Building Resilience for Advance Care Planning (ACP) in Chinese Americans

Development of a Culturally Tailored Resilience-Building Intervention to Facilitate Advance Care Planning Discussions Between Chinese American Patients and Their Family Caregivers

The goal of this observational study is to learn about how Chinese Americans engage in advance care planning (ACP) discussions with their family caregivers.

The main questions it aims to answer are:

1. How do religious leaders discuss advance care planning and death-related topics with Chinese Americans who are diagnosed with cancer or heart disease in Chicago?
2. Are Chinese Americans living in Chicago ready to participate in ACP discussions with their family?
3. What kind of support and resources are required to engage in end-of-life care discussions among Chinese Americans/immigrants living in Chicago?
4. What do Chinese Americans with cancer, high blood pressure, or heart disease and their family members think about an ACP pamphlet made for Chinese Americans?

Participants will share their experience either through interviews or a survey.

The overall objective of this pilot study is to develop a culturally tailored resilience-building intervention for Chinese Americans with cancer or heart disease in Chicago. A qualitative analysis of semi-structured interviews will be conducted to identify how religious leaders addressed death-related topics with Chinese Americans with cancer, heart disease, or hypertension in Chicago. In addition, a mixed-method study using surveys and focus groups to understand the readiness, support, and resources of Chinese Americans living in Chicago to participate in ACP discussions with their family. Finally, a usability study will ask Chinese Americans with cancer, high blood pressure, or heart disease, and their family members, to share feedback on an ACP pamphlet designed for Chinese Americans.

Group 1

Inclusion criteria for religious leaders:

• Age ≥ 18 years of age;
• Having served as a chaplain, pastor, or monk at a health care setting or religious organization in Chicago;
• Being able to read and respond to questions in English or Mandarin;
• Having experience in having end-of-life discussions with Chinese Americans in Chicago.

Exclusion criteria: Unwilling to provide consent.

Group 2

Inclusion criteria for Chinese Americans living in Chicago:

• Age ≥ 18 years of age;
• Identifying themselves as first- or second-generation Chinese Americans;
• Being able to read and respond to questions in Mandarin or English.

Exclusion criteria: Unwilling to provide consent.

Group 3

Inclusion criteria for Chinese Americans with experience in end-of-life care discussions:

• Age ≥ 18 years of age;
• Identifying themselves as first- or second-generation Chinese Americans;
• Having experience discussing end-of-life care decisions with others;
• Being able to read, write, and respond to questions in either English or Mandarin.

Exclusion criteria: Unwilling to provide consent.

Group 4

Inclusion criteria for Chinese Americans with cancer, hypertension, or heart disease:

• Age ≥ 18 years of age;
• Self-identify themselves as first- or second-generation Chinese Americans/immigrants;
• Having a diagnosis of chronic diseases, such as cancer, hypertension, or heart disease;
• Being able to read and respond to questions in Mandarin;
• Being of the non-Hispanic Asian race/ethnicity.

Exclusion criteria:

• Having cognitive impairment per a Short Portable Mental Status Questionnaire with more than 3 errors, or
• Being born in the US.

Inclusion criteria for their family members:

• Age ≥ 18 years of age;
• Being able to read and respond to questions in Mandarin;
• Having a family member who is self-identified as a first or second-generation Chinese American/immigrant and has been diagnosed with chronic diseases, such as cancer, hypertension, or heart disease.

Exclusion criteria: Unwilling to provide consent.