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.

Study Overview

• Status: Completed
• Conditions: Advance Care Planning
• Intervention / Treatment: Other: Religious leaders; Other: Chinese Americans; Other: Chinese Americans with end-of-life care discussions; Other: Chinese Americans with chronic diseases

Detailed Description

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.

• Study Type: Observational
• Enrollment (Actual): 125
• Phase: Not Applicable

Contacts and Locations

Study Locations

• United States
  • Illinois
    • Chicago, Illinois, United States, 60607
      • University of Illinois Chicago

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Adult; Older Adult
• Accepts Healthy Volunteers: Yes

• Sampling Method: Non-Probability Sample

Study Population

People who have experience providing spiritual/pastoral care to Chinese Americans in Chicago as a chaplain, pastor, or monk at a health care setting or religious organization in Chicago, or who self-identify as first- or second-generation Chinese Americans living in Chicago with/without having end-of-life care discussions with others. Chinese Americans living with cancer, hypertension, or heart disease, and their family members

Description

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.

Study Plan

How is the study designed?

Number of groups / cohorts

4

Cohorts and Interventions

Group / Cohort	Intervention / Treatment
Religious Leaders; Religious leaders providing spiritual care to Chinese Americans	Other: Religious leaders; Religious leaders who have experience providing pastoral or spiritual care to Chinese Americans living in Chicago
Chinese Americans living in Chicago	Other: Chinese Americans; Chinese Americans living in Chicago.
Chinese Americans for end-of-life care discussions; Chinese Americans with experience in end-of-life care discussions	Other: Chinese Americans with end-of-life care discussions; Chinese Americans who have experience discussing end-of-life care decisions with others.
Chinese Americans with chronic disease and their family members; Chinese Americans diagnosed with cancer, hypertension, or heart disease and their family members	Other: Chinese Americans with chronic diseases; Chinese Americans who are diagnosed with cancer, hypertension, or heart disease and their family caregivers

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Readiness, Support and Resources for ACP Discussions	The Advance Care Planning Engagement Survey was used to evaluate the readiness for advance care planning discussions among Chinese Americans living in Chicago.	Immediately at the end of the study

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Support Needed for ACP Discussions	An in-depth understanding of the support and resources needed to engage in ACP discussions with their family among Chinese Americans who have experience discussing end-of-life care with others.	Immediately at the end of the study
Strategies Used for ACP and Death-related Discussions	An in-depth understanding of barriers and strategies used to assist Chinese Americans/immigrants in ACP and death-related discussions.	Immediately at the end of the study
Acceptability of an ACP pamphlet	An in-depth understanding of Chinese Americans' views and acceptability on an ACP pamphlet.	Immediately at the end of the study

Collaborators and Investigators

• Sponsor: University of Illinois at Chicago
• Collaborators: University of Chicago; National Institute on Minority Health and Health Disparities (NIMHD); Rush University Medical Center

Study record dates

Study Major Dates

• Study Start (Actual): November 8, 2023
• Primary Completion (Actual): December 18, 2025
• Study Completion (Actual): December 18, 2025

Study Registration Dates

• First Submitted: January 30, 2024
• First Submitted That Met QC Criteria: January 30, 2024
• First Posted (Actual): February 7, 2024

Study Record Updates

• Last Update Posted (Actual): January 29, 2026
• Last Update Submitted That Met QC Criteria: January 27, 2026
• Last Verified: December 1, 2025

More Information

Terms related to this study

• Additional Relevant MeSH Terms: Cardiovascular Diseases; Heart Diseases
• Other Study ID Numbers: 2023-0354; P50MD017349 (U.S. NIH Grant/Contract)

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No
• product manufactured in and exported from the U.S.: No