The importance of community and culture for the recruitment, engagement, and retention of Chinese American immigrants in health interventions

Abstract

Chinese Americans experience cancer health disparities throughout the entire cancer continuum. Yet, they remain underrepresented in health research in part due to barriers in recruitment, engagement, and retention. This paper describes the strategies that we devised, by drawing upon our experiences with conducting two culturally sensitive cancer intervention studies, to help researchers improve their recruitment and retention rates of Chinese Americans in health research and address the gap in knowledge on intervention research with this population. The first study assessed the efficacy, adoption, and impact of an intervention, delivered by community health workers, to improve adherence to recommended stomach cancer prevention guidelines for at-risk Chinese Americans. The second study evaluated the feasibility and preliminary efficacy of a culturally adapted version of the Expressive Helping intervention for Chinese American cancer patients and survivors. Our main recruitment strategies revolved around building community relationships, developing culturally sensitive materials, and establishing good first impressions with participants. Our main engagement and retention strategies focused on attending to cultural sensitivity, fostering relationships, and using technology. Harnessing the community’s inherent strengths and prioritizing cultural understanding is crucial for culturally sensitive health research with Chinese Americans.

Implications.

Practice: Building community relationships and establishing good first impressions are important for the recruitment, engagement, and retention of Chinese immigrants in cancer health interventions.

Policy: The development of culturally sensitive interventions must consider the cultural context, researcher–participant relationship, and cultural values of the group they are intending to reach.

Research: Future research should aim to incorporate these strategies to maximize their recruitment and retention of Chinese Americans and other difficult-to-reach populations.

INTRODUCTION

Asian Americans are the fastest-growing immigrant group in the USA, projected to double in size by 2050 [1]. They represent a pan-ethnic group with individuals spanning across East Asia, Southeast Asia, and the Indian subcontinent. Although Asian American subgroups (e.g., Chinese, Filipino) share cultural values rooted in collectivism [2], they have distinct languages, immigration histories, and exposure to risk and protective factors that differentially affect their health [3]. The “model minority” myth and stereotype have contributed to the pervasive notion that all Asian Americans are successful and well-adjusted, causing health care professionals, policymakers, and the general public to develop the misconception that Asian Americans do not experience health disparities [4, 5]. Consequently, researchers have called for the disaggregation of research on “Asian Americans” by focusing on specific Asian subgroups [6–8]. The present study focuses on Chinese Americans, a group that experiences cancer health disparities throughout the entire cancer continuum, ranging from prevention, detection, diagnosis, treatment, to survivorship. Chinese Americans represent the largest subgroup of Asian Americans, the largest concentration of which (nearly 600,000 individuals) resides in New York City [1].

Cancer is the leading cause of death among Chinese Americans [9], with higher rates of stomach, lung, and liver cancer than non-Hispanic Whites and other Asian subgroups. Despite the success of public health messaging and screening programs in improving the detection and treatment of cervical and liver cancer among the general population [10, 11], Chinese Americans continue to endorse low cancer prevention and screening behaviors [3, 12]. Once diagnosed with cancer, research indicates that Chinese Americans experience lower satisfaction with treatment decision-making and ineffective communication with their medical providers [13]. Even after treatment has been completed, Chinese Americans who survive cancer have poorer mental health and quality of life compared to their non-Hispanic White counterparts [14, 15].

These cancer health disparities experienced by Chinese Americans are overshadowed by the lack of inclusion of Chinese Americans in cancer research [16–18]. Despite congressional acts (e.g., National Institute of Health Revitalization Act of 1993) and initiatives (e.g., Healthy People 2020) to promote the inclusion of racial and ethnic minorities in federally funded clinical research, less than 2% of published research has responded to this charge to recruit diverse participants of color in cancer research [19]. Moreover, a recent publication revealed that a mere 0.17% of the National Institutes of Health research has focused on Asian American populations [20]. However, these system-level barriers only partly account for the low participation rates in cancer research among Chinese Americans. In addition to system-level challenges related to funding are challenges related to language access [21]. To sufficiently reach systemically underserved, underreached populations, including Chinese Americans, community- and individual-level cultural values and norms must be addressed. Individual-level norms and cultural values also contribute significantly to this disparity in research representation. Resolving the issue of low Chinese American participation in cancer research will not only require changes at the systemic level but also necessitates attention on the individual level.

Chinese Americans experience many individual-level barriers to research participation. First, limited English proficiency represents a major barrier for first-generation Chinese immigrants, who constitute a large portion of Chinese Americans in the USA [22]. Language barriers are associated with lower health literacy and can lead to ineffective communication with health care providers [23, 24]. First-generation Chinese immigrants face significant challenges in accessing language-appropriate cancer care, as well as discrimination in health care [25]. Second, Chinese Americans tend to report a general lack of knowledge and negative beliefs about cancer, such as the notion that cancer is contagious or punishment for immoral behavior [26]. Moreover, Chinese American women in one study rated routine cervical and breast cancer screenings as unimportant because they believe that female organs cease to function when they are no longer at child-bearing age [27]. Some research indicates that some Chinese Americans endorse fatalistic beliefs about cancer – thinking that cancer is decided by fate and therefore cannot be changed by prevention or screening practices [28]. Finally, logistical barriers to research participation, including long and inflexible work hours, schedule conflicts, and lack of transportation, also contribute to low recruitment and retention rates in cancer research.

Various strategies to improve recruitment, engagement, and retention of Chinese American participants in cancer research have been implemented and tested. For example, researchers have trained community health workers, who are indigenous to the community in which they work, to deliver interventions that aim to increase cervical cancer screening. In one study, community health workers were instrumental in overcoming participants’ distrust of researchers [29]. Traditional recruitment approaches, such as physician referrals and the use of cancer registries, can be successfully complemented by internet-based recruitment on social media [30, 31]. Recruitment at trusted community gatherings or cultural centers – places where community leaders can encourage the importance of participating in research has also been associated with improved recruitment rates [17]. Recruitment and engagement strategies have been previously described in published studies, e.g., [32–34]. However, few have described in detail how their interventions were designed, implemented, and conducted to maximize recruitment and retention rates of Chinese Americans [35, 36]. In fact, a systematic review of effective strategies for recruiting and retaining ethnic minorities in health-related research excluded studies among Asian Americans because “their relatively small population size, combined with marked heterogeneity with respect to language, nationality, and acculturation status, makes the sparse literature on their engagement in research difficult to interpret and worthy of a separate and focused analysis” [36], p. 6. As such, the purpose of this article is to detail the strategies that we have devised for improving recruitment, engagement, and retention rates of Chinese Americans by drawing upon our experiences with conducting two cancer interventions in New York City. We hope this article will help researchers by providing a template and tools for designing culturally sensitive cancer interventions for Chinese Americans and other difficult-to-reach populations.

METHODS

Overview of the NYU Stomach Cancer Prevention Study

The purpose of the NYU Stomach Cancer Prevention Study, a randomized controlled trial, was to assess the efficacy, adoption, and impact of an intervention to improve adherence to recommended stomach cancer prevention guidelines for at-risk Chinese Americans in New York City (NYC). Chinese American adults with a confirmed clinical diagnosis of Helicobacter pylori infection, which is the strongest risk factor for stomach cancer, were recruited from safety net hospitals and family health clinics in NYC. All patients received culturally adapted materials in Chinese on H. pylori and stomach cancer prevention. However, the patients who were randomized into the intervention group were also linked with a bicultural and bilingual community health worker who navigated them through H. pylori medication adherence and provided them with stomach cancer prevention educational sessions over a 6-month intervention period. Participants were interviewed by research staff at baseline and during the second and sixth months of the intervention. A multi-sector, community-engaged advisory group guided the development and adaptation of the intervention, stomach cancer prevention materials, and educational curriculum [37]. Data collection for the Stomach Cancer Prevention Study is currently ongoing.

Overview of the HOPE study

The purpose of the Helping Oneself by helPing othErs (HOPE) study was to evaluate the feasibility and preliminary efficacy of a culturally adapted version of the Expressive Helping intervention [38] for Chinese American cancer patients and survivors in a single-arm pilot study (i.e., all participants received the intervention). The Expressive Helping intervention is a narrative intervention designed to improve psychological well-being and quality of life by facilitating emotional disclosure and support giving over writing/voice-recording. The intervention was completed over four brief structured writing/voice-recording sessions over four consecutive weeks. Expressive Helping consisted of two components: three sessions of private emotional disclosure modeled after the Pennebaker expressive writing paradigm [39], and one session of “peer helping” in which participants shared their cancer experience, providing encouragement and guidance, with the knowledge that their narratives will be shared with and used as a resource for other Chinese cancer patients. Chinese-speaking adults with various cancer types were eligible to participate. Psychological well-being was assessed at baseline and at 1, 3, and 6 months after the writing/voice-recording sessions were completed. Following the principles of community-based participatory research CBPR; [40], the HOPE study was designed in collaboration with community stakeholders and conducted with the support of community organizations and partnerships. Data collection for the HOPE study was completed in October 2020. Both the HOPE and Stomach Cancer Prevention studies were approved by the Institutional Review Board.

Recruitment Strategies

Table 1 lists the recruitment strategies that were used across the HOPE and Stomach Cancer Prevention studies. The following sections describe the three themes that represent the strategies used for maximizing recruitment: building community relationships, developing culturally sensitive materials, and establishing good first impressions.

Table 1.

Recruitment strategies

Theme	Activity	Example	HOPE Study	Stomach Cancer Prevention Study
Build community relationships	Partner with community clinics and hospitals	Working with physicians who share the same culture to participants to promote smooth collaboration	✔	✔
	Leverage existing relationships to foster new connections	Draw on the networks of existing physician partners to develop new connections with other physicians and community partners	✔	✔
	Maximize community partner buy-in	Invite physicians and community partners to become co-authors in academic presentations and publications	✔	✔
	Show appreciation to community partners	Provide honoraria and/or culturally appropriate gifts to partners (e.g., moon cakes during Lunar New Year or Mid-Autumn Festival) as a token of appreciation for their time and participation in the study		✔
	Solicit Physician’s help with recruitment	Encourage physicians – often the most trusted health authority in Chinese communities – to let eligible patients know about the study	✔	✔
Develop culturally sensitive materials	Advertise in ethnic-specific newspapers	Contact reporters to write a story about the intervention	✔	✔
	Translate study materials	Develop language-specific materials (e.g., postcards, flyers) in simplified Chinese, traditional Chinese, and English	✔	✔
	Improve cultural relevance	A picture of multiple hands joining together was used in a flyer to emphasize the prosocial motivation that is characteristic of collectivism	✔	✔
Establish good first impressions	Begin relationship building	Each research team member are trained with the cultural knowledge and skills (e.g., motivational interviewing) to respond to common questions raised by Chinese participants.	✔	✔
	Develop cultural competence	Each research team members go through a series of group and individual role-play training sessions to practice interactions with participants.	✔	✔
	Promote flexibility	Accommodate participants’ irregular work schedules and medical check-ups by offering availability during late nights and weekends.	✔	✔
	Increase diversity of research team	Recruit a diverse team of Chinese American staff who speak different Chinese dialects (e.g., Cantonese, Mandarin, Fujianese, Toishanese) to reach the diverse ethnic groups within the Chinese American community	✔	✔

Note. ✔ indicates that the strategy was used in that study.

Building community relationships

Developing equitable relationships with community members, organization representatives, and key stakeholders, as well as involving them in all aspects of the research process, is the central tenet of CBPR [40]. Given that academic researchers are often considered “outsiders” of the community in which the research is taking place, building community relationships and harnessing the community’s strength as “insiders” of the community is critical. As researchers, we hold a cultural humility mindset [41] by accepting that despite our best intentions, we may not fully understand the community that we intend to serve. As such, our community partners who are more equipped with the knowledge and skills to serve this community can remedy this limitation.

The majority of participants in the HOPE and Stomach Cancer Prevention studies were recruited through physician referrals. Physician referrals have been traditionally described as an ineffective recruitment strategy for ethnic minorities due to the limited time patients have during each medical encounter, language barriers, and lack of interest in research [34, 42]. However, we innovated and improved upon this recruitment method in a variety of ways. First, we sought out and collaborated with physicians who share similar goals with our research (i.e., eliminating cancer health disparities among Chinese Americans). We focused our outreach on physicians who serve largely Chinese American patient populations and are bilingual Mandarin- or Cantonese-speaking themselves. Notably, it was the first time for many of our physician partners to be approached by researchers to be an integral part of a research study. Second, we sent monthly study updates (e.g., whether a study milestone was reached) to the physician partners who provided referrals to keep them engaged in our study. Third, we recognized that Chinese Americans hold their doctors in high regard and tend to defer to their medical providers; thus, they were more likely to participate in our research study with the physician’s encouragement. As such, we maximized the buy-in from our physician collaborators by frequently checking in with them to troubleshoot potential recruitment issues and ensured that they were not overburdened by these additional research responsibilities. Our intention to be mindful and responsive to the demands on their time, the needs of their clinic, and their own research interests was instrumental in developing a strong partnership. Throughout the entire research process, we solicited their feedback and shared decision-making and ownership of the intervention. In this vein, we recognized their contribution and role as equal partners in the research studies by inviting them to be co-authors on academic publications and presentations.

Develop culturally sensitive recruitment materials

In order to reach the large percentage of Chinese Americans in the USA who are limited in English proficiency, both studies were conducted entirely in Mandarin Chinese or Cantonese. Every participant interaction, whether in-person or by phone, was completed with bilingual research staff. When developing the questionnaires, we selected and prioritized scales that were previously translated and validated for use with Chinese populations. For scales that were not translated, pairs of bilingual English and Chinese-speaking staff translated the scales into Chinese. The newly translated scales were then reviewed by another bilingual staff by comparing it to the original English version to ensure the equivalence of meaning across the two versions. When developing narrative scripts (e.g., screening process), consent forms, and recruitment materials (e.g., flyers), we created these materials in Chinese to ensure that the phrasing and sentence structures sounded natural to native Chinese speakers. Throughout this process, we sought feedback from our partners at various community organizations to ensure that the study materials were culturally sensitive and appropriate.

We intentionally designed recruitment materials that were respectful, inclusive, and sensitive to the values and norms of the Chinese immigrant community. Previous research has found that using culturally appropriate materials is associated with greater recruitment and retention rates [32, 43]. Through feedback from our community partners and our experience in conducting research with this community, we learned that Chinese individuals often choose to participate in research to be of service to others (e.g., helping the researchers accomplish their goals), and less commonly for their own personal gain. On the recruitment flyer for the HOPE study, we displayed a picture of hands joining together in a circle and advertised that one outcome of the study is that we will be able to develop better resources for the Chinese community by learning about their experiences. The picture and message were congruent with the Chinese cultural values of prioritizing community and collective well-being [2]. Moreover, we also included the logos of our research institutions in our recruitment and study materials to increase the prestige of our research study [44].

In the Stomach Cancer Prevention study, we invited a reporter from a major Chinese-language newspaper to publish a story about our study. Ethnic-specific newspapers continue to be a popular medium through which most Chinese immigrants receive their news today. In one study, 84% of Chinese immigrants reported getting their health information from ethnic-specific newspapers [45]. After completing the interview, the reporter published a short description of the research team, as well as the significance and potential impact of the Stomach Cancer Prevention study. The community health workers then used the newspaper article as a conversation opener to introduce the study to potential participants. Participants shared with us that the study was more prestigious, important, and convincing because it was reported in a trusted newspaper.

Establish good first impressions

The careful selection and training of our research teams to make good first impressions is a vital reason for our recruitment success. Without a strong first impression that earns the trust and consent of the potential participant, the cultural adaptations that were made throughout the study would be wasted. For the HOPE study, members of the research team were bilingual or trilingual. In total, a team of six research assistants (four spoke Cantonese, English, and Mandarin; two spoke Mandarin and English) was trained to screen, consent, and follow-up with participants. Prior to enrolling participants, the research team underwent a series of group training sessions in which they role-played how they would respond to various questions raised by participants. For example, they practiced how they would interact with a participant who is distrusting of research. Once data collection started, the research team continued to meet weekly to troubleshoot difficulties and brainstorm solutions for any challenges they encountered with their participants.

The Stomach Cancer Prevention study was delivered by trained bilingual community health workers who spoke English and Mandarin/Cantonese. As immigrants to New York City themselves, the community health workers had a unique understanding of the history, values, and strengths of Chinese Americans in New York City [46]. Prior to delivering the intervention for participants, they each received a 35-hr formal training on motivational coaching, cognitive-behavioral theory, and compassionate communication [47]. To attend to the diverse needs of the Chinese population, they also learned counseling skills to provide Mental Health First Aid [48], health coaching, and SMART goal setting [49]. In addition, they participated in workshops on smoking cessation, nutrition, and social isolation among the elderly. The training program provided the community health workers with culturally relevant knowledge and skills to maximize their cultural competence.

Lastly, we communicated our sensitivity to participants’ busy schedules by offering availability during weekday evenings and weekends. This flexibility was particularly important as time burden has been identified as a significant barrier for research participation among immigrant and minority populations [42, 50].

Engagement and retention strategies

Table 2 lists the engagement and retention strategies used across the HOPE and Stomach Cancer Prevention studies. The following sections describe the three themes that represent the strategies used for maximizing engagement and retention: attending to cultural sensitivity and relevance, fostering relationships, and using technology.

Table 2.

Engagement and retention strategies

Theme	Activity	Example	HOPE Study	Stomach Cancer Prevention Study
Attend to cultural sensitivity and relevance	Cultural metaphors	Avoid assigning participant IDs with the number “4” because “4” is also pronounced similarly as death in Chinese	✔
	Send study newsletters	Send newsletters with study updates, team member biographies, and healthy recipes	✔
	Protect confidentiality	Avoid asking sensitive questions (e.g., immigration status) to improve trust	✔	✔
	Thank you cards	Write personal messages in Thank You cards when sending compensation to participants	✔	✔
	Compensation	Provide compensation in the form of gift cards to popular Chinese supermarkets in participants’ neighborhoods		✔
Foster relationships	Provide partners with regular status updates	Send physician partners updates on recruitment and retention rate, etc.	✔	✔
	Assign one research team member to each participant	Each participant is assigned a single research team member as a contact person	✔	✔
	Increase frequency of interactions	Send a small gift and personal message to encourage retention between longer follow-up times		✔
Use technology	Engage participants through WeChat	Provide participants with personal attention, encouragement, general health information and reminders through WeChat		✔

Note. ✔ indicates that the strategy was used in that study.

Attend to cultural sensitivity and relevance

One of the most important strategies for maximizing engagement and retention is by integrating Chinese cultural values into our materials and messaging. Chinese individuals tend to endorse fatalistic beliefs about cancer, believing that cancer is decided by fate and cannot be treated [28]. Furthermore, mentioning words related to death around a cancer patient is taboo and strongly discouraged. Thus, in the HOPE study, we avoided assigning participants with IDs containing the number “4” (e.g., “104,” “114”) because the number “4” is pronounced similarly to the word “death” in Mandarin and Cantonese Chinese.

Another way we increased engagement and retention was by sending participants a HOPE study newsletter. In the newsletter, we fostered a sense of community by sharing study progress updates, a food recipe, a message from the research director, and short biographies and pictures of the study staff. Sharing personal information about the research staff (e.g., hobbies) signaled to the participants our willingness to connect with them. In addition, diet is perceived to be a pivotal contributor to one’s health in Chinese culture. It has been documented that Asian American cancer patients expect specific guidance on their diet. However, physicians tend to only provide vague recommendations [51]. Our newsletter included a healthy recipe that helped address this gap and communicated to participants our care for them. Anecdotally, participants shared their appreciation for the newsletter and for the opportunity to contribute to a research project. Finally, throughout the studies, we underscored confidentiality and avoided sensitive questions (e.g., immigration status) to earn trust from our participants.

Prior to the Stomach Cancer Prevention study, culturally relevant materials on healthy diet and nutrition were largely unavailable. As such, we developed and tailored educational materials on stomach cancer prevention for the Chinese immigrant population [37]. For example, we communicated the importance of reducing alcohol intake by creating new graphics depicting measurements for common Chinese alcohol, such as baijiu. We also created recipes tailored to Chinese Americans, such as low sodium Chinese dishes, and a palm-sized magnet depicting an example of a balanced and healthy plate of common Chinese dishes. Educational materials that are sensitive to culture and relevant for the target population are crucial for engaging and retaining participants in research.

Foster relationships

Chinese culture values personal relationships (i.e., guanxi in Chinese) and emphasizes the development of interpersonal trust before moving forward with professional activities [52]. This is particularly important when working with Chinese communities who have been historically overlooked, minimally reached and engaged in research, and may continue to harbor mistrust and misinformation about research, including fears of being experimented on as a “guinea pig” [53, 54]. To build guanxi, we assigned each participant of the HOPE and Stomach Cancer Prevention studies with a designated research assistant or community health worker, respectively. This dyadic pairing of a specific research team member with a participant provided an opportunity to develop a working relationship over time. Indeed, our physician collaborator informed us that many participants in the HOPE study thanked him for introducing them to the study because they enjoyed the relationship they’ve built with the research assistant over the 7 months they were enrolled in the study.

Because it was common for family members to answer the phone when we called the participant, family members who may be naturally guarded or protective of the participants can also develop working relationships with the designated research team member. We built these relationships with participants and their family members by recording information about them that may assist with rapport building and retention. For instance, we noted down travel plans and family members’ names. The support of participants’ family members was instrumental for the successful engagement and retention of participants in our studies. Moreover, the previously described intensive role-plays and training sessions that the research team completed were vital for the successful relationship and rapport building with participants and their family members [17]. described that when a participant’s family is aware of the research study they are participating in, the “gatekeeping” phenomenon of family members shielding the participants from researchers becomes considerably reduced.

To maximize retention, participants received frequent phone call and/or text reminders to complete their scheduled intervention activities. We contacted participants using their preferred communication methods (e.g., phone calls or texts). A significant portion of the reminder phone calls and texts was spent identifying barriers to research participation and addressing participants’ concerns and needs. For instance, we provided directions to participants who did not know the location of the nearest mailbox for returning their completed survey materials. Participants also received monetary compensation following each major step of the study (as opposed to only at the end of the study), such as after completing the four weeks of writing in the HOPE study and at each follow-up time point. When we distributed participants’ incentives over postal mail, we included personalized written “thank you” letters. At study completion, participants of the HOPE study were mailed a resource sheet that we created, which included a mindful breathing exercise, healthy food recommendations, and the contact information of local cultural centers and clinics. The personalized thank you letters and resource sheets were sent to strengthen rapport and their sense of contribution by demonstrating our care and gratitude.

Use technology

The Stomach Cancer Prevention study capitalized on the popularity of the WeChat messaging app, with over one billion Chinese users worldwide, to provide participants with personal attention, encouragement, health information, and reminders. For instance, participants received general health information and resources through links sent over WeChat. With their consent, participants were able to communicate with their assigned community health workers over WeChat for general appointment reminders and to receive refreshers on health information delivered in the intervention. Previous studies have found increased retention rates when personalized reminder letters were sent over postal mail [42, 55]. Given the speed at which personalized reminder texts can be sent over WeChat, compared to postal mail, the use of technology is likely to be beneficial for this population.

RESULTS

Enrollment/retention of the Stomach Cancer Prevention Study

The following recruitment and retention data for the Stomach Cancer Prevention study reflect participants who were recruited prior to the interruptions caused by the COVID-19 pandemic. Seven physician collaborators referred a total of 123 Chinese adults with positive H. pylori tests. We were unable to make initial contact with 7.3% (n = 9) due to incorrect contact information or no returned calls. Of the 114 individuals we screened, we enrolled a total of 60 Chinese individuals who were randomized to the intervention group (n = 32) or the control group (n = 28), representing a 53% enrollment rate. Of the 54 individuals who declined to participate, the most common reasons cited were no interest in participating in research or did not have time. The majority of the participants (97%) enrolled in the study endorsed Mandarin, Fuzhounese, or Cantonese as the primary language they spoke. Most participants were underserved, as evidenced by sociodemographic characteristics: 63% had an annual income of less than $25,000, and 80% had not completed their high school education. Of the 60 enrolled participants, 54 completed the 2-month interview, and 51 completed the 6-month interview, representing retention rates of 90% and 85%, respectively.

Enrollment/retention of the HOPE study

We approached and screened by phone a total of 115 Chinese adults diagnosed with cancer. The majority (n = 106; 92%) were referred to us by three physician collaborators, with the remainder identified through newspaper ads and word-of-mouth. Of the 115 individuals, we enrolled a total of 57 Chinese adults with cancer diagnoses into the study, representing a 50% enrollment rate. The most common reasons for declined participation were a lack of interest in participating in research or a lack of time. Of the 57 enrolled participants, nine individuals (16%) did not begin or finish the four-weekly writing/voice-recording sessions. Two individuals stated that they were too busy, two individuals indicated that the COVID-19 pandemic was too distressing, and five individuals could not be reached. The majority of the enrolled participants (n = 48; 84%) completed the four writing/voice-recording sessions. Of the 48 participants who completed the intervention, 46 completed the 1-month follow-up survey, 43 completed the 3-month follow-up survey, and 43 completed the 6-month follow-up survey, representing retention rates of 96%, 90%, and 90%, respectively.

CONCLUSION

In this paper, we detailed how we designed and implemented strategies for maximizing recruitment, engagement, and retention rates of Chinese American participants in two cancer intervention studies. The recruitment and retention of Chinese Americans in clinical research studies involve significant efforts by the investigators and their community partners who are conducting the research. Although the strategies we used in these trials resulted in adequate enrollment and retention rates, it is important to note areas for improvement and potential limitations of our strategies. First, while we achieved a respectable 53% and 50% enrollment rate in each intervention, respectively, there were still a portion of individuals who declined to participate due to a lack of interest or time. One reason could be attributed to the fact that the first interaction between the research staff and participant took place over the phone, potentially resulting in more hesitance to consent to the study. It may be possible that a higher enrollment rate would be achieved by assigning a research staff member to be physically present in the clinic. However, given the small number of potential participants that would be to enroll per day, this would have been a costly strategy. Nonetheless, we achieved a notable 50% enrollment rate among a sample of underserved Chinese immigrants with limited financial resources and high school education. Second, because both intervention studies relied heavily on our physician collaborators to refer participants, another limitation could be that some recruitment strategies would be less applicable to researchers who are unable to identify appropriate physician collaborators (e.g., a Chinese-speaking health care provider does not exist in their city/neighborhood). In these scenarios, we recommend that researchers can adapt our physician collaboration strategies to focus on forming collaborations with other community leaders and stakeholders. For example, collaborations can be formed with leaders from Chinese-speaking churches, grocery stores, and community centers.

The overarching themes that unite the strategies we described are relationship building, both with key stakeholders and participants, and having the flexibility and creativity to address cultural and social norms. Building relationships with community members and identifying physicians interested in becoming collaborators required an investment in time, patience, persistence, and meeting them where they are – which is in alignment with one of the foundational principles of CBPR to bring in “insiders” of the community [40]. As community gatekeepers, we learned that establishing relationships with physician collaborators was essential to our work. We learned that once we have established the relationships with our physician collaborators and community organizations, recruiting from this community becomes easier over time and lends itself to subsequent research projects. We believe these efforts will result in better science and more appropriate and equitable representation of ethnic minorities in clinical research. Finally, we hope that our experiences with the HOPE and Stomach Cancer Prevention studies will serve as a blueprint to help other researchers conduct culturally sensitive health intervention research for Chinese Americans, as well as for other marginalized and underserved populations.

Funding

The HOPE study was supported by the NYU Clinical and Translational Science Institute (NIH/NCATS 1UL1 TR001445) and NYU Institute of Human Development and Social Change Seed Award. The Stomach Cancer Prevention study was supported by NIH National Institute on Minority Health and Health Disparities (U54MD000538), NIH National Center for Advancing Translational Sciences (UL1TR001445), and NIH National Cancer Institute (P30CA016087).

Compliance with Ethical Standards

Authors’ Statement of Conflict of Interest and Adherence to Ethical Standards: All authors declare that they have no conflicts of interest.

Human Rights: All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent: Informed consent was obtained from all individual participants described in the study.

Transparency Statements: This study was not formally registered and the analysis plan was not formally pre-registered.

Data Availability: De-identified data from this study are not available in an a public archive. De-identified data from this study will be made available (as allowable according to institutional IRB standards) by emailing the corresponding author. There is not analytic code associated with this study. Materials used to conduct the study are not publicly available.