“At the End I Have a Say”: Engaging the Chinese Community in Advance Care Planning

• Published in: Journal of pain and symptom management 2023-11, Vol.66 (5), p.551-560.e1
• Main Authors: Nouri, Sarah, Li, Lingsheng, Huang, Carrie, Chung, Anni, Stokes, Sandy Chen, Pan, Shirley, Wong, Elizabeth C., Newman, Jeffrey, Woo, Joseph W., Cheng, Joyce, Tan, Charissa H., Wertz, Molly, Wood-Hughes, Elyse, Quinn, Mara, Pantilat, Steven Z., Lyles, Courtney R., Ritchie, Christine S., Sudore, Rebecca L.
• Format: Article
• Language: English
• Subjects: Advance Care Planning; Aged; Asian; Chinese/Asian American; community-based participatory research; East Asian People; Female; Focus Groups; health disparities; Humans; implementation science; Language; Male; United States
• ISSN: 0885-3924; 1873-6513
• DOI: 10.1016/j.jpainsymman.2023.07.017

Despite the association of advance care planning (ACP) with improved patient and caregiver outcomes, Chinese American elders have low rates of ACP. Assess ACP facilitators/barriers in the San Francisco (SF) Chinese community and codesign, implement, and test community-based ACP-promoting pilot events. A Chinese Community Committee (N = 19 community-based organization leaders, health system representatives, community members) conducted focus groups in Cantonese and English with Chinese older adults (age ≥55), caregivers, and community leaders. The Committee designed and implemented pilot events in-person and online. We analyzed focus group data using thematic analysis; assessed pre-to-post-event readiness to engage in ACP (validated survey; 14 scale, 4 = most ready); and assessed event acceptability. A total of 34 people participated in six focus groups. Themes described Chinese community-specific importance of ACP (e.g., reduces family burden), barriers (e.g., younger generations lack tools to discuss ACP with elders and vice versa), and facilitators (e.g., intergenerational events, culturally/linguistically appropriate materials). Based on focus groups findings, the Committee developed a novel ACP tool and designed intergenerational events. A total of 195 participants attended 10 events; 95% were Chinese, 90% spoke Chinese languages, 80% were women. ACP readiness increased significantly (1.66 [SD 0.84] vs. 2.03 [SD 0.85]; P < 0.001); 94% of participants were comfortable attending and 96% would recommend events. Community-developed intergenerational events that highlight the value of ACP and address barriers are acceptable and increase ACP engagement in the Chinese community.