Department of Psychosocial Oncology and Palliative Care, 1855Dana-Farber Cancer Institute, Boston, MA, USA.
Chinese American Coalition for Compassionate Care, Cupertino, CA, USA.
Am J Hosp Palliat Care. 2021 Jun;38(6):650-657. doi: 10.1177/1049909121989986. Epub 2021 Jan 27.
A paucity of literature describes the growing Chinese American community's end-of-life (EOL) priorities and preferences.
Develop a culturally-tailored advance care planning (ACP) tool to understand the EOL preferences of this underserved minority group.
Informed by the Cultural Appropriateness Theory, the Chinese American Coalition for Compassionate Care (CACCC) developed Heart to Heart (HTH) Cards using a 3-step approach. First, CACCC created and refined a list of bilingual, culturally relevant EOL issues. Next, CACCC organized the EOL issues into a card deck. Finally, CACCC developed a unique playstyle of the cards-the HTH Café. From 2014-2019, CACCC recruited Chinese American volunteers and participants for HTH Cafés. Following each Café, participants completed an anonymous survey describing their sociodemographics, top 3 cards, and café evaluation.
The 54 HTH Cards were organized into 4 suits (spiritual, physical, financial/legal, and social). Each card displayed a culturally-tailored EOL issue in English and Chinese. Playstyles included one-on-one and group formats (ie. HTH Café). CACCC volunteers conducted 316 HTH Cafés for 2,267 Chinese American adults. Most participants were female (61.6%), between 18-50 years old (56.7%), lived in California (80.2%) and born in Asia (74.3%). The top priority (25.5%) was "If I'm going to die anyway, I don't want to be kept alive by machines." Participants thought the session was pleasant (99.5%) and expressed intent to complete advance directives (86.5%).
HTH Cards represents the first, theory-driven, culturally-tailored ACP tool for Chinese Americans. More research is needed to establish its impact on ACP conversations and outcomes.
文献中很少描述不断壮大的美籍华人社区的临终(EOL)优先事项和偏好。
开发一种文化上量身定制的预先护理计划(ACP)工具,以了解这个服务不足的少数群体的 EOL 偏好。
受文化适宜性理论的启发,美籍华人慈悲关怀联盟(CACCC)使用三步法开发了心连心(HTH)卡。首先,CACCC 创建并完善了一份双语、文化相关的 EOL 问题清单。其次,CACCC 将 EOL 问题组织成一副牌。最后,CACCC 开发了一种独特的卡牌玩法——HTH 咖啡馆。2014 年至 2019 年,CACCC 招募了美籍华人志愿者和参与者参加 HTH 咖啡馆。每次咖啡馆活动结束后,参与者都会完成一份匿名调查,描述他们的社会人口统计学、前 3 名卡片和咖啡馆评价。
54 张 HTH 卡被组织成 4 个花色(精神、身体、财务/法律和社会)。每张卡片用英文和中文展示了一个文化上量身定制的 EOL 问题。玩法包括一对一和小组形式(即 HTH 咖啡馆)。CACCC 志愿者为 2267 名美籍华人成年人举办了 316 次 HTH 咖啡馆活动。大多数参与者是女性(61.6%),年龄在 18-50 岁之间(56.7%),居住在加利福尼亚州(80.2%),出生在亚洲(74.3%)。首要任务(25.5%)是“如果我反正要死,我不想被机器维持生命。”参与者认为会议愉快(99.5%),并表示有意完成预先指示(86.5%)。
HTH 卡是第一个基于理论、文化上量身定制的美籍华人 ACP 工具。需要更多的研究来确定它对 ACP 对话和结果的影响。