Improving Asian Americans’ awareness and interest in clinical research: Examining the role of culturally tailored messaging

Abstract

AbstractBackgroundAsian Americans and Pacific Islanders (AAPI) are one of the fastest‐growing populations in the United States, yet these communities comprise less than one percent of participants in NIH’s Alzheimer’s disease and Alzheimer’s disease related dementias (AD/ADRD) clinical research. This underrepresentation is due to numerous barriers well‐documented in the literature, with a key deterrent being a lack of culturally and linguistically appropriate outreach materials. This abstract presents findings from focus groups conducted by the National Institute on Aging (NIA) to identify culturally and linguistically appropriate message concepts that raise awareness, address barriers and motivate Asian American and Pacific Islanders to consider participation in AD/ADRD research studies.MethodEighteen virtual focus groups (N = 103 individuals) were conducted with Chinese Americans, Filipino Americans, and Indian Americans who are at‐risk for AD/ADRD or are caregivers to people living with dementia. Focus groups were conducted in Chinese, Hindi, Tagalog and English. The sessions tested multiple audience‐tailored message concepts designed to increase interest and encourage participation in AD/ADRD clinical research. These discussions also examined participants’ preferred language, terminology and communication approaches.ResultOverall, message concepts that 1) emphasized the value of caring for family members; 2) offered a sense of hope; 3) communicated a clear call to action; and 4) provided opportunities to learn more information about clinical research resonated across all groups. Between participant audiences, there were some important differences, including around terminology preferences. For example, Chinese‐American participants expressed concern about the term “caregiver” as it implied that taking care of a loved one was a burden or a professional job, rather than a familial responsibility. Concept visuals will be presented.ConclusionThis research conducted by NIA improves our understanding of messaging concepts that do and do not resonate with AAPI, providing valuable insight into themes that should be leveraged to effectively promote awareness about AD/ADRD clinical research with these communities. The finding from this study were used to develop, finalize and make available to the research community a suite of culturally and linguistically appropriate materials to increase awareness and interest in AD/ADRD clinical research among AAPI communities.