Cross-cultural Adaptation of the Document of Advance Care Planning for Chinese Adolescents and Young Adults: Voicing My CHOiCES

Abstract

Objective To describe the cross-cultural adaptation of the document of advance care planning (ACP) Voicing My CHOiCESTM in Chinese, and provide the basis for the practice of ACP in China. Methods The process of cross-cultural adaptation involved document translation and synthesis, evaluation of healthcare providers, evaluation of patients, back translation, author revision of the original document, and finalization. The participants were all kinds of healthcare providers involved in ACP practice, including doctors, nurses, social workers, psychologists, hospice volunteers, anesthesiologists, nutritionists, and pharmacists. The heathcare providers were invited to answer a questionnaire about the document's structure, importance, appropriateness, and level of language localization. The evaluation of healthcare providers included three rounds of the process. We revised the document based on the feedback and developed the first draft. The first draft of the document was reviewed by young patients with fatal diseases and their families. They read each page of the document and rated the perceived appropriateness, helpfulness, and stressfulness of each item. After further revision, the final document was formed. Results Due to the differences in language, culture, health, and legal system between China and the United States, the cross-cultural adaptations were made in some topics of the document. The Chinese version of the document included 13 topics, involving medical and nursing decision-making, daily life planning, funeral planning, and spiritual support, etc. In total, 91.67% of the patients and 80% of their parents considered all topics covered to be appropriate for age and culture. In total, 75% of patients and 70% of their parents found all the topics to be helpful. In the evaluation of stress, death-related topics brought pressure on patients. Conclusions The Chinese version of Voicing My CHOiCESTM is the first ACP document applicable to adolescents and young adults in China. This document can help young Chinese patients to think and express their wishes and preferences, and guide patients, family members, and healthcare providers to fully and deeply communicate with each other about future planning.

Keywords

• advance care planning
• cross-cultural adaptation
• voicing my choices
• adolescent
• young adult