Resilience in East Asian Immigrants for Advance Care Planning Discussions

University of Illinois

Status

Enrolling

Conditions

Advance Care Planning

Neoplasms

Treatments

Behavioral: Semi-structured interviews

Behavioral: Culturally Tailored Digital Resilience-Building

Study type

Observational

Funder types

Other

Identifiers

NCT06035549

KC_Awd_114452 (Other Identifier)

2023-0560

Details and patient eligibility

About

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.

Full 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).

Enrollment

84 estimated patients

Sex

All

Ages

18 to 80 years old

Volunteers

No Healthy Volunteers

Inclusion and exclusion criteria

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