The study was conducted from September 2021 to April 2022 with the goal of developing a culturally tailored WeChat-based intervention to improve the psychosocial well-being of Chinese American family caregivers of persons with dementia. The development of the WECARE program consisted of 3 steps. First, with experts’ input, we designed the structure and curriculum of the WECARE program based on existing evidence-based behavioral interventions for persons with dementia. Second, using a community-engaged user-centered design, we developed the multimedia components of the WECARE program that used the built-in functions of the WeChat app; we also developed a back-end database to manage intervention delivery and track user engagement. Finally, the complete WECARE program was refined after a beta test in target users.

The study protocol was approved by the Institutional Review Board of the George Mason University (IRB1849712). Informed consent was obtained from all participants prior to data collection. Given that this study was focused on protocol development, we did not collect participants’ personal information including their demographic data.

We first conducted interviews with 4 experts in the fields of ADRD, caregiving, cultural adaption, and mHealth intervention development, with 1 expert from each field. We sought input from the experts on (1) how to apply existing theories and evidence to enhance caregiving skills and reduce psychosocial stress among underserved family caregivers, (2) how to adapt evidence-based caregiving interventions for Chinese American caregivers, and (3) how to identify and prepare for potential barriers and facilitators during the intervention delivery.

The experts also suggested that the curriculum design be based on evidence-based interventions proven to be effective in minority and underserved caregivers of persons with dementia. Specifically, we used the Resources for Enhancing Alzheimer’s Caregiver Health II for its major domains of the intervention [34], Building Better Care for its short courses and training materials [35], and the DVD program of Gallagher-Thompson and colleagues [27] for culturally relevant problems and solutions for Chinese American caregivers of persons with dementia [27].

Following the principles of community-engaged user-centered design [36] while developing the program components, we worked closely with 8 stakeholders, including Chinese American family caregivers of persons with dementia (n=3), health care providers (n=3), and community leaders (n=2). Weekly meetings were organized to seek immediate input from stakeholders in terms of cultural appropriateness, ease of use, user engagement, and error reduction. The program components underwent the iterative process of being developed, reviewed, revised, tested, and refined. We also hired a software engineer to develop a back-end database to manage the WECARE delivery and user profiles. The database reflects the required functions identified in Step 1, including prescheduled automatic intervention delivery, user profile management, and user engagement tracking.

When the complete WECARE program was ready, we tested it among 5 target users. Of these 5 Chinese American family caregiver participants—1 man and 4 women—all had limited English proficiency and were recruited by our community partner. Participants were invited to a conference room and received the WECARE program on their WeChat accounts to test its navigation and the functions of the back-end database. During the test, participants were encouraged to “think out loud” and share their feedback while going through the program components. Participants were asked to check if all program components were delivered at prescheduled times and if all program components could be opened without problem. Meanwhile, research staff monitored all user activities on WECARE’s back-end database. All interviews were conducted in Chinese or Mandarin and audio recorded, and detailed notes were taken while observing users’ navigation behaviors. The research team discussed users’ feedback, addressed the glitches reported in the test, and further refined the program.

WECARE is a 7-week program with each week focused on a theme and the final week for summary and additional resources. These themes include (1) facts of ADRD and caregiving; (2) enhancement of caregiving skills; (3) effective communication with providers, care partners, and family members; (4) problem-solving skills for caregiving stress management; (5) stress reduction and depression prevention; (6) practice of self-care and health behaviors; and (7) social support and available resources. The 7 major themes were derived from the evidence-based programs (see Step 2). The curriculum schedule is detailed in Multimedia Appendix 1. The sample screenshots of WECARE are illustrated in Figure 1. By subscribing to the official WECARE account on their own WeChat accounts, participants could receive interactive multimedia programs on their smartphone or tablet once a day, 6 times a week, for 7 weeks. Participants who did not open the program components within a week would be reminded to do.

The content of the WECARE program was adapted for Chinese American culture based on input from our stakeholders, and the following changes were made. First, we ensured that the language translation reflected Chinese values and tradition. For example, following the tradition of respecting seniority, Chinese participants did not like the literal translation of “care recipient” or “care partner”; instead, they preferred to use “the elder” (“Lao Ren” in Chinese) to refer to the care partner, which we adopted in the WECARE program. Second, program components specific for our target users were added. For example, given that many Chinese caregivers have limited English proficiency, we added a section on how to communicate with health care providers with a practical checklist as well as a list of terminologies commonly used in medical encounters and dementia care. Additionally, as many Chinese caregivers have limited knowledge and use of formal care and support services [22], we added a section on local resources specific to the participant’s location, including health insurance, dementia care support, transportation assistance for medical care, and translation services. Third, we modified components to meet users’ demand and characteristics. For example, many stakeholders demanded “useful skill-building” content; we included videos demonstrating caregiving skills such as how to transfer, bath, feed, and clean the care partner. We also included many real-life cases to illustrate how to deal with difficult situations such as when a care partner has problematic behaviors in the public. Fourth, we adapted components to reflect cultural practice. For example, many Chinese caregivers live in multigenerational households and value “filial piety”; thus, we modified the component on how to communicate between family members, including communication on how to share responsibilities and how to discuss sensitive topics such as death. Additionally, as stress and depression are not commonly discussed in Chinese culture, we included a section to explain the importance of stress reduction and depression prevention from the perspective of family and love, citing real-life stories and demonstrating practical stress-reduction techniques.

The WECARE program consists of multimedia components to engage users and enhance understanding. Considering that many caregivers are older adults and many have lower levels of health literacy, each article is accompanied by an audio recording, so participants with vision impairment can listen to audio recordings for most of the WECARE content. We also included many short videos (3-5 minutes) adapted from other caregiver interventions with subtitles for illustration. Culturally relevant characters, storylines, and background music are embedded in all program components.

As WECARE is delivered via the popular WeChat social media app, the built-in functions of social networking in WeChat were used to enhance social support among participants. For example, participants were invited to attend staff-moderated group meetings scheduled at week 3, week 5, and week 7 and welcome to share their personal experiences during the course of WECARE. Participants could also initiate their own “group chat”; in a group chat, they could “friend” any fellow caregiver participant for a private chat. Prior to the group meetings, participants agreed to the protocol that all participants in the group meetings address each other by first names only and that no personal information discussed in the meetings be shared with other people outside the group.

Along with developing the front-end program components of WECARE, we also created an interactive web-based application to serve as the back-end database to manage intervention delivery and monitor user engagement. This interactive website has 3 core functions: (1) storing information on every participant enrolled, including characteristic and user preferences; (2) pushing the program components based on user preferences and response (eg, if a participant does not open the WECARE program component within a week, a reminder message will be sent); and (3) tracking program receipt and responses. User engagement indicators tracked in the database include whether a program component is opened, how many times the program is opened or played, and how much time is spent on each component. Figure 2 illustrates the scheduled delivery system through which the components of the WECARE program can be sent to users at prescheduled time. Figure 3 illustrates the user management system that stores user information and tracks user activities.

This study reports the process of developing WECARE, a culturally tailored social media–based intervention to enhance caregiving skills and reduce psychosocial distress in Chinese American caregivers of persons with dementia, and its key features. Community-based user-centered design principles were applied in the intervention development. We first crafted the structure of the WECARE curriculum based on existing evidence-based interventions and input from experts. Second, working closely with key stakeholders and through an iterative design-discuss-revise process, we developed culturally tailored multimedia program components at the frontend and an interactive database for intervention delivery and user profile management at the backend. Finally, we conducted a beta test of the complete WECARE program in target users and further refined it. The resulting WECARE is a 7-week mHealth program. Through subscribing to the official WECARE account, users could receive 6 multimedia articles pushed to their WeChat account each week for 7 weeks. Users could also use the built-in functions of WeChat for social networking. The back-end database automatically pushes program components with a preset schedule and tracks user activities on WECARE.

First, the beta test of the WECARE program was based on a small sample of 5 target users. The development was a rigorous process following community-engaged user-centered design principles [36] with input from experts and iterative discussion with key stakeholder. Further, according to Nielsen [42], 5 users are sufficient to elaborate usability. Second, the back-end database was designed specifically for WECARE delivery and requires a software engineer. We are seeking open-sourced solutions to lower costs and increase the potential of WECARE’s adoption and scale-up. Third, the biggest limitation of the study is that we do not have data on the feasibility and effectiveness of WECARE as a complete program as well as user feedback on its innovative features and functions. A pilot study is ongoing, and the results will be available once the trial is complete.

In conclusion, this paper reports the development process and key features of the WECARE program—a culturally tailored, linguistically appropriate, and interactive social media–based interventions to improve caregiving skills and reduce psychosocial distress among Chinese American caregivers of persons with dementia. As the US population becomes older and more diverse, an urgent need exists for more culturally sensitive mHealth interventions for minority and immigrant caregivers of persons with dementia. We advocate for more research and practice of the cultural adaptation of evidence-based program for digital delivery, capitalizing on the widespread use of smartphones and highly popular social media apps, to meet the needs of racial/ethnic minority and immigrant patients with dementia and their caregivers.