Using a multi‐staged translation method to develop socio‐culturally and language‐sensitive study materials: Lessons learned from an Asian cohort for Alzheimer’s disease

Abstract

AbstractBackgroundAlzheimer’s disease (AD) is a global health crisis on multiple levels. A major impediment to AD research is the availability of socio‐culturally and language appropriate study materials and instruments and inclusion of under‐represented minorities. To fulfill this need, we apply best practices and lessons learned to translate study materials for use in the Asian Cohort for Alzheimer’s Disease’s (ACAD) study of AD in Asian Americans and Asian Canadians (ASAC) with the overarching goal in inclusivity of these populations to better understand the etiology of AD.MethodOur multi‐stag translation process is guided by the World Health Organization’s (WHO) process of translation (forward and reverse translation, consensus verification and reconciliation) to achieve parity with the English materials for our target groups (Chinese (simplified and traditional; Mandarin and Cantonese), Korean and Vietnamese). ACAD’s collective experience partnering with aging Asian adults has revealed not only a language barrier, but also issues with socio‐cultural communication traits, and literal translations that stigmatize AD and dementia. Consequently, we have taken into account the varying perceptions and expressions of words in a social context. The translation process was implemented by a team of multi‐lingual researchers/clinicians/community leaders with extensive practical translation experience. Since language influences how a speaker views the world, we employed a cross‐section of translators and emphasized conceptual (vs. literal) culturally appropriate translations for the community.ResultsTo date, we have developed Asian language versions of ACAD documents (informed consent, data collection, community and social media outreach materials, website) for all our target groups and continue the process of beta‐testing our study materials (including the cognitive assessment instruments).ConclusionThe multi‐stage translation process accounts for distinctive Asian socio‐cultural‐language backgrounds, providing an important guideline for AD researchers to promote health literacy in the health and general community in an effort to reduce health disparities in underrepresented groups, like Asians. In order to ensure fidelity across languages, we will continue validating the original English version in Chinese, Korean, and Vietnamese versions in the ACAD study.