We used a number of approaches to identify, solicit, and enroll 154 participants into our research studies, and our results suggest that the key to successfully accessing our population depended on identifying the appropriate organizations in the local community that were involved with caregivers and seniors. We engaged these organizations and their professional networks in the research process, which resulted in reaching our enrollment goals.
We can attribute the success in enrollment due to organizational snowballing to a few key factors. First, we partnered with organizations that were recognized, respected, and trusted institutions in the community. These agencies had a long-standing presence in their neighborhoods, which brought us immediate credibility as researchers. The partnerships were essential to gaining access to individuals who historically have been underrepresented in research and perhaps not familiar or trusting of the research process or of academic personnel.
Second, establishing a research partnership between academia and community relied heavily on a champion within a community organization. All of the CBOs involved in our studies had at least one person who advocated for us, either as liaisons with other organizations or as direct partners in the research. The organizational champion believed in the importance of the research and the benefits of the research to the community. Our community partners did not receive financial compensation for their collaboration with us, and they absorbed incidental expenses. Although these expenses were likely modest compared with the major costs associated with the research, they underscored the importance of having an advocate within the organization to invest in research partnerships that did not directly benefit them.
Third, we successfully enrolled immigrant and U.S.-born Mexican female caregivers by working with CBOs that directly served or had access to this population. Working with these organizations allowed us to tailor our recruitment efforts and increased our chances of finding potentially eligible participants. This targeted approach eliminated the additional time and expense involved in screening large numbers of noneligible community residents. This may help to explain why less time was spent overall in Study Two for these activities compared with Study One because our targeted enrollment efforts primarily occurred for Study Two. Additionally, we solicited study participants and collected data at the premises of most organizations, thereby minimizing the barriers of participation (Wendler et al., 2006
Conducting research in a community setting requires time and resources. Almost two person-days per week and more than two and one-half person-days per week were dedicated to recruitment-related activities, in the community and office, for Studies One and Two, respectively. We were still not able to capitalize on all the leads we were given by sources because of budgetary constraints in personnel.
We learned that future research projects need to allow for the time and personnel costs and material expenses associated with conducting field-based research. It is challenging to place our findings within the context of other research studies because of the limited literature on costs associated with community-based research, especially in immigrant Latino populations. One study examined three recruitment methods for a case-control study of lung cancer in San Francisco and the average number of hours spent on enrolling Latino controls. Cabral and colleagues (2003)
found community-based recruitment strategies required 40 min per enrolled control, a fraction of the time it took in our studies. However, the case-control study may have limited comparability to our study because it was not clear if the 40 min included the researcher's time to reach the community or just the time spent on screening and consenting participants once in the community.
We found variability between our studies in the costs and time related to carrying out the research. Study One compared with Study Two cost more on a per-participant basis and took three times as much time on average to enroll a participant in the study. One explanation could have been the difference in study design. For Study One, we primarily used one-on-one recruitment strategies. For Study Two, we held targeted recruitment events in addition to the one-on-one recruitment strategies, which allowed us to screen and enroll multiple individuals at once. However, it is not possible to disaggregate the effects that different recruitment strategies had on enrollment results. We are therefore unable to determine which factors resulted in a lower screener response rate for Study 1 (79%) compared to Study 2 (92%) yet a higher percentage of eligible participants completing interviews (95%) compared to questionnaires (82%).
There are limitations to this study. First, although our findings were based on a systematic review of study documents, we acknowledge that not all aspects of either research study were completely documented. We could only report findings based on the completeness and accuracy of available study-related materials. We expect therefore that our results are conservative estimates of the actual time and expense associated with conducting research in a community-based setting. Second, reaching our target enrollment numbers could have reflected the inducement of a monetary incentive to participants (Erlen, Sauder, & Mellors, 1999
), rather than successful research partnerships between UCLA and the community. It could be that our recruitment efforts with CBOs provided a level of coercion among potentially eligible residents who were not interested in participating but did so out of fear of not receiving future goods or services or of hurting their relationships with the agencies. To minimize the possibility of this problem, we kept participants’ names confidential and did not inform the CBOs which of their clients were eligible for the studies or actually participated in them. Third, the personnel costs associated with our study may only be generalizable to similar research settings in high cost-of-living areas in the United States. We attempted to address this issue in two ways. We provided the number of hours associated with the recruitment activities, at the university as well as in the community setting. We also showed the percentage of total project time during the studies’ recruitment periods dedicated solely for the purposes recruiting and enrolling participants. Lastly, we did not use a full CBPR framework for our studies. The community was not involved in developing the research questions or study designs for our projects. However, CHIME's CAB participated in the research process by determining that our projects on elder caregiving were priorities in the community. L. Trejo and E. Jimenez also contributed in the conceptualization of the current study.
However, sustaining partnerships can be equally challenging because many nonprofit agencies run on minimal resources, and the added expenses of collaborating on research projects can be cost prohibitive for some of them. The restrictions in allowable project expenses by funding sources further exacerbate this situation by not permitting academic institutions to direct some of the resources to community partners for infrastructure support. Infrastructure is critical for supporting relationships between academic institutions and community groups that otherwise would not be formed. Our studies capitalized on infrastructure already in place at the academic institution. The RCMAR/CHIME is an example of using federal funds to build capacity for establishing and stabilizing academic–community partnerships. The RCMAR/CHIME's cultivated relationship with the Los Angeles City Department of Aging strengthened our ability to establish and maintain relationships with our community partners. This bond is an example of creating a natural link of the academic institution (UCLA) to the local community. We need similar models that are more resource driven to develop and sustain academic–community partnerships on an ongoing basis.
Our study provides further evidence that conducting research in community settings is possible. Future research should not shy away from including underrepresented populations to answer important questions, especially as it relates to disease-specific health disparities. We recognize that every population is somewhat unique, but our study offers lessons on a partnered research approach that can be applied to community-based research with other populations. Researchers need to identify the community organizations that work directly with the desired population and engage them into the research process to effectively enroll participants into their studies. Champions within these organizations can be especially key to providing critical linkages to other organizations in the community. We partnered with the Alzheimer's Association for our studies. Researchers looking to recruit Alzheimer's caregivers or patients might consider their local chapter of the Alzheimer's Association whereas researchers looking to recruit diabetics might consider the American Diabetes Association or their local diabetes clinic.
Building academic–community relationships require time, patience, physical presence, respect, and commitment, elements frequently in short supply in a busy academic environment (Norris et al., 2007
). Increased support for longer grant periods and capacity building would allow academics and community organizations to fully engage in a CBPR process to identify the priority research questions for their community and the methods for successfully carrying out the research.