Examining Barriers and Motivators for Research Participation Among Chinese American Populations in NYC and NJ

Background and Purpose: Inadequate representation of diverse populations in clinical research is widely acknowledged as a major factor contributing to health disparities affecting underserved populations. Over 5.5 million Chinese Americans reside in the US, and they represent the largest ethnic group of Asian Americans who have distinct health disparities. However, language and cultural barriers significantly hinder research recruitment efforts for this population.

Methods: This study examined the barriers and facilitators to research participation for Chinese Americans, with focus on those living in NYC and NJ through the use of key informant interviews (n = 11). Key informant interviews were approximately 60 minutes long and conducted through video-conferencing through a secure Zoom session by one of the researchers and a project staff who were fluent in English, Cantonese-Chinese and Mandarin-Chinese. Participants were primarily English-speaking, but also spoke Cantonese-Chinese and/or Mandarin-Chinese, and had deep ties to the Chinese community. They were recruited through professional and community-based networks via a Community Advisory Board from an NIH-funded Asian-focused research center as well as social media channels. Interviews focused on identifying barriers and facilitators regarding participation in research studies among Chinese Americans. IRB was approved and consent was obtained from participants. Thematic analyses were conducted to identify the most salient themes from participant interviews by a three-member research team, and themes were reviewed for consistency to reach consensus with each member.

Results: Findings indicated participants highlighted themes related to: 1) General understanding and perception of research, 2) Barriers to participation, and 3) Motivators for participation. These can include limited understanding and exposure to research processes, language barriers in particular with older adults, concerns with sharing personal information and fear of judgment from others in their community, and risks from side effects or other consequences. Motivators for participation can include trusted sources and networks which can be crucial to outreach and recruitment, as well as efforts from researchers to build meaningful, reciprocal connections with community partners.

Conclusions and Implications: Findings from this study suggest that the Chinese American community have salient and practical concerns regarding how they engage in research and choose to participate in research studies. Addressing these concerns and building trust are important steps to the advancement of knowledge in research for this community. Results from this study will inform the cultural adaptation of a research literacy tool for Chinese Americans, and lend insights into how to increase participation with this underserved population.