Recruiting Chinese American adolescents to HIV/AIDS-related research: A lesson learned from a cross-sectional study
Article Outline
- Abstract
- 1. Introduction
- 2. Purposes of this article
- 3. Method
- 4. Results
- 5. Discussion
- 6. Conclusion
- Acknowledgments
- References
- Copyright
Abstract
The purpose of this article was to report identified barriers and challenges experienced in the recruiting process of Chinese American adolescents to a cross-sectional HIV/AIDS-related study. Snowball sampling method was used to recruit Chinese American adolescents from Chinese American communities in a U.S. Midwestern state. Barriers and challenges to recruitment were reviewed and analyzed from Chinese cultural perspectives in the hope of aiding researchers and health care providers understand and facilitate future recruitment of Chinese Americans for HIV/AIDS prevention studies. Barriers to recruitment were found related to the taboo topic of sexual issues in Chinese culture, unawareness and denial of HIV/AIDS risks, authoritarian parenting style in Chinese culture, and the required active consents. Facilitating factors of recruiting Chinese American adolescents to future HIV/AIDS prevention research or intervention programs are discussed. Information provided in this article may increase nurses' awareness of various barriers that they might encounter when they conduct research or address HIV/AIDS-related topics of Chinese American adolescents.
1. Introduction
It has been suggested that there is an imperative need to deliver culturally sensitive programs for HIV/AIDS prevention (Faryna and Morales, 2000, Jemmott et al., 1999). However, Chinese Americans, making up the largest ethnic group of Asian Americans (U.S. Census Bureau, 2009a), have been rarely separated from a combination of various Asian and Pacific Islanders ethnic populations in studies related to HIV/AIDS preventions. Given the fact that there are many distinct and separate cultures within Asian American community, this misclassification makes Chinese Americans an underrepresented population in HIV/AIDS research and has resulted in limited public awareness and deprived HIV/AIDS prevention service for this population (CDC, 2008, Jemmott et al., 1999, Zaidi et al., 2005).
Successful recruitment of adequate number of participants within a reasonable time frame is essential for research study. Inappropriate and ineffective recruiting processes prolong the period of data collection, threaten validity of research findings, increase research cost, and exhaust available research resources (Villarreul, Jemmott, Jemmott, & Eakin, 2006). To oppose health disparities in the United States, recruiting participants with a minority ethnic background into health care research is essential. However, recruitments of ethnic minority into research are usually challenging and costly. The current studies involving ethnic minorities have highlighted the need to develop and evaluate recruitment strategies that are targeted to these ethnic minority groups (Daunt, 2003, Villarreul et al., 2006). Many researchers have examined the challenges and solutions to problems of recruitment of several different ethnic populations such as Black, White, Latino/Hispanic, Filipino Americans, and Korean Americans, and numerous barriers have been documented, as well as recommended recruitment strategies (Daunt, 2003, Han et al., 2007, Villarreul et al., 2006). The reviewed literature is short of studies that document recruitment strategies or challenges specific to enrolling Chinese Americans. Lack of this information not only weakens our capabilities to develop knowledge about Chinese American youths but also inhibits health care professionals' abilities to efficiently approach Chinese American adolescents and deliver culturally sensitive HIV/AIDS prevention programs. This article intends to report the experiences obtained during the process of recruiting Chinese American adolescents for an HIV/AIDS-related survey. Barriers and challenges to recruitments were reviewed and analyzed from Chinese cultural perspectives in the hope of aiding researchers and health care providers understand and facilitate future recruitment of Chinese Americans for HIV/AIDS studies and preventions.
1.1. Recruiting ethnic minorities to research
Understanding of cultural background is critical to a successful recruitment of ethnic minorities (Aroian et al., 2006, Daunt, 2003, Villarreul et al., 2006, Weiss and Weiss, 2002). Many factors, such as language barriers, family and community gatekeepers, ethnic stereotyping, degree of acculturation, issues of immigration, and cultural values and beliefs, may produce barriers to recruiting and retaining ethnic minorities (Jemmott et al., 1999, Weiss and Weiss, 2002). Recruiting rates and retention may vary by location, culture, and ethnicity. In the study of Harachi, Catalano, and Hawkins (1997), findings also indicated that the most effective strategy to recruit different ethnic participants differed in relation to ethnic group. To reduce language and cultural barriers to recruiting and retaining minorities for research, having a research team who understands the participants' culture or has the same cultural background has been recommended. Collaborating with local community agencies or leaders is also recommended for the successful recruitments of minority participants (Aroian et al., 2006, Taylor-Pillae and Froelicher, 2007, Weiss and Weiss, 2002).
1.2. Recruiting adolescents to research
Recruiting adolescent minorities into research involves additional challenges because adolescents who are younger than 18 years are considered as vulnerable minors. Parental consents and adolescent assents are required for adolescents who are younger than 18 years to participate in research, and this requirement is usually a barrier to research targeting adolescents. The institutional review board (IRB) is likely to be particularly precautious when children are involved, and topics related to sexual behaviors and drug uses also raise special concerns (Weiss & Weiss, 2002). Reed, Thistlethwaite, and Huppert (2007) approached sexually active girls who were 13–21 years old for a cross-sectional Sexually Transmitted Infections (STI) study. The refuse rate was 58%, and the study found that the parental barriers appeared to significantly prohibit eligible adolescents participating in the research. In the study of Kao, Guthrie, and Loveland-Cherry (2007), 15- to 17-year-old Taiwanese American girls and their mothers were recruited into a qualitative study to investigate their perceptions about sexual health. The convenience samples were recruited from Taiwanese-run Chinese schools. Ten out of the 19 mothers who were approached and met research criteria participated in the study. The reasons for refusals included the girls' busy schedule and the mothers' concerns related to the sensitive topic.
1.3. Strategies of recruiting adolescent participants
Recruiting adolescents through schools to participate in studies is usually used and considered an efficient and less costly strategy (Weiss & Weiss, 2002). Successfully accessing adolescents through school setting requires a series of negotiating procedures with administrators of schools to get approvals and supports for the data collection. These procedures usually involve a hierarchical structure of educational systems. It is critical to get approval from the top of the structure, such as the superintendents of school districts or the director of the educational department in government. In one study on HIV/AIDS prevention targeting Chinese adolescents (Lee, Salman, & Fitzpatrick, 2009), the researchers recruited 734 Taiwanese adolescents through seven high schools located at the biggest metropolitan in Southern Taiwan. Approval and support from the director of the City Bureau of Education in Taiwan prior to data collection and collaboration with the principals and teachers of selected schools were considered essential for the successful recruitments.
Although many studies successfully recruited their adolescent participants through school settings, this recruiting strategy becomes less practicable in the areas where the target adolescent population is small or scattered. Snowball sampling is usually used when the research topics are sensitive (such as sexualities) or the number of potential participants is low and the researchers do not have access to sufficient numbers of the specific target population (Browne, 2005). Along with the snowball sampling method, approaching potential participants through churches, community groups, and personal contacts of the researcher is a strategy often used to recruit ethnic minority adolescents (Aroian et al., 2006, Kao et al., 2007).
1.4. Recruiting Chinese American adolescent participants
Collecting data from Chinese American youths produces vast and special challenges because Chinese American adolescents are not only an ethnic minority but also a group of vulnerable minors. Many factors could influence the results of recruitment efforts; however, studies that describe the challenges encountered in the recruitment of Chinese American adolescents into research are currently lacking.
2. Purposes of this article
The purposes of this article were to (a) describe barriers and challenges to recruiting Chinese American adolescents to HIV/AIDS-related studies by examining experiences from a pilot study conducted in a Midwest state of the United States and (b) discuss and recommend strategies of recruiting Chinese American adolescents to decrease barriers to recruitment in future HIV/AIDS prevention research or intervention programs.
3. Method
Recruitment data on enrolling Chinese American adolescents into an HIV/AIDS-related study were used and reported in this article. The researchers and research assistants reviewed and discussed all challenges that had been experienced during the process of recruitment. Self-reported reasons of refusals by Chinese American adolescents, parents, or Chinese American organizations or associations were documented and qualitatively analyzed. Barriers to efficiently recruiting Chinese American adolescents to the HIV/AIDS-related study were identified and described from Chinese cultural perspectives.
3.1. Overview of the study
The purpose of this cross-sectional pilot study was to explore the relationships among several psychosocial factors and HIV/AIDS-related risky sexual behaviors among Chinese American adolescents in the United States. Data were collected in the State of Ohio. This study was approved by the IRB.
3.2. Sample
The Chinese American high school adolescents who were able to speak and read English, were studying Grades 10 to 12 in American schools in the United States, had no self-reported cognitive impairment or diagnosis of a major depressive disorder, and whose parents are both with Chinese cultural background (from China, Taiwan, or Hong Kong) were eligible to participate in the study.
3.3. Sampling method and data collection
Snowball sampling method was used for the recruitment, and both adolescents and parents were approached by the Chinese–English bilingual researcher or the research assistants who have Chinese cultural background and understand Chinese culture well. The directors or presidents of Chinese language schools and Chinese–Taiwanese American organizations or associations in the relative bigger cities in Ohio, such as Cleveland, Columbus, Cincinnati, and Dayton, were contacted for collaborations. The leaders of these Chinese American organizations or groups who were willing to provide support and assistance to this study were asked to forward e-mails to their members or post advertisements on the places where their members gather. Several Chinese restaurants, Chinese markets, and Chinese churches were also asked for help on referring potential participants and posting the recruiting advertisements. Personal contacts of the principal investigator and the research assistants were also used. Chinese American adolescents who participated in this study were asked to refer or introduce their friends to the researchers.
The confidentiality, anonymity, and voluntary participation were assured orally and in writing. All adolescents who agreed to participate in the study were asked to sign the informed assents, and active parental consents were required for adolescents who were younger than 18 years. The participants decided the places where they felt comfortable to complete the self-administrated research questionnaires. Participants were asked to place their completed questionnaires into an envelope and seal it before returning them to the researchers. Every adolescent participant was given a $5 gift certificate as a thank you for his or her participation.
4. Results
Less than 40% of Chinese American cultural organizations or groups in Ohio (including Chinese American associations, churches, language schools, Chinese dancing schools, and Buddhist groups) agreed to provide assistance for the recruitment. Several Chinese language schools and Chinese dancing schools showed interest in this study and provided help in recruiting participants. However, most of the Chinese American students who attended the Chinese language schools are young children who were not eligible to participate in the study.
A total of 24 Chinese American adolescents (17 female and 7 male participants) with an average age of 16.75 years (SD = 1.07 years) were successfully recruited during the 6 months' period across 2007 and 2008. The rate of refusals among eligible Chinese American adolescents was approximately 70%. About 50% of parents refused to give their parental consents even if their children agreed to participate in the study. No participants withdrew from the study after agreeing to complete the questionnaires or after the questionnaires have been completed.
4.1. Barriers to recruitment
4.1.1. The taboo topic of sexual issue in Chinese cultureIn traditional Chinese culture, sexuality is a taboo topic and considered as a private matter that should not be discussed with other persons except the spouse. Discussions about the topic of sexuality are not common among family members with Chinese background, especially between parents and children. Some Chinese American parents indicated to the researcher that they are not willing to let their teenaged children have any chance to discuss or think about sexually related topics; they believed that discussions of sexually related topics may encourage early sexual behaviors. Many Chinese–American parents think that their children should have received adequate sexual education from schools. Consequently, it is not necessary to have sexually related discussions with their children at home.
Not only adolescents who disagreed to participate in the study mentioned that they felt embarrassed about the research topic and questions in questionnaires, but also some parents who refused to give their parental consents mentioned that they felt uncomfortable about the topics related to sexuality. For example, one mother of the Chinese American adolescent said, “It is so embarrassing to talk about this [sex]. I don't want to talk about this, and I don't want my child to get involved in this kind of topic.”
4.1.2. Unawareness and denial of HIV/AIDS risksAlthough the importance and the potential beneficial contributions of the study to the Chinese American society were explained and stressed, the principals, presidents, or leaders of Chinese American organizations or groups either refused to respond to the researcher's request or showed no interest in supporting this study. Many leaders of Chinese American organizations or groups believed that HIV/AIDS infection is not a significant issue among Chinese American adolescents and that there is no need for HIV/AIDS prevention in Chinese American communities. One of the leaders strongly rejected to provide any assistance for this study because he believed that Chinese American adolescents were at no risk of contracting HIV/AIDS infection. This leader said, “Our Chinese American children here are good children, they don't have any risk to be infected. I don't want to bring this issue to the community.” Some parents who refused to let their children participate in this study also indicated that they believed that their children are not sexually active. Many Chinese American parents believed that their children will not have sexual experiences before marriage, and therefore, they are at no risk of contracting HIV/AIDS.
4.1.3. Authoritarian parenting style in Chinese cultureAlthough the confidentiality was explained and emphasized, several Chinese American parents agreed to let their children participate in the study but mentioned to their children that they would like to review the questionnaires when they are completed. Chinese American parents believed that they have the authority to inspect what their children wrote on the questionnaires, and they thought that this is showing a good parenting practice. This authoritarian parenting style influenced by Chinese culture is one of the barriers to successfully recruit Chinese American youth in this study.
4.1.4. The required active consentsOne of the barriers to recruit Chinese American adolescents was related to the requirements of active parental consents in this study. Adolescents felt embarrassed to bring the letter and consent forms to their parents due to the sex-related topic. Some adolescents and parents who agreed to participate in the study asked whether it is all right not to sign the consent and assent forms. They were worried that signing the consent forms will bring trouble to them. The study failed to recruit adolescents who or whose parents agreed to participate in the study but were not convinced to sign the informed consent forms.
4.2. Effectiveness of strategies utilized for the recruitments in this study
Among the utilized recruiting strategies, advertising fliers or e-mails have shown little effect on recruiting Chinese American adolescents to the study. In our study, neither Chinese American adolescents nor their parents responded to the fliers or mails. Although most of the Chinese American organizations, associations, or groups refused to get involved and provide assistance, optimal outcomes were obtained when the community leaders provided assistance for recruiting participants for the study.
The most efficient recruitment method among those that have been used for this study was recruiting potential participants with assistances from Chinese American adolescents who had participated in the study. With parents' permissions, several adolescents who participated in the study were asked to help the researcher to recruit their friends or classmates for the study. About 50% of the participants in this study were successfully recruited with Chinese American adolescents' assistances.
5. Discussion
Many Chinese Americans in the United States are immigrants and are indisputably influenced by their original Chinese cultural background (U.S. Census Bureau, 2009a). Adolescents who are involved in adjustment between two or more different cultural values are susceptible to poor psychosocial adjustment and behavioral problems (Beadnell et al., 2003, Eyou et al., 2000, Soriano et al., 2004, Timotijevic and Breakwell, 2000). Chinese American adolescents may be experiencing threats from cultural conflicts between the Chinese culture and the Western American culture and may be at a high risk of engaging in risky sexual behaviors and being infected with HIV/AIDS. Conducting more research is needed to aid our understanding and increase public awareness about issues of HIV/AIDS in Chinese American youths. This article addresses several barriers and facilitators of recruiting Chinese American adolescents to an HIV/AIDS-related survey. Congruent with previous studies that addressed barriers in ethnic minorities, the culture-related issues were found as the core causing barriers to successful recruitment of the Chinese American adolescent participants in this study.
5.1. Barriers and challenges to recruitments
Sexual topics being taboo in the Chinese culture was the major barrier to recruiting Chinese American adolescents. This study is similar to previous studies targeted on other Asian populations, which noted that sensitive topics were an issue for successful recruitment (Kao et al., 2007). This barrier might not only present a wall for researchers to access potential participants and deliver intervention programs but also prohibit Chinese Americans to receive HIV/AIDS-related teaching and services.
The unawareness of HIV/AIDS risks in the Chinese American population appeared as an underlying cause of the high refusal rate from the parents and leaders of Chinese American communities. Findings from a previous study (Mui & Reid, 1999) also indicated that Chinese-speaking participants did not perceive HIV/AIDS as a serious health concern in their Chinese American community. It is also possible that the denial of HIV/AIDS risks is related to Chinese Americans' fears of being stigmatized because there are conflicts between traditional Chinese cultural belief about sexual practices and behaviors related to HIV/AIDS infection. The unawareness and denial of HIV/AIDS risks imply that there is an urgent need of delivering education about HIV/AIDS prevention to Chinese Americans.
The authoritarian parenting style in Chinese American families was also identified as one of the barriers for the recruitment. Chinese culture is deeply influenced by the Confucianism views that have great impact on the patterns of family interactions and communications. In Chinese culture, children are expected to respect their older family members and obey the parents' orders and wishes; on the other hand, it is common that Chinese parents hold legitimate power to control their children in many aspects of the children's lives (Chao, 2000). Chinese parents consider parental inspection, involvement, governance, and supervision of the child as a presentation of parental concerns and caring. These parental supervisions could be a barrier for recruitments and a protecting factor for Chinese American youths' risky sexual behaviors. Research has indicated that early, clear parent–child communication about sexual health is positively associated with adolescents' delay on sexual initiation and making responsible decisions about sexual behaviors (CDC, 2008). The failure of recruitment caused by the authoritarian parenting style also indicates that the parents–children communication about sex is absent in those families. Interventions to facilitate Chinese American parents' communications with their children about sex may be needed.
Experiences learned from this study also found that the requirement of active consents or assents had been one of the major barriers to effectively recruit Chinese American adolescents to the HIV/AIDS prevention study. Congruent with the reports in literature, the requirements of active parental consents or passive parental consents have been found to result in different response rates (Tigges, 2003). The response rate was reported to be 30%–60% when active parental consents were required; however, the passive parental consents turned out to have a 93%–100% response rate (Tigges, 2003). Mistrust of research has also been found as a barrier to participation by minority groups (Daunt, 2003). Several Chinese American adolescents and their parents agreed to participate in this study but disagreed to sign the consent forms. This might indicate a mistrust of researchers and the research. However, it is also possible that their refusal to sign the consent forms reflects their lack of exposure to research and consent procedures. Signing names on documents is considered as a very serious issue for Chinese. Great precaution will be taken before signing name to documentation. It is very difficult for them to understand the need of consent procedures, and the purpose of the consent form is to protect the minor and participants in any research study. Similar situation was also found in a study targeted on Korean Americans (Han et al., 2007). Consent procedures were perceived as something “suspicious” rather than “protecting” in these populations. The requirement of the active consent in addition to the barrier related to the sensitive and sexual topic might have increased the challenges of the recruiting process for the study.
5.2. Strategies used for the recruitments
The most successful recruitment strategy was associated with the Chinese American adolescent participants' assistance. The developmental period of adolescence makes the matter of trust and distrust more significant in the recruiting process (Murray, 2000). The trusting relationships with their peers possibly have contributed to these adolescents' decisions-making process about whether or not to participate in the study. Moreover, previously built friendships between the Chinese American participants and their peers could have given advantages to the recruiting process.
Having personnel who understand the Chinese culture and language involve in the data-collecting process was found essential but inadequate for successful recruitment for this study. The researcher and research assistants have Chinese cultural background, able to speak both Chinese and English, and are members of Chinese American organizations and groups. The Chinese cultural background and language capability of the researcher and research assistants benefited the recruiting process on communicating and establishing initial relationship with the Chinese American parents, especially that some Chinese American parents are not able to communicate without speaking Chinese. However, it is still difficult to instill trusting relationship with the adolescents and their parents and to establish the partnerships with these community agencies for the recruitment for the study because sex-related topics are considered as a very private, sensitive, and embarrassing issue in traditional Chinese culture. Sex-related topics, such as HIV/AIDS preventions, require special interpersonal relationship to establish a higher degree of trust between researcher and participants than do other non-sex-related studies.
Dissimilar to studies that targeted the mainstream of American adolescents, it was not an option of strategy to recruit Chinese American adolescents from school settings, especially in the places that are not mainly Chinese American clustered areas. Although the snowball sampling method was used in this study, the researcher and research assistants experienced difficulties in keeping on finding new “starts” for new “balls” during the recruiting process. The Chinese Americans are geographically widely scattered in the state where data were collected, and most of the Chinese American adolescents or their parents do not have wide social networks within the Chinese American communities. The characteristics of the target population made the snowball sampling method useful but insufficient for efficient recruitments. Establishing partnerships with local Chinese American communities could be essential for a more successful recruitment process.
5.3. Recommendations for recruiting Chinese adolescents to future HIV/AIDS studies
To decrease the barriers and to facilitate the process of accessing the Chinese American adolescents for HIV/AIDS prevention study, future studies regarding the perceptions of HIV/AIDS risks in Chinese Americans are needed. It is crucial to educate Chinese American community leaders about the importance of conducting HIV/AIDS prevention studies and programs for the Chinese American population. Interventions focusing on Chinese American parents and leaders of Chinese American communities might be a prerequisite to approaching Chinese American adolescents for HIV/AIDS prevention studies. Providing sexual education to Chinese American parents and community leaders is needed prior to implementing future HIV/AIDS prevention programs that target the Chinese American adolescents.
Providing Chinese Americans benefits that are not directly related to the purpose of recruitment and research, such as health promotion and disease prevention programs and other health affairs, may be a strategy to gain the trust of the Chinese American communities and to develop long-term partnerships for future research and HIV/AIDS preventions. Besides, offering educational workshops on general health with sexual health topics included rather than sex- or HIV/AIDS-specific educational programs in the beginning might be more acceptable to Chinese Americans and could be a useful approach to build trusting relationships for future HIV/AIDS-specific research or interventions.
Moreover, utilizing Internet survey (or computer-assisted survey) and passive consents might be useful to reduce Chinese American parents' and adolescents' fears of experiencing embarrassments in participating in a sex-related study. In addition, it might be helpful for convincing the principals, presidents, or community leaders to provide support if their schools, organizations, or associations could receive financial support from the fund of the study. Furthermore, some adolescents indicated that they were not interested in participating in the study because the money or the $5 gift certificate is too little. Forty to fifty dollars of compensation were suggested by these adolescents for their willingness to participate in similar studies in the future.
Barriers identified in this study need to be carefully interpreted because the target population was only Chinese American adolescents living in the State of Ohio, a non-Chinese American clustered state. Although several barriers identified are similar with those found in other ethnic minority populations, there may be significant differences in recruiting Chinese American adolescents who are living in the states or cities where Chinese American are mainly clustered, such as New York and California. More understanding of barriers and facilitators to recruit Chinese American adolescents in different areas of the United States is needed to provide a better understanding of effectively approaching Chinese American youths for HIV/AIDS prevention research in the United States.
6. Conclusion
Little research is available on effective recruitment strategies of Asian participants, although Asian populations are fast growing in the United States (U.S. Census Bureau, 2009a, US Census Bureau, 2009b). This article addresses critical gaps in our ability to access Chinese American adolescents for HIV/AIDS prevention research by analyzing the recruitment issues and strategies utilized in a pilot study conducted in Ohio. The information provided in this article contributes to our knowledge of barriers and strategies for recruiting Chinese American adolescents for HIV/AIDS research. It also adds to the accumulating evidence that building community partnerships, having bilingual and cultural personnel involved, and being culture sensitive are important aspects of successful participant recruitment for HIV/AIDS-related prevention studies. More studies are needed to develop efficient strategies to deliver HIV/AIDS prevention interventions to Chinese American adolescents. However, providing educational programs that target Chinese American parents and community leaders to enhance their awareness of HIV/AIDS risks and to improve parents–children communication regarding sex-related issues may be the first step to successfully approach and recruit Chinese American adolescents for future HIV/AIDS prevention studies.
Acknowledgments
This study was financially supported by Research Initiation Grants funded by the Research and Sponsor Programs at the Wright State University. The authors also express their deep appreciation to all research assistants and Chinese American adolescent participants in this study.
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PII: S0897-1897(10)00006-6
doi:10.1016/j.apnr.2010.02.001
© 2012 Elsevier Inc. All rights reserved.
