Translation and cultural adaptation of the Chinese version of the International 'Care Of the Dying Evaluation' (CODE™) tool for assessing the quality of care for dying patients from the perspective of bereaved family members

BackgroundCulturally appropriate assessments are needed to improve care during the last days of life. One way of assessment is to use a tool with bereaved family members after death. The aim of this study was to translate and cross-culturally adapt the International 'Care Of the Dying Evaluation' questionnaire (i-CODE) into Mandarin Chinese.MethodsTranslation and cultural adaptation process was performed according to the Brislin Classical Backtranslation Model and the principles of the European Organization for Research and Treatment of Cancer (EORTC) quality-of-life group translation procedure. Fifteen bereaved family members, 5 palliative care experts and 4 translators were involved in the process, which followed 10 steps: a) Preparation; b) Forward translation; c) Reconciliation; d) Backward translation; e) Reconciliation; f) Backward translation review; g) Expert consultation; h) Cognitive interview; i) Cognitive interview review; h) Final proofreading.ResultsThe translation and cultural adaptation followed established guidelines. items 1 ("washing"), 2 ("giving medicines"), 14 ("noisy rattle"), 18 ("giving fluids through a 'drip'") emerged divergence and reached a consensus among the research team, translators, and original author. In the cultural adaptation, demographic items were restructured to align with Chinese context. Gender-neutral terminology was employed by using "they/them". Inconsistent subject, terminology "healthcare team" and Items 4 ("had adequate privacy"), 14 ("noisy rattle"), 27 ("in the right place"), and 28 ("at the actual time of his/her death") was modified based on experts' assessments and bereaved families' comments. Linguistic, cultural, and conceptual equivalence was achieved in the process of translation and cultural adaptation.ConclusionA questionnaire allowing for international comparisons related to quality of care for dying individuals has been developed in Mandarin Chinese. Key cultural adaptations were required to ensure that the Chinese version of the i-CODE was suitable for use. It has proved content and face validity. Future work will focus on psychometric testing assessing the validity and reliability of questionnaire and its use in assessing and improving care.