Using a Community-Based Participatory Approach to Develop a Culturally Sensitive Intervention for Chinese American Family Caregivers

Background and Purpose: Providing care for a family member with Alzheimer’s disease and related dementias (ADRD) negatively affects caregivers’ physical and mental health. Despite numerous intervention studies conducted for ADRD family caregivers of Caucasian Americans, it is not clear which interventions can effectively reduce the stress of family caregivers of Asian Americans, a population with limited opportunities to engage in social behavioral intervention research. Focusing on the largest and fastest-growing ethnic group in Asian Americans, the primary objective of this presentation is to feature how our team of academic researchers and community partners worked together to apply a community-based participatory research (CBPR) approach to developing, implementing, and evaluating a culturally sensitive, volunteering-based intervention for Chinese American ADRD caregivers. Our experience and lessons will help development of future CBPR-based behavioral clinical trials to improve quality of life among Asian Americans.

Methods: Guided by CBPR, we have been using multiple strategies to establish and maintain academic–community partnerships in developing and testing a culturally sensitive intervention for dementia caregivers in the Chinese American community since 2018. These include formation of a community advisory board, community needs and strengths assessment, development of a culturally sensitive intervention program, evaluation of the intervention in local communities, and preparation for a large multisite clinical trial.

Results: Following the CBPR principles, we worked with our community partners to establish a community advisory board (CAB) that includes administrators, professionals, and caregivers from the community. Using a mixed method, we learned caregivers’ challenges, needs, and strengths from 30 qualitative interviews and a survey (N=165) with Chinese ADRD caregivers and a focus group with practitioners working with the community. Based on the qualitative and quantitative evidence, we worked with CAB to develop a peer mentoring program (PMP), which utilizes the human resources of former caregivers, who used to provide care to family members with ADRD, to support current caregivers in the same ethnic community. In the PMP, we hired and trained former caregivers (mentors) to provide one-on-one mentoring and informational and emotional support to current caregivers (mentees) via weekly phone call for three months. A pilot randomized controlled trial was conducted with 8 former caregivers and 38 current caregivers (19 in PMP, 19 in the control) in New York City. The pilot intervention results indicated that the intervention was highly feasible and promising to reduce loneliness and depressive symptoms of current caregivers and increase the sense of purpose among former caregivers. With the success of the partnership and pilot study, CAB members and researchers refined the intervention manual and are currently proposing a full multisite intervention study to further evaluate the effectiveness of the PMP intervention.

Conclusions and Implications: This presentation will highlight the role and contributions of multiple partners through the process of developing and testing a culturally sensitive intervention for family caregivers in the Asian American community. We will also discuss the challenges and lessons learned for sustaining the collaboration, including enhancing long-term commitment, effective communication, inspiration and creativity, mutual support, coping with conflicts, and cultural appreciation.