Overview
The purpose of the study is to develop a culturally tailored digital resilience-building intervention to help East Asian immigrants engage in advance care planning discussions with their family caregivers.
Description
Advance care planning (ACP) is a process to facilitate decision-making for future care and document values and preferences. However, the advance directive completion rates in East Asian Americans are low, which may extend to disparities in end-of-life care, including rates of hospice use and prevalence of unwanted aggressive treatments. To address this, this study uses information technology to develop a culturally tailored digital resilience-building intervention with and for East Asian immigrants to help them engage in ACP discussions. There are two aims of this study: (1) Conduct semi-structured interviews with a total of 30 religious leaders to identify the barriers and facilitators associated with discussing ACP and death-related topics with immigrants from China/Taiwan, Japan, and Korea and (2) Develop a culturally tailored digital resilience-building intervention using think-aloud interviews with 27 pairs of East Asian immigrants with cancer and their family caregivers (9 pairs each for immigrants from China/Taiwan, Japan, and Korea).
Eligibility
Inclusion Criteria for Religious Leaders:
- Age ≥ 18 years
- Serving as a chaplain or religious leader at a healthcare setting or religious organization
- Having experience providing pastoral or spiritual care to Chinese, Japanese, and Korean Americans in the US
- Being able to read and respond to questions in English, Mandarin, Cantonese, Japanese, or Korean.
Exclusion criteria: Not willing to provide consent.
Inclusion Criteria for Patients:
- Age ≥ 18 years
- Having a cancer diagnosis
- Likely self-identifying as a Chinese, Japanese, or Korean American/immigrant
- Being able to read and respond to questions in either English, Mandarin, Japanese, Korean, or Chinese dialects, such as Cantonese, Shanghai, Taishanese, or Taiwanese.
Exclusion Criteria for Patients:
- Having cognitive impairment per the Short Portable Mental Status Questionnaire with more than three errors
Inclusion Criteria for Family Caregivers:
- Age ≥ 18 years
- Being able to read and respond to questions in either English, Mandarin, Japanese, Korean, or Chinese dialects, such as Cantonese, Shanghai, Taishanese, or Taiwanese
- Having a family member who is likely to self-identify as a Chinese, Japanese, or Korean American/immigrant and has been diagnosed with cancer
