An Academic-Community Engagement: A Roadmap for Developing a Culturally Relevant Diabetes Self-Management Program among Vietnamese Americans

Approach

The academic team comprised three faculty members and a doctoral student from the University of Oklahoma Health Sciences Center College of Nursing and College of Pharmacy. Among these faculty members, two have been serving as members of the Asian Health Coalition for more than a decade and one of these is a Vietnamese woman who speaks Vietnamese fluently. In addition, one faculty member on the team has been conducting community-based participatory research in partnership with marginalized communities for more than a decade. To situate our positionality and power in this project, our team identified our own degrees of power through factors of race (one faculty member was Vietnamese; two faculty members were white; the doctoral student was African), class (all were upper middle), education attainment (all had earned doctoral degrees or were in the process of doing so), gender (all were female), and citizenship (one had immigrated to the United States as an adult). Taking a reflexive approach was central to our goal to create an environment in which authentic bidirectional learning could occur in sessions with VietAmerican community partners. Hereafter, “we” will refer to the academic team. We aimed to elicit input to help us shape a Vietnamese DSMES program and ensure that this intervention responded to the community’s needs. Recognizing the importance of inclusivity, we incorporated a process to extend engagement opportunities for community members with different areas of expertise, various cultural experiences, and community roles and responsibilities. The ultimate goal in partnering with the Vietnamese community of Oklahoma is to develop a culturally and situationally tailored intervention embedded in the cultural practices, community resources, and relevant supportive needs among VietAmericans living with T2D. This project was reviewed by the academic institution’s Institutional Review Board who determined that it did not constitute research.

Recruitment and Establishment of a Community Advisory Board

In order to assemble a comprehensive CAB who could contribute cultural knowledge, expertise, and lived experiences, the academic team initially collaborated with the president of the Vietnamese-American Community in Oklahoma City and the Metropolitan Areas and the Oklahoma Asian Health Coalition, who assisted in forming a 23-member CAB. Purposive approaches were used to identify participants as community representatives from each organization to participate. Eleven organizations were invited to co-influence program development. These organizations include the Asian District Cultural Association, Vietnamese-American Community in Oklahoma City and Metropolitan Areas Association, Asian Health Coalition, Vietnamese Catholic churches, Vietnamese Baptist churches, Vietnamese Buddhist temples, healthcare practice clinicians, and Vietnamese Immigration Services. One to four community representatives from each organization who either volunteered in their roles, worked in the target organizations, or have experiences in diabetes education and health literacy were invited to serve on the CAB. These representatives were then assigned to one of the four working groups based on the individual’s role or profession to create a forum for discussions with a clear focus on program effectiveness. Engaging all possible organizations and stakeholders as equal partners was essential to ensure that program adaptations were community-driven and sustainable.

Representation on the CAB included a wide range of stakeholders and health providers with a variety of interests and expertise, such as community leaders, healthcare professionals, faith-based community members, and VietAmericans with T2D and their care partners. The purposes of the CAB were to (1) identify community priorities, needs, and interests of a Vietnamese DSMES program; (2) provide input on a translated program to ensure content relevance; (3) review the diabetes education curriculum and offer feedback to address culture-specific needs; and (4) discuss and outline the pilot study proposal and the approach to outcome measurements. CAB members were encouraged to share their knowledge, expertise, and resources within the community. Interactions among members presented the opportunity to leverage network connections to implement the tailored program.

Application of the Community Engagement Continuum (CEC)

Community engagement can take many styles and can include partnerships with organized groups, agencies, institutions, or individuals. The CEC is a modified diagram drawn by the International Association for Public Participation and was conceptualized to ensure meaningful engagement and to promote community health (CDC, 2011). Unlike some community engagement efforts to achieve a time-limited project, moving along this CEC, our academic-community engagement could evolve into long-term partnership to address social, economic, cultural, and environmental factors. Utilizing the CEC as a conceptual framework, which ranges from community outreach activities to shared leadership, we applied various levels of engagement to improve communication and build trust with community partners to enhance collaboration efforts and to optimize the likelihood that the tailored DSMES program would have its intended effect (Table 1). This collaboration promoted equitable sharing of decision-making power and responsibilities among four workgroups: (1) Healthcare professionals (n = 6), (2) Community leaders (n = 7), (3) Faith-based community (n = 5), and (4) Patient representatives (n = 5), each with a different charge (Table 2).

Academic-Community Team Meetings

To ensure compliance with the COVID-19 pandemic restrictions and to accommodate the community representatives’ schedules, all meetings were held via Zoom in the evenings. Holding community meetings in the evening and via Zoom has been a sustainable approach to overcome participation barriers for busy and geographically dispersed representatives. Additionally, holding separate small workgroup meetings allowed ideas to be shared among those with similar backgrounds and in a less intimidating environment.

The academic team facilitated the meetings and remained neutral to the discussions. Ground rules were agreed upon at the first meeting to ensure a safe space to foster open communication and to ensure that every voice had equal value. The community meetings were recorded on Zoom with participants’ permission. Meeting notes were collected by the graduate student assistant. CAB meetings were conducted in both English and Vietnamese; participants were provided with a $75 gift card as reimbursement for their time.

A total of six meetings were held over six months. Each representative was met with three times – initial, individual workgroup, and final meeting. All representatives attended the first meeting and the final meeting. The first meeting focused on orienting the CAB members to the study by sharing our previous research findings (Nguyen & Edwards, 2014) and lessons learned regarding health beliefs and diabetes self-management practices among Vietnamese adults (Nguyen & Jones, 2021). Sharing the findings allowed CAB members to have adequate information about the project to permit judgement on the need for community support and participation. Then, we introduced the goal of adapting the Association of Diabetes Care and Education Specialist (ADCES) DSMES content and eliciting essential feedback to achieve cultural and linguistic relevance. Group discussions during the first meeting included identifying barriers to self-management and identifying community resources that could be leveraged to promote healthy behaviors. The second through fifth meetings were held with each specific workgroup separately to gain relevant context-specific knowledge. During this meeting, the discussion topic included identifying and prioritizing culturally appropriate intervention approaches for a DSMES program development. Each specified workgroup reviewed the DSMES content focusing on the ADCES seven self-care behaviors–healthy eating; being active; taking medications; monitoring; problem solving; healthy coping; reducing risk–and integrating content to include Vietnamese cultural health practices. The workgroups discussed the most effective instructional format and delivery modes to reach various age groups and economic statuses within the Vietnamese community. At the final meeting, with all CAB members reconvened, we shared members’ ideas and feedback obtained from individual group meetings, and sought further clarification on the tailored program. The feedback received from CAB members guided the final revision of the DSMES content and program delivery.

To engage the community members in all phases of program development and incorporate their feedback, the academic team also sought input on developing the infrastructure to deliver the intervention and discuss a plan for a pilot test to evaluate the acceptability and feasibility of the program. Ongoing community involvement for the collaboration project can benefit from quality improvement and evaluation efforts (Williamson et al., 2016). Additionally, engaging stakeholders enhances study design, processes and outcomes selection, and helps keep the focus on patient-centeredness (Forsythe et al., 2018). A comprehensive strategy was developed to engage the Vietnamese community in all aspects of the program tailoring process, from proposal development through program delivery.

Community Input on the Culturally Relevant DSMES Program

The academic team introduced the ADCES diabetes education curriculum to CAB members and asked for their input on tailoring the content to best address the Vietnamese cultural needs. The discussion topics for each working group were similar; therefore, community input was clustered by themes. The common themes included healthy eating, taking medication, and monitoring. These themes were from the ADCES seven self-care behaviors that CAB members thought were most relevant (ADCES, 2021). Through this interaction, it is clear that health beliefs and cultural practices are closely connected for this VietAmerican community.

Vietnamese food consumption and utilization of complementary and alternative herbal products were identified as high priorities across all workgroup meeting discussions. The CAB members verbalized concerns about the cultural misperception of carbohydrate intake and the inability to read food labels and to measure food portions. One CAB member from the faith-based community workgroup stated, “My mother eats rice three meals a day for 65 years; I am not going to tell her to cut that out. If she doesn’t eat rice, she will eat vermicelli or some other type of noodles.” One patient representative member shared, “I am an engineer and I can read, but reading food labels is difficult for me. I can imagine that would be nearly impossible for people who don’t read English.” Another member from the patient representative workgroup stated, “They tell me to eat so many grams of carbohydrates at each meal; the problem is I don’t know how much a gram is, we do not measure our food in grams, we use bowls to measure food.” To mitigate high intake of carbohydrates, the CAB recommended using Vietnamese food models, replicas, and Vietnamese utensils to teach people about healthy eating and emphasized education on food labels, carbohydrate consumption, and Vietnamese food preparation (i.e., portion sizes). CAB members also advised that the program should provide relevant education about commonly used herbal products and food commonly used as herbs.

The use of complementary and alternative products to manage diabetes was raised during every meeting. According to a member from the community leader workgroup, “These products have fewer side effects than the Western medicine, and they are good to control hyperglycemic symptoms.” The CAB members realized that many VietAmericans utilized herbal products and suggested that the adapted DSMES program acknowledge and respect the use of traditional herbs, while educating individuals about the appropriate use of Western medicine. It was recommended that education program revisions incorporate these herbal products. The CAB members emphasized that the community needs to have a clear understanding about medication safety and interactions with Western medicines, while they recommended only minor modifications for cultural relevancy on being active, healthy coping, and reducing risks.

A member from the healthcare professional workgroup pointed out that nutrition is often the main focus of self-management among Vietnamese adults with diabetes, and there is relatively little focus on prescribed medication, blood glucose monitoring, risk reduction behaviors, or personal strategies for health promotion, which is consistent with our previous research findings (Nguyen, 2014; Nguyen & Edwards, 2014). CAB members also suggested that the community would benefit from emphasizing the importance of and reason for regularly self-monitoring blood glucose levels, a clear explanation of differences between blood sugars and HbA1c levels, and incorporating family members in this education.

Factors such as health literacy and cultural beliefs influence diabetes self-management and can sometimes be barriers to health behavior change. To overcome these barriers and facilitate health behavior change, we plan to incorporate relevant Eastern health practices to best address socio-cultural needs based on the community members’ input on the program development. Additionally, our program will embed the health belief model to enhance self-efficacy and reinforce healthy behaviors (Rosenstock et al., 1988). Because an individual’s health behavior is impacted by his or her perception within four areas—severity of condition, susceptibility to problems, barriers to action, and self-efficacy—our intervention will also aim to address these areas.

Community Input on Linguistically Relevant DSMES Program

The CAB members recognized that differences in language are likely a significant issue in the adoption and delivery of effective DSMES for the Vietnamese population. While there are many DSMES materials available, few materials have been translated into the Vietnamese language. Those materials that have been translated are often a direct translation of the information with inadequate attention to differences in cultural needs, such as differences in health beliefs and food consumption. CAB members acknowledged that the terms used in these translated materials frequently reflect a straight dictionary translation and recommended that the terms need to be customary speaking words to ensure easy and accurate comprehension.

A native Vietnamese independent contractor was hired to translate education materials to the Vietnamese language. A member of the academic team (A.N.) revised content to target towards lower literacy levels, aimed at improving glycemic control and overall health status for this community. Because the translation and revision of education content took longer than the timeline of this project, there was no opportunity for CAB members to review the translated materials and provide input. However, we anticipate pilot testing the materials with users prior to implementation and program delivery. In Spanish-speaking populations, diabetes education offered in the Spanish language improved physical activity and diabetes control (Smith-Miller et al., 2016; Wheeler et al., 2012). At the time of this writing, ADCES resources for people with diabetes are available in Spanish, Chinese, French, and Tagalog. Furthermore, the CAB suggested the use of technology apps, which were preferred over written resources, to deliver education and communication. Our academic team felt it was essential to translate the DSMES curriculum and resources into the Vietnamese language for linguistic relevancy and then revise the content to ensure appropriateness. We also felt that leveraging technology to provide education and support is necessary to overcome the barrier of transportation.

Community Input on Program Implementation and Future Study Design

Community advisory members were empowered to share their knowledge and insights to shape program delivery and future study design. The Vietnamese free clinic and the primary care clinics where most Vietnamese patients seek health services were suggested as primary settings for program implementation to optimize adoption. The CAB members also suggested strategies to include adding the DSMES program to the existing Vietnamese clinics and holding education sessions at the Asian Health and Wellness events for in-person education. Moreover, CAB members recognized that transportation is a barrier and suggested that the education program be delivered via a secured YouTube channel or Vietnamese radio station to accommodate those individuals.

Incorporating community input on the intervention program development was essential to ensure that the representatives not only provided initial feedback, but also verified that community recommendations and interpretations resonated. Starting with the proposal development, the members’ input was instrumental in designing the program outcome measures to be meaningful and socio-culturally relevant. In addition to eliciting outcome measures, we asked for input on the type of study, sampling, and recruitment strategies, as we aimed to encourage empowerment and to enhance study decisions. Although CAB members did not share their opinions on type of study or sampling, they suggested using the Vietnamese radio station and social media as a recruitment strategy and educational platform. The CAB also mentioned that including the caregiver partners was essential to foster support and promote optimal self-management behaviors, particularly among patients with limited English proficiency or those who relied on others for transportation.