Community-Engaged Research With Latino Dementia Caregivers: Overcoming Challenges in Community Advisory Board Development

Abstract

Background and Objectives

Latinos caring for a person with Alzheimer’s disease and related dementias (ADRD) have the highest prevalence of caregiving. Yet, they are less likely to benefit from evidence-based interventions given their continued underrepresentation in ADRD-related research. Community advisory boards (CABs) have the potential to address barriers to research for underrepresented communities; however, there are complexities to establishing and sustaining CABs. This article describes how our work addressed challenges in CABs related to unbalanced power relations, language barriers, the value of time, and low research knowledge and health literacy.

Research Design and Methods

Nine Latino CAB members, including older Latino caregivers, were trained in a comprehensive program designed to increase knowledge about health research methods and ethics, cognitive health, and cultural adaptation methods. Members completed pre- and post-training measures of Alzheimer’s disease knowledge, attitudes, and beliefs toward research, and a satisfaction survey.

Results

Results from the satisfaction questionnaire indicated that the program was well received. CAB members increased their knowledge regarding the management of behavioral and psychological symptoms of dementia and dementia-associated risk factors and treatment. Positive changes in members’ attitudes toward research included increased willingness to participate in trials and subject protection measures.

Discussion and Implications

Formalized training in research conduct and ethics and health literacy is a promising strategy to reduce challenges in establishing and maintaining CABs and can also optimize CAB impact to address gaps in older Latino ADRD caregiving research.

The older Latino population in the United States continues to grow and is expected to constitute 21% of the older adult population by 2060 (Administration for Community Living, 2020). Compared to other racial/ethnic groups, older Latinos in the United States face many health care disparities including higher rates of unmet care needs (Lin & Liu, 2023). An area that requires further advancement in Latino older adult health care is Alzheimer’s disease and related dementia (ADRD) family caregiving. Latinos have elevated rates of ADRD diagnosis (Alzheimer’s Association, 2023) and also have the highest prevalence of informal caregiving for a person with ADRD (Family Caregiver Alliance, 2016). Compared to other racial/ethnic groups, Latino caregivers are more often in high-intensity care situations, provide more hours of care, and are more likely to live with the person for whom they care (Rote & Moon, 2018). Moreover, Latino caregivers report worse psychological well-being, including depression, stress, and burden relative to other racial/ethnic ADRD caregivers (Liu et al., 2021; Sorensen & Pinquart, 2005).

There are further complex dynamics at play in the lives of Latino ADRD caregivers as proposed by the Sociocultural Stress and Coping model (Aranda & Knight, 1997). This model emphasizes that caregiving stress is not solely a product of the demands associated with caring for a loved one with dementia, but is intricately intertwined with sociocultural factors. Variations in caregiver health can be shaped by the caregiver’s and care recipient’s background, the care recipient needs, values including family support, and coping strategies (Rote et al., 2019). This highlights the significance of considering cultural nuances and values to better comprehend the experiences of caregivers from diverse populations.

Despite urgent calls to address the significant health inequities among Latino ADRD caregivers and attend to the sociocultural intricacies of this population, they continue to be underrepresented in ADRD-related research (National Academies of Science, Engineering, and Medicine, 2021). Barriers to research engagement for Latino ADRD caregivers (i.e., language, mistrust in academia, Latino underrepresentation in research staff) as well as recommendations to address these challenges have been documented in the past two decades (Gallagher-Thompson et al., 2003; Parker et al., 2023; Quinones et al., 2023). Nonetheless, investigators continue to report inadequate recruitment and retention of Latino ADRD caregivers in research (Dilworth-Anderson et al., 2020), which poses a significant challenge to intervention development and adaptation that is culturally attuned. The continued exclusion of Latino caregivers in clinical trials limits the generalizability and applicability of ADRD caregiving research to this population, which ultimately affects their care and well-being. Thus, a critical need to identify mechanisms to meaningfully involve communities in the research process exists.

Community-engaged research approaches ensure that the research is relevant to the community of interest (Dickert & Sugarman, 2005; Iveniuk et al., 2023). Community advisory boards (CABs), in particular, are one strategy to increase the representation of diverse individuals in research. Previous work has engaged members of historically marginalized communities in CABs to inform research studies (Newman et al., 2011). This effort can ultimately improve the engagement of underrepresented communities in clinical trials and build a supportive environment for research (Saluzzo et al., 2023). When working with specific racial/ethnic groups, a population-specific CAB composition (Morin et al., 2003) with members who share a common identity, language, and culture can be crucial to close the gap in Latino ADRD caregiving research as it situates the caregiving context within the Latino culture (Aranda & Knight, 1997; Knight & Sayegh, 2010).

While CABs can play a pivotal role in addressing barriers to research for marginalized communities, there are complexities to establishing and sustaining CABs. The most salient challenges faced by CAB members are (a) unbalanced relationships between academics and local communities, (b) language barriers between research group and community members, and (c) availability limitations based on the volunteer nature of membership (Cramer et al., 2018; Mijumbi et al., 2023; Zhao et al., 2019). Perhaps most pressing, is that (d) CAB members report limited knowledge about conducting research and specific medical conditions of interest in studies as a challenge to their role (Mugenyi et al., 2021; Zhao et al., 2019). When the expectations of the researchers are incongruent with the capabilities of and competing demands on CAB members, it can exacerbate community mistrust in research and hinder the development of researcher–community partnerships (Brown et al., 2020).

Existing ethical principles and guidelines for community–academic partnerships suggest that an important strategy to avoid such disconnection is to train community members in the various aspects of the research process (Sadler et al., 2012). Thus, developing a training curriculum for CABs on research methods and ethics and health literacy can better support their capacity and comfort level for engaging in research activities (Mitchell et al., 2020). Importantly, this specific training facilitates CAB members’ knowledge and understanding of participant protection measures in research (Manda-Taylor, 2013), a key ethical consideration when working with underrepresented communities. A well-trained and engaged CAB can further facilitate the sustainability of the community–university partnership and ensure the programmatic study of health inequities and health promotion in underserved populations.

The purpose of this article is to describe how we addressed some of these previously identified challenges in community-engaged research—namely power differentials in relationships, language barriers, the volunteer nature of CABs, and low research knowledge and health literacy—when establishing a CAB to guide the adaptation of a dementia caregiver intervention for Latinos. Specifically, we will (a) describe our CAB and its role, (b) describe a training program developed to educate our CAB members about the conduct of research and cognitive health, and (c) present training outcomes.

Design and Methods

Study Context

Several psychoeducational programs focused on skill and mastery building were developed for ADRD caregivers and have proven to be effective (Belle et al., 2006; Hepburn et al., 2007; Mittelman et al., 2004). However, there is a dearth of interventions that include Latino caregivers in their clinical trials (Arévalo-Flechas et al., 2014) or that address Latinos’ unique cultural needs (Chavez-Dueñas et al., 2020). Culturally attuned adaptations and implementations of available interventions for the Latino community are needed to address this critical gap. To this end, our early-stage development study aimed to establish a CAB with Latino community members, including Latino ADRD caregivers and professionals who work with ADRD patients and caregivers, to guide the cultural adaptation of an online skills- and mastery-building intervention for older ADRD caregivers. The University of Rochester Institutional Review Board approved this study.

Community Advisory Board Composition

The CAB is comprised of nine Spanish-speaking Latinos/Latinas (Table 1). CAB members are between the ages of 33 and 65 (CAB average age 57.1), predominantly female (88.9%) and Puerto Rican (77.8%). Members are three older Latina family ADRD caregivers, three Latinos who do not currently identify as primary ADRD caregivers, and three Latinas who provide community and health services to older Latinos (one neurologist, one Director of older Latino community services, and one dementia educator from a community organization). CAB members not identifying currently as primary caregivers reported either providing instrumental support to a primary caregiver from a distance, or working in the past as a nurse at an older adult care program, allowing us to capture diverse experiences in Latino caregiving practices.

Table 1.

Community Advisory Board Demographics

Characteristics	Community Advisory Board
	Caregivers (n = 3), mean (SD)/n (%)	General population (n = 3), mean (SD)/n (%)	Community leaders (n = 3), mean (SD)/n (%)
Age	63.7 (1.15)	60.7 (4.9)	47 (12.3)
Gender
Female	3 (100%)	2 (66.7%)	3 (100%)
Male	—	1 (33.3%)	—
Cultural background
Puerto Rican	3 (100%)	3 (100%)	1 (33.3%)
Colombian	—	—	1 (33.3%)
Mexican	—	—	1 (33.3%)

Notes: n = number of participants; SD = standard deviation.

Potential CAB members were identified through community outreach activities delivered at a Latino senior center and by community partners who personally referred potential members. To be eligible to serve on the CAB, members had to identify as Latino/Latina and be able to speak and read Spanish fluently. As reflected by our membership composition, we targeted invitations for our CAB to current and former family caregivers of persons with ADRD as well as formal care providers. Our broader research objectives motivating this work are interventions focused on middle-aged and older caregivers; as such, we limited the age eligibility of ADRD caregiver CAB members to 50 years of age and older. All members received information about study activities and procedures and provided consent to become a CAB member. Compensation was provided to CAB members for their participation and they were reimbursed for transportation costs.

Fostering the CAB’s Role

Traditional researcher–community member power differentials were addressed during the initial meeting, when the objectives for the intervention adaptation were discussed. To encourage maximum engagement by CAB members, researchers emphasized the team-based nature of the work, stressed the role of community members as experts in cultural aspects of caregiving, and urged CAB members to see their expertise in Latino culture as of equal importance to the knowledge that researchers brought to the group. Questions and concerns were discussed, and the importance of learning about research as well as the CAB members’ vital role in adapting the intervention were reiterated. In addition, group cohesion was fostered by the availability of meals during the 2-hr meetings, as “breaking bread together” can help to build rapport.

The CAB worked closely with the research team, which was led by a Spanish-speaking investigator and Spanish-speaking staff, to guide the cultural adaptation of an existing intervention for dementia caregivers. Following the cultural adaptation work, the CAB codesigned with the research team an early-stage clinical trial to test the acceptability of the culturally adapted intervention. This entailed identifying key elements to trial success, including barriers to recruitment and retention and potential solutions to address these.

Community Advisory Board Training

To prepare the CAB to guide the cultural adaptation and clinical trial design, CAB members participated in a unique training program in Spanish led by the Latina lead researcher called Engaging Latinos in Cultural Adaptation Research (ELCAR). ELCAR was adapted from the Engaging Older Adult Learners (ENGOAL) program designed to increase the engagement of older African Americans in research (Seshadri et al., 2019).

An outline of the training curriculum is provided in Table 2. The training consisted of six weekly group sessions that provided education about research methods and ethics, cognitive health, and cultural adaptation. The first training session covered the introduction to the training program. CAB members also shared their expectations for the training which helped build group rapport and cohesion. The subsequent three training sessions focused on health research methods. The first methods session included discussions about definitions and nature of research and the existing ethical standards for research and subject protection measures. Two subsequent sessions covered the most common data collection methods in quantitative and qualitative research. Training sessions included skill-building exercises in which CAB members conducted, for example, literature search on a health-related topic of interest to them, analysis and interpretation of quantitative data from self-administered questionnaires, and qualitative interviews. Probing questions during these sessions further ensured the learning and practice of the skills learned. For example, CAB members were asked to describe how they could study a research topic of their choice using a quantitative or qualitative approach.

Table 2.

Community Advisory Board Training Curriculum Overview

Overview of sessions
Session 1	Program introduction
	• Program overview
	• CAB members’ training expectations
	• CAB members’ experiences in caregiving and providing community and health services to Latino caregivers and Latinos with ADRD
Session 2	Introduction to health research and ethics
	• Common types of research designs
	• Research subject protection
	• Practical skills training: Identify a health-related topic of interest and conduct a literature search about it.
Session 3	Data collection methods and analysis in quantitative research
	• Examples of quantitative research approaches and studies
	• Common statistical approaches to analyze quantitative data
	• Practical skills training: scoring and interpreting survey data
Session 4	Conducting and analyzing qualitative research
	• Examples of qualitative research approaches and studies
	• Common approaches to analyze qualitative data
	• Practical skills training: conducting an interview
Session 5	Normal cognitive aging, ADRD, and dementia caregiving
	• Age-related cognitive decline
	• What is dementia and what are the most common types of dementia
	• Risk factors associated with dementia
	• Caregiver physical and emotional well-being
Session 6	Introduction to cultural adaptation
	• Common frameworks to conduct cultural adaptation
	• Examples of cultural adaptation studies with Latinos
	• Approach for current adaptation study

Notes: ADRD = Alzheimer’s disease and related dementias; CAB = Community Advisory Board.

The fifth training session included education about age-related cognitive changes, ADRD and ADRD caregiving, and, particularly, discussed information specific to the Latino population. For example, we presented information about incidence and contextual factors of ADRD among Latinos, prevalence of Latino ADRD caregiving, and Latino caregiver health. The final session provided an introduction to cultural adaptation of evidence-based interventions including methods in cultural adaptation, examples of adaptation studies with Latinos, and an in-depth discussion of Barrera’s (2013) staged approach framework to cultural adaptation of evidence-based interventions that would guide our adaptation work for Latino caregivers. Thus, the training program aimed to facilitate CAB member’s role in informing all stages of the adaptation work. Training materials for the program are available upon request from the first author.

CAB Training Outcome Measures

Satisfaction questionnaire

The satisfaction questionnaire (Dillard et al., 2018) included seven statements reflecting satisfaction with the training program; it was completed using a 5-point Likert scale (5 [strongly agree] to 1 [strongly disagree]). The questionnaire also included three open-ended qualitative feedback questions to capture responses to aid training improvement. CAB members indicated (a) what they liked the most and (b) the least about the training, and (c) provided suggestions to improve the training program.

Alzheimer’s Disease Knowledge Scale

The Alzheimer’s Disease Knowledge Scale (ADKS; Carpenter et al., 2009) is a commonly used scale designed to measure AD knowledge consisting of 30 true/false questions measuring what people know about AD across seven critical domains: risk factors (6 items), symptoms (4 items), life impact (3 items), assessment and diagnosis (4 items), treatment and management (4 items), disease trajectory (4 items), and caregiving (5 items). The total scores can range from 0 to 30, where higher scores indicate better knowledge about AD. The ADKS has adequate psychometric properties and previous work shows support for its use with the general public, patients, and caregivers (Carpenter et al., 2009).

Participant Attitudes and Beliefs Toward Research

The Participant Attitudes and Beliefs Toward Research (PABRQ) is an instrument that measures respondents’ attitudes toward research and research participation (Dillard et al., 2018). We supplemented the scale with one multiple-choice item regarding motivation to participate in research and one item regarding the study of intervention programs.

Data collection timeline

The PABRQ and the ADKS were administered prior to beginning the training and 1 week after completion of the 6-week training. CAB members completed the satisfaction questionnaire 1 week after completing the training program.

Qualitative Data Collection

The collection of qualitative data was driven by the analytic purpose of this study, which was to develop and evaluate the training of Latino CAB members. Participants’ views of the training program were solicited using three open-ended qualitative feedback questions regarding what they liked the most and least about the training, and what suggestions they had to improve the training program. These were handwritten by participants on the survey forms.

Data Analysis

Descriptive statistics were generated for the questionnaires that included fixed-choice questions and were reported in percentages. Qualitative data from open-ended responses were segmented based on the questions asked and subjected to initial descriptive and line-by-line coding with applied thematic analysis (Guest et al., 2011) to identify factors associated with training program satisfaction and/or dissatisfaction. In this exploratory approach, we looked for key words, themes, or ideas that framed how participants viewed the training experience, focusing on how often particular words or phrases occurred and co-occurred, linguistic connectors, and similarities and differences. Codes were aggregated into themes independently by two coders, and were discussed in a consensus meeting. In the subsequent analysis, we eschewed an interpretive approach and focused primarily on face-value content, as participants’ comments were brief and to the point. Also, the participants’ responses were discussed with the larger research team to identify potential themes the two coders may have missed. Finally, the first author conducted member checking with CAB members during the first feedback session and members confirmed the validity of the themes.

Results

Satisfaction With Training Program

Responses to the satisfaction questionnaire were overall favorable. All CAB members (100%) reported enjoying participating in the training program and that they would continue to participate, and would also attend future programs offered by our group. CAB members strongly agreed (88.9%) or agreed (11.1%) that the quality of the training and its content was high. All CAB members (100%) reported that the training activities enhanced their knowledge about the topics discussed and provided them with useful information. Responses varied for the item asking whether the activities would influence how they take care of themselves: 44.4% strongly agreed, 44.4% agreed, and 11.1% were neutral.

In the open-ended questions from the satisfaction questionnaire, most CAB members expressed that the content of the training was interesting and very useful. They demonstrated enthusiasm for learning about research and ADRD. One member reflected that, “I learned a lot about how to deal with data and how to do it well.” Others noted that they liked “learning about Alzheimer’s disease and its symptoms” and “the topic of the disease since there are many people who suffer from it.” Among CAB members who expressed that they valued the program, one caregiver stated that “it is preparing us to help people with this [ADRD)] disease” while another stated that they liked “knowing how to contribute and help these patients [with ADRD].”

Many of the CAB members expressed appreciation for the active interaction of the group and its diverse composition. One participant stated: “I like that the group has people with different talents and trades. The group participates a lot and I like to hear their experiences.” Another CAB member noted that they specifically liked “the interaction with professionals and caregivers, since experience is gained and one learns from caregivers and professionals in the field.” An additional common reason for liking the program was the presentation and delivery of the training. One CAB member remarked on “the preparation, knowledge and presentation of the facilitator” while another observed that “[the facilitator] is doing an excellent job; [I] would change nothing” about the training.

In response to questions about what they liked the least about the program and what could be improved, lack of time for training was a salient theme. Most participants requested to extend the training by either including more hours or offering it for more days to enhance their learning experience. One CAB member expressed: “Very short time. These topics [research and ADRD] are extensive and require much more time. There is much to learn.” Another member suggested: “Maybe offer it on Saturdays for more hours.” A minor theme pertained to the location where the training was offered. One member felt it was too far from their home, while another (in response to earlier difficulties finding a permanent place to meet) suggested “having a fixed place where you can meet for class.”

Knowledge About Alzheimer’s Disease

We assessed knowledge about AD to understand whether the information provided within one training session would improve CAB members’ knowledge and understanding of AD (Figure 1). The overall mean score pre-training was 20.7 (4.1 standard deviation [SD]) out of 30 (69% correct). CAB members scored the highest in the domain of life impact (90% correct). The domain with the lowest score was caregiving (44% correct). The overall mean score post-training was 22.6 (3.5 SD; 75% correct). The domains with the most increases in scores following the training were caregiving (18% increase), risk factors (15% increase), and treatment and management (12.5% increase).

Figure 1.

Pre- and post-comparison of AD knowledge and participants attitudes toward research in CAB members. AD = Alzheimer’s disease; ADKS = Alzheimer’s Disease Knowledge Scale; PABRQ = Participant Attitudes and Beliefs Toward Research.

Attitudes and Beliefs Toward Research

Overall scores on the PABRQ indicated that CAB members had favorable attitudes toward research participation and purposes prior to the training. About 88.9% of members indicated positive and very positive attitudes before the training and attitudes remained relatively stable after the training with 100% indicating positive/very positive attitudes. Prior to the training, 33.3% of CAB members reported having quite a bit or a lot of knowledge about research participant protection measures, and following training completion, 66.6% indicated having a bit, quite a bit, or a lot. Only 22.2% reported being neutral about research protection measures both prior to training and after completion. CAB members demonstrated greater motivation to participate in research post-training, indicating that being part of a trial ensures they get better monitoring of their disease/condition and because they wish to help future patients by helping to test new drugs or treatments. As shown in Figure 1, there was a notable narrowing of range in scores post-training compared to baseline.

Discussion

Community engagement is an effective and sustainable approach to increase the representation of marginalized communities in research. Although CABs are an excellent strategy to support this effort, investigators need to be mindful of potential challenges to CAB engagement and continued involvement in research (Zhao et al., 2019). By providing a description and evaluation of our work, we hope to support other investigators’ efforts in conducting community-engaged research with Latinos, including Latino ADRD caregivers. Our work demonstrates how to address some of the most pressing challenges for establishing and maintaining CAB members’ successful engagement in ADRD caregiving research development. The training program complements our research approach which is guided by a cultural lens that contextualizes the caregiving experience for Latinos (Aranda & Knight; 1997) and Barrera’s (2013) adaptation framework that systematically leads the adaptation work, and thus we ensure that the CAB is adequately equipped to fulfill their role.

Evaluation of the Training Program

Our evaluation of satisfaction ratings suggested that the training program was well received by CAB members. Their enthusiasm for and continued involvement in research and health literacy training suggests that such training is a promising approach to increase the representation of marginalized individuals in community-engaged research. This is consistent with previous work where training community stakeholders in research increased interest in research engagement and peer advocacy (Dillard et al., 2018).

Because limited knowledge of ADRD is a common challenge among Latino ADRD caregivers (National Hispanic Council on Aging, 2018), we assessed dementia literacy among the CAB before and after training. Although the overall mean ADKS scores following the training did not increase significantly, there was baseline variation in ADRD knowledge among the CAB members. For 44% of members, baseline ADKS scores were below the sample mean score of 20. Similarly, we found variations in post-training scores, with 33% of members increasing their scores by 4–6 points. The most gains were achieved on questions pertaining to management of behavioral and psychological symptoms of dementia (BPSD). For many Latinos, BPSD are considered part of the normal aging process (Gelman, 2010), thus they may not be labeled as problematic until illness progression occurs. In addition, dementia literacy may interact with cultural values, including respeto (respect) which guides Latinos’ behaviors toward others based on age, gender, and authority (Arévalo-Flechas et al., 2014), potentially limiting caregivers’ willingness to label behaviors as challenging or to seek help to manage challenging behaviors.

CAB members also improved their knowledge about risk factors associated with AD and AD treatment and management. Although we acknowledge that the small sample of CAB members is a limitation to the generalizability of results, the increase in scores in these domains mirrors previous intervention work (Halladay et al., 2017) suggesting that improving ADRD literacy can increase preparedness for caregiving among Latinos.

Initial attitudes toward research engagement were relatively positive. This is inconsistent with some studies indicating a strong lack of trust toward research among marginalized groups, due to continued racial and ethnic discrimination and negative experiences in health care settings (Institute of Medicine, 2003) and consistent with others that indicated positive attitudes in marginalized older adults (De La Fuente et al., 2013; Dillard et al., 2018) surveyed. However, in De La Fuente et al.’s (2013) study, 18% of respondents also reported concerns about the safety of medical research participation. Openness to research participation may be dependent on more factors than ethnicity, including past experience with the medical system and the nature of the research (e.g., medical/nonmedical, invasive/noninvasive).

Although our CAB’s overall attitudes toward research remained relatively stable from prior to post-training, their understanding of human subject’s protection improved. Positive changes in attitudes toward research after the training were also evident, such as their increased willingness to participate in trials because of their wish to help individuals in the future. Indeed, altruistic reasons embedded in cultural and community priorities may facilitate willingness to participate in research, despite mistrust (George et al., 2014). Taken together, our evaluation suggests that the training had a positive effect on the CAB members’ ADRD- and research-related knowledge, and some effect on their general attitudes toward research.

Currently, the CAB is working closely with our investigator team conducting cultural adaptations of evidence-based interventions for Latino dementia caregivers. Guided by Barrera’s stage model of cultural adaptation (2013), they are involved in all stages of the adaption process, including suggesting changes to the interventions, approving the adapted intervention to be tested, informing study design and data collection, and integrating study feedback to shape refinement of interventions. Through their work, they consistently implement the skills they developed from the training program and have voiced that they feel adequately equipped to do their work. Importantly, they advocate for research participation in the community and collaborate with the recruitment of Latinos for ongoing studies.

Recommendations for Addressing Major Challenges in CABs

Unbalanced power relations

Successful collaborations to improve health equity in marginalized communities require CABs in which group members share power in the work (Halladay et al., 2017). To address potential power imbalances, our first CAB meeting focused on the need for all team members to have equitable opportunities to contribute and make decisions about priorities in the dementia caregiver program. Reminding members that it is important to hear their voices, as they are experts on Latino cultural nuances, can contribute to greater equity in discussions. Clarifying expectations from the beginning and demonstrating cultural humility reduces uncertainties about the collaboration and individual contributions to the proposed work (Halladay et al., 2017).

An additional element of equitable power relations in the CAB may be to draw on pre-existing partnerships and familiarity with the researcher. Lack of trust from the community of interest can further challenge power relations in a CAB (Israel et al., 2010), as well as overall group cohesion (Zhao et al., 2019). In our CAB, because the recruitment of members was based on an existing partnership with the community senior center, potential members either recognized the lead investigator from previous community outreach activities, or they were referred by highly regarded community leaders associated with community agencies. Relying on community leaders in the selection of members facilitates the functioning of CABs in their roles (Chumo et al., 2022). However, we acknowledge that solely relying on community partnerships to recruit for studies may limit participation to those who are affiliated with community organizations and, therefore, may exclude individuals with equally significant potential contributions who reside in the broader community but are not part of any organization. Nonetheless, the success of our strategy highlights the importance of establishing relationships with the community and its leadership, and building trust prior to beginning research studies as a means to successfully establish and maintain a CAB (Manda-Taylor, 2013).

Language barriers

Language is a common barrier in community-engaged approaches including CABs, and in research participation of marginalized communities in general. Our research team consists of a Spanish-speaking lead investigator and research staff. Moreover, the lead investigator is a Latina, which CAB members identified as a key contributing factor that motivated them to participate in the CAB. The representation of Latinos both in the research team and CAB is crucial for understanding and translating the impact of culture and language in adaptation work (Garcia et al., 2023). Additionally, CAB members have varying levels of literacy and although all members speak Spanish, there are differences in language by countries. Thus, during larger group discussions, everyone contributed their language background to ensure that communication is clear, understandable by all, and suitable for the adaptation work.

Acknowledgement of the value of time

Previous investigators have suggested that the volunteer nature of CABs creates a barrier to active and sustainable involvement (Mijumbi et al., 2023; Zhao et al., 2019). In the CAB work reported here, there were several incentives that enhanced the collaboration. First, CAB members were reimbursed for time and transportation costs. Second, CAB members were offered a group experience that was both educational and socially satisfying (as indicated by the satisfaction survey), thus enhancing group cohesion. Third, the availability of food fostered rapport. All of these strategies contributed to the feeling of professionalism in the group and that their time was valued and well spent.

Knowledge in the conduct of research and health literacy

Limited knowledge about research and low health literacy among CAB members is a continued and concerning challenge among CABs. Typically, CAB members are trained on study protocols and procedures; however, they receive little or no training in the conduct and ethics of health research (Zhao et al., 2019). Our training sought to fill general knowledge gaps of research and reduce potential stigma toward research by educating about research design, basic data collection and analysis, and subject protection methods in research. Given that language barriers are closely tied to limited research knowledge and health literacy (Singleton & Krause, 2009; Zhao et al., 2019), the language for the training was simplified to a fifth-grade education level. The didactic learning was reinforced by skill-building exercises which provided members the opportunity to engage in activities necessary for research development and conduct. CAB members were particularly eager to learn and discuss how dementia and its related health and caregiving outcomes manifested in the Latino population. Thus, we tailored ADRD-related education to our population of interest. In addition, the concept of culture was interwoven throughout the research training, ensuring the delivery was culturally congruent. The examples provided during the training sessions were culturally centered and relevant to further derive meaning from the material. Therefore, CAB members likely responded positively to the didactic aspects of the training program because cultural competence was embodied in the training content and delivery (Gallavan & Webster-Smith, 2012).

A novel addition to this training format was the education about cultural adaptation approaches to expand on common research methodologies. It was important that the CAB understood and agreed on the rationale for culturally adapting an intervention for Latino caregivers and also the collective contribution to the adaptation work. CAB members emphasized that they appreciated having a session to discuss this topic as it helped them understand the work they would be guiding. In addition, providing greater insight into research and cultural adaptation to members of the Latino community builds capacity for future research engagement and collaboration.

Finally, although there were some qualitative comments regarding lack of time and needing easier access to the venue, our thematic analysis of qualitative feedback suggested that the positive training experience appeared to be facilitated, in part, by the group interaction, appreciation for the diversity of perspectives among CAB members (Rabin et al., 2023), and opportunity to learn from the presenter and from the contributions of other members to the discussion.

Conclusions and Implications

Working with a trained and established CAB can inform rigorous research with underserved populations that is culturally sound and relevant. Trained CAB members are better equipped to fulfill their roles and successfully contribute to all aspects of research development and conduct.

Increasing the meaningful involvement of Latinos, a commonly marginalized community, in research development is crucial to successfully address gaps in ADRD caregiving research.

Formalized training in research conduct and ethics and health literacy is a potential long-term strategy to reduce challenges in establishing and sustaining CABs, optimize CAB impact, and develop trust in the partnership. The benefit of having a standard training program is that it can be tailored to the needs of the CAB while preserving the necessary elements that are important for CABs’ successful engagement and ultimately, community–academic partnership success.

Funding

This work was supported by grants from the National Institute on Aging (Research Centers Collaborative Network [U24AG05855]; P30AG064103; P30AG064200) and the National Center for Advancing Translational Sciences (CTSI UL1TR002001).

Conflict of Interest

None.

Data Availability

Deidentified data from this study will be made available (as allowable according to IRB standards) by emailing the corresponding author. This study was not pre-registered.

Author Contributions

Maria Quiñones-Cordero (Conceptualization [Lead], Data curation [Lead], Formal analysis [Lead], Funding acquisition [Equal], Investigation [Lead], Methodology [Lead], Project administration [Lead], Writing—original draft [Lead], Writing—review & editing [Equal]), Silvia Sörensen (Formal analysis [Supporting], Funding acquisition [Equal], Methodology [Supporting], Project administration [Supporting], Writing—original draft [Supporting], Writing—review & editing [Equal]), Kenneth Hepburn (Funding acquisition-Supporting, Methodology [Supporting], Project administration [Supporting], Writing—review & editing [Equal]), Jahaira Capellan (Writing—review & editing [Supporting]), and Kathi Heffner (Funding acquisition [Supporting], Methodology [Supporting], Project administration [Supporting], Writing—review & editing [Supporting])