Advance Care Planning
Conditions
Brief summary
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.
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.
Interventions
OTHERReligious leaders
Religious leaders who have experience providing pastoral or spiritual care to Chinese Americans living in Chicago
OTHERChinese Americans
Chinese Americans living in Chicago.
OTHERChinese Americans with end-of-life care discussions
Chinese Americans who have experience discussing end-of-life care decisions with others.
OTHERChinese Americans with chronic diseases
Chinese Americans who are diagnosed with cancer, hypertension, or heart disease and their family caregivers
Sponsors
University of Illinois at Chicago
University of Chicago
Rush University Medical Center
National Institute on Minority Health and Health Disparities (NIMHD)
Study design
Observational model
CASE_ONLY
Time perspective
CROSS_SECTIONAL
Eligibility
Sex/Gender
ALL
Age
18 Years to 90 Years
Healthy volunteers
Yes
Inclusion criteria
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.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Readiness, Support and Resources for ACP Discussions | Immediately at the end of the study | The Advance Care Planning Engagement Survey was used to evaluate the readiness for advance care planning discussions among Chinese Americans living in Chicago. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Support Needed for ACP Discussions | Immediately at the end of the study | 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. |
| Strategies Used for ACP and Death-related Discussions | Immediately at the end of the study | An in-depth understanding of barriers and strategies used to assist Chinese Americans/immigrants in ACP and death-related discussions. |
| Acceptability of an ACP pamphlet | Immediately at the end of the study | An in-depth understanding of Chinese Americans' views and acceptability on an ACP pamphlet. |
Countries
United States
Outcome results
None listed