancies were not revealed by back-translation. Using the decentering stance gave reliable structure and opportunities for reflection throughout the translation process. Discussion: Translating an existing instrument into a second language requires interpretation and adaptation more than a naive translation. The back-translation process may be enhanced if the decentering stance is adopted