key: cord-0763366-11t5pq9o authors: Ta Park, Van; Grill, Joshua D.; Zhu, Jeanette; Nguyen, Khue; Nam, Bora; Tsoh, Janice; Kanaya, Alka; Vuong, Quyen; Bang, Joon; Nguyen, Nhi Cristina Y.; Cho, In Hyang; Gallagher‐Thompson, Dolores; Hinton, Ladson; Meyer, Oanh L. title: Asian Americans and Pacific Islanders’ perspectives on participating in the CARE recruitment research registry for Alzheimer's disease and related dementias, aging, and caregiving research date: 2021-07-19 journal: Alzheimers Dement (N Y) DOI: 10.1002/trc2.12195 sha: 03cb553d41239893e6e126714703b6838bac7a92 doc_id: 763366 cord_uid: 11t5pq9o INTRODUCTION: This study elicited Asian Americans and Pacific Islanders’ (AAPI) perspectives about recruitment strategies/messaging for participation in an aging, Alzheimer's disease and related dementias (ADRD), and caregiving research recruitment registry. METHODS: Using a mixed methods design, CARE (Collaborative Approach for AAPI Research and Education) conducted 14 focus groups (N = 123) with AAPI cultural groups (Asian Indian, Chinese, Filipino, Japanese, Korean, Samoan, Vietnamese) in different languages. Descriptive statistics and thematic qualitative analyses were conducted. RESULTS: Mean age of participants was 54 years (median: 61; range 18–80), 66% were female, and 81% were foreign‐born. Themes of consideration for recruitment emerged: (1) culturally/linguistically appropriate outreach in culturally specific spaces, (2) motivations for research participation, and (3) approaches to outreach and recruitment methods. Within each of these themes, there were ethnic differences in specific strategies/approaches reflected as subthemes. DISCUSSION: Recruitment and messaging strategies should be tailored uniquely for each targeted AAPI group, with a thorough understanding of the cultural/linguistic factors that facilitate research participation to increase AAPI participation in ADRD, aging, and caregiver‐related research. Alzheimer's disease (AD) is the sixth leading cause of death in the United States, 1 but the fourth leading cause in California. 2 While the number of Americans with AD will balloon to 14 million and become increasingly diverse by 2050, 1 California already is home to a large and ethnically diverse population of AD sufferers that anticipates the future of the nation. Recently, findings from the Lancet Commission indicate that "12 modifiable risk factors account for around 40% of worldwide dementias, which consequently could theoretically be prevented or delayed." 3 Several large-scale studies are currently underway to evaluate if modifying these risk factors is associated with reduced incidence of dementia in diverse populations; however, specific outreach efforts to include Asian Americans and Pacific Islanders (AAPI) in this work are limited. AAPI are the most rapidly growing racial group of older Americans at risk for AD and related dementias (ADRD). 4, 5 By 2030, the number of California's AAPI living with AD will triple to nearly 200,000, comprising 17% of California's total AD population. 6 Disparities exist in knowledge about ADRD among AAPI 7 and AAPI ADRD caregivers' experience disparities in depression, burden, and physical health compared to non-Hispanic White caregivers. 9, 10 It is therefore imperative that underserved AAPI populations be educated, engaged, and enrolled in ADRD research. 11, 12 Despite the growing AAPI population and the mandate to engage racial/ethnic minorities in research, 13 AAPI participation remains limited. 14 While the AAPI population is the fastest growing racial population in the United States, 15 research involving AAPI receives less than 1% of clinical funding 16 resulting in growing health disparities. To address this problem in California and beyond, researchers must develop methods to better recruit AAPI. AAPI are heterogeneous in English language proficiency, culture, nativity, and socioeconomic status, 17 all of which contribute to health disparities. Data suggest that while AAPI are interested in being engaged, barriers must be addressed to improve ADRD research participation. [18] [19] [20] Clinical research recruitment is a consistent challenge to successful medical research. [21] [22] [23] Without the inclusion of diverse AAPI, research findings may be underpowered and result in bias or scientific error. 24, 25 Clinical research recruitment requires outreach efforts that are timeconsuming and costly, 23 and successful recruitment of underserved populations requires significant engagement with community partners who are trusted sources of information. 23, 26 To address the underrepresentation of AAPI in ADRD research, we developed Collaborative Approach for AAPI Research and Education (CARE), a research recruitment registry focused on health across the lifespan in these unique communities. Recruitment registries are repositories of individuals who have expressed willingness to learn about studies for which they may be eligible. 27 Registries represent increasingly common tools to aid ADRD research recruitment 28 but critical questions, such as how best to use this tool to diversify study populations, remain unanswered. 27 CARE aims to increase AAPI participation in research studies by building a research recruitment registry of 10,000 AAPIs who would be willing to be contacted for health research studies. As the initial phase of building CARE, this article reports on focus groups we conducted with diverse AAPI communities in multiple languages (English, Mandarin, Cantonese, Korean, and Vietnamese) to advance our understanding of the best strategies and messaging for recruiting AAPI into the registry and eventually, future ADRD, aging, and caregiving-related research. This is a mixed-methods research that includes quantitative data from a survey with qualitative data from focus groups with AAPI adults to examine perspectives about recruitment strategies/messaging for participation in an ADRD, aging, and caregiving research recruit- Focus groups are a form of "group interview" that generates data from participants. 32 Advantages include convenience (of interviewing several participants at one time versus individually) as well as obtaining "group interaction" data. In other words, participants' comments may build off one another's comments (hence, a focus group "discussion"), participants may also feel encouraged to speak, and participants may express similar and/or different perspectives from one another to potentially provide a fuller illustration of participants' lived experiences. Moreover, focus groups "do not discriminate against people who cannot read or write." 32 Fourteen focus groups were conducted, initially in-person (4 groups) but due to COVID-19, the remaining planned focus groups were transitioned to an online, live format (10 groups; see Table 1 ). In-person focus This questionnaire inquired about participants' race, ethnic/cultural group, sex, year of birth, nativity, years lived in United States, marital status, type of medical insurance, employment, education, household income and size, and English-language proficiency. We also asked if they had ADRD or were an ADRD caregiver. A total of 69 participants completed the survey online, while 54 filled out paper surveys due to lack of internet access and/or limited understanding of how to complete an online survey. The online survey used Research Electronic Data Capture (REDCap) tools hosted at the University of California, San Francisco (UCSF). 33, 34 REDCap is a secure, web-based software platform designed to support data capture for research studies. For those who completed paper surveys, research staff later entered their data into REDCap. The focus group guide included key questions with optional prob- Quantitative data obtained from the sociodemographic questionnaires were analyzed using descriptive statistics, which were provided for the overall sample and separately for each cultural group. The data were analyzed using STATA 16 software. 35 Thematic analysis was con- A total of 123 participants participated in the 14 focus groups (Table 2) . Overall, more women (65.9%) than men (34.1%) participated, and the mean age was 54 years old (median was 61 and range was 18-80). More than half (57.3%) were married or living with a partner, with the remaining reporting that they were single (19.5%) or divorced/separated/widowed (21.1%). More than three quarters (78.1%) of the participants had some college education or graduated from college. The majority of the participants (81.0%) was foreign-born and had lived in the United States for an average of 23 years. About 27% said they were not fluent or spoke some English. Most (86.2%) said they did not have ADRD or memory loss, 3.2% said they did, and 13.8% Less than high school said they were not sure. About 1 in 10 reported that they were caring for a family member or loved one who had ADRD or memory loss. and more used Medicare (n = 9, 75%) as a source of insurance, compared to other groups. Qualitative analysis of the focus groups revealed three emergent themes (Table 3 ). These included: (1) culturally/linguistically appropriate outreach in culturally specific spaces, (2) motivation for research participation, and (3) approaches to outreach and recruitment messaging. Table 4 displays the subthemes for each target cultural group. 3.2.1 Theme 1: Culturally/linguistically appropriate outreach in culturally specific spaces A common theme across all groups was a need for outreach/ engagement to be conducted in culturally specific spaces. This included festivals, cultural events, and spiritual spaces (temples and churches) that were accessible for the community in their preferred languages. The need for culturally and linguistically appropriate outreach was mentioned in every focus group. Several groups expressed the concern that AAPI are often perceived as a monolithic group in the United States. Participants stressed that Asian cultures are diverse, outreach should be targeted specifically to each Asian culture (Table 3 , Subtheme 1.1). Issues relating to linguistic accessibility were often discussed in focus groups. Participants expressed that linguistic accessibility was an important barrier to research participation within their communities. Many indicated that having a researcher who can speak the language within their community would not only reduce the barriers to recruitment, but also incentivize people to participate (Table 3 , Subtheme 1.2). Linguistic accessibility was less of an issue among the English-speaking focus groups (Asian Indian, Filipino, and Chinese; Table 4 ). All focus groups recommended using community spaces for the purposes of recruitment and advertisement. Across the groups, participants reported that community spaces where AAPI congregate, such as churches, community centers, and grocery stores, were important places for the exchanges of information ( Korean: "I was also thinking about senior centers is one place where you can also recruit. I know many Korean Americans go there weekly, and if you were to do that, then you need someone who can speak Korean fluently and has all the forms in Koreans, so there is lower thresholds for them to participate." Samoan: "I would recommend that there is a tab specifically for all the Pacific Islander languages. So, there should be a tab where Samoans with access to technology can click on it and everything is translated correctly in Samoan, in our language. There should be a tab that's accessible for Tongan. There should be a tab that's accessible for Fijian and so-on and so-forth." Vietnamese Vietnamese-speaking: "The greater incentives, the better. Recruiting staff has to be able to speak in Vietnamese because it's easier to get the information across." Japanese: "I just thought the best way in my opinion was honestly through organizations that are Japanese centered." Korean Korean-Speaking: "Many Korean community organizations such as culture centers, senior club, church group, clubs can be useful, too." Asian Indian: "I'll say . . . go to the senior centers where the Indians are, like ICC Milpitas, caters to almost 500 seniors there; so senior center is a good place to start with; temples, flyers in the temples." Samoan: "I think the best way to contact people is my own church." Japanese: "Also, the Buddhist church is almost all Japanese." 2. Motivation for research participation Chinese Cantonese-speaking: "Second, I want to learn some new information that I can share with my friends or groups." Asian Indian: "I wanted to know more about Alzheimer's, and how does it happen, what can you do to prevent it and not to have it." Samoan: "I also think that research is very important in keeping the longevity of our people-the Samoan people. Especially educating our people I think is something very important so that we can see and get the help that we need." Japanese: "Also the sandwich generation you have people that are like me caring for parents and then also caring for your own children and you know being in that position it's-it has to be-you know something of a benefit." Vietnamese: "We are seeing them either have Alzheimer's or dementia and it is a heavy burden for the children or the relatives to take care of those people with Alzheimer's or dementia. So hopefully our participation will give the research more information and hopefully by the time we age or retire, if we somehow get Alzheimer's or dementia, they will have some treatment, especially for the older generation." Japanese: "I think the Japanese culture is really rooted in a sense of obligation to take care of your family, take care of your elders." Korean: "To me, Alzheimer's is important because our parents or grandparents are going to be aging in the near future and we are the ones who need to be like, have the knowledge to take care of them and how to like, prevent them to have their memories lost. Or slow down the program, so it interested me." Asian Indian: "See, we are going through old age, and we may be encountering Alzheimer's down the line and that is the challenge. Be prepared if something happens to me or my dear ones." (Continues) Vietnamese: "I want to join because it relates to the Vietnamese group and I want to give my personal data to the research so they can have more data to compare to." Samoan: "I think this is important for us-I think it's important that we are part of the research because-specifically for Pacific Islanders, a lot of the times we get lumped in with-the data gets aggregated. . . . We're just smaller in numbers compared to our larger Asian American brothers and sisters and community." Chinese Mandarin-speaking: "I feel blessed. There is funding for studying the health of Asian Americans and drugs." Korean Korean-speaking: "In the past, a group of doctors went to a community and said this and that is needed for that community. Now, if a research wants to help a community, the community's voice should be heard more. That is why I am participating in today." 3. Approaches to outreach and recruitment messaging Korean Korean-Speaking: "I think social media such as Facebook, Instagram, or KakaoTalk can effectively introduce focus group or research to people in the community. Social media is very popular among young people. If the research is introduced through social media, the information can be shared with many people." Chinese Mandarin-speaking: "I found a lot of people use Line or WeChat. They share video with each other." Filipino: "Yeah, some, like what she said, like vloggers, people who are influencers. If they partake in something like this, it will influence everyone, their viewers." Chinese Cantonese-speaking: "Newspapers like WorldJournal . . . places with free advertisements. Or even Chinese channels, like channel 8, sometimes they made do an interview of your organization." Japanese: "I think most first-generation Japanese subscribe to JCTV so if you created a public service announcement and tried to run that through that station you would probably get more awareness." Asian Indian: "Asian newspaper, India Post, India West, regional Punjabi papers and Hindi newspapers." Chinese Cantonese-speaking: "It's very simple. For example, the word 'care,' to most people elicits no emotion/feelings. But if you were to talk about it as if you were talking about their family and friends, and how they may be able to help them by joining, I think you would elicit more interest from people." Vietnamese Vietnamese-speaking: "It would have to be the right person at the right time. For instance, if it's a study about Alzheimer's, you need to find people with Alzheimer's. The right time means asking people when they are not busy, if you ask them to sign up when they are picking their kids from school, they won't have time to listen to you." a All selected quotes are from English-speaking participants, unless otherwise specified. sentiment endorsed was that research participation should provide resources and information to help members of their own community. Other motivations included personal curiosity and the desire to learn more about ADRD and clinical research ( These family obligations included efforts to help loved ones with dementia, as well as concerns for loved ones and family members at risk for ADRD. Of all the subthemes that emerged, these two (intergenerational impact and the importance of caregiving) were the least commonly reported from all of the focus groups (Table 4 ). Ten of the 11 focus groups expressed a desire to represent their community in research and to benefit their community through intellectual enrichment and the sharing of information ( (combination of English-and Vietnamese-speaking) and Japanese shared all four categories of motivation (Table 4 ). Each focus group endorsed a multifaceted and multimedia approach to recruitment messaging and outreach (Table 3 , Subtheme 3.1). Participants in each group mentioned the use of social media platforms such as Facebook, Instagram, WhatsApp, and WeChat. Participants in some cultural groups shared that they used a social media platform unique to their cultural group, such as KakaoTalk among Koreans. Several groups suggested implementing recruitment messaging on traditional AAPI-specific media such as newspapers and radio programs ( Little work has been done to engage AAPIs, the fastest growing racial/ethnic group in the United States, into aging and ADRD research. CARE is attempting to remedy this gap by developing a registry of diverse AAPIs that can be recruited into future research. Based on findings from the focus groups described above, recruitment and messaging strategies will be tailored uniquely for each target group, to encourage their enrollment into the CARE registry. The three broad themes that emerged in this analysis appear to be shared across AAPI populations, although there was also variability in subthemes that suggest cross-ethnic differences as well. Similar to previous research, focus group findings indicated that outreach and recruitment of different AAPI groups for research participation had to be culturally and linguistically appropriate. Religious and spiritual institutions (temples, churches) were good sources of engaging AAPI into research because these are locations that AAPI frequent for spiritual practices as well as for community building. "Going to where the people are" is a crucial part of engaging AAPI. 38 Moreover, language is an important component of being able to make research accessible to AAPI populations. It has been understood for some time that having recruitment materials in the language that diverse AAPI can understand is important to engage them, as well as having research personnel who speak the language of participants. 39 In terms of motivation for research participation, AAPIs were motivated by reasons as diverse as wanting to have more knowledge and understanding about cognitive impairment and ADRD, as well as helping to benefit families who are caregivers of older people but also have children of their own, or who are in the "sandwich generation." Another motivation was derived from a sense of needing to have one's voice or representation in research. Our last emergent theme was in the area of outreach and recruitment messaging. Similar to previous study findings, focus group participants mentioned a variety of ethnic-specific media for outreach. 40 A novel finding was the use of personal stories and narratives to connect potential participants to actual people that they could identify with. Some groups discussed the intergenerational impacts of research participation as a motivating factor, which is not surprising given that family values, such as filial piety and respect for elders, are common in multigenerational households among AAPI. Community representation also was among the strongest motivator of participating in research. This suggests that AAPI are aware of their lack of representation in research and the need for inclusion so that results can be applicable to them. The variability across focus groups could be due merely to the conversations present in the group, but it may also demonstrate the variability across cultural and ethnic groups in perspectives about research engagement and recruitment. Variability in focus group themes highlight the need for engagement that is culturally specific and treats AAPI as a heterogeneous group rather than a monolithic one. The onset of COVID-19 restrictions and the current ongoing pandemic limited our ability to directly connect with participants through inperson focus group sessions. However, we were successful in our ability to conduct the remaining focus groups over Zoom given this limitation. The ability to connect over Zoom, without requiring participants to spend additional time and resources to travel to the group site, are noted benefits from previous research. 42 Additional unique strengths of this study include the engagement of seven AAPI cultural groups and the ability to employ staff who spoke five languages, thus overcoming one of the key barriers that prevent AAPI from research participation-lack of language compatibility. In addition, this work underscores the value of community-academic partnerships: without the strong support and involvement of the various agencies who work directly with these AAPI groups, this work would not have been able to succeed. The multiple academic and community partnerships were necessary to build the registry and to have such wide reach, especially during the pandemic when in-person outreach opportunities were almost non-existent in California. Due to resource limitations, however, we were restricted in our ability to conduct the study in other AAPI cultural groups and in other AAPI lan-guages. Last, this is the first research registry of such a diverse group of AAPI available in five different languages. It will pave the way for the meaningful inclusion of AAPI in research on aging, ADRD, and family caregiving. 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