Advance Care Planning, Neoplasms
Conditions
Brief summary
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.
Detailed 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).
Interventions
BEHAVIORALCulturally Tailored Digital Resilience-Building
The Culturally Tailored Digital Resilience-Building materials include an introduction to advance care planning and resilience skills that specifically address cultural beliefs and barriers.
BEHAVIORALSemi-structured interviews
Semi-structured interviews with religious leaders who provide spiritual care to Asian Americans/immigrants.
Sponsors
University of Illinois at Chicago
Rockefeller University
Study design
Observational model
CASE_ONLY
Time perspective
CROSS_SECTIONAL
Eligibility
Sex/Gender
ALL
Age
18 Years to 80 Years
Healthy volunteers
No
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.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Usability | Immediately at the end of the think-aloud interview | Use the System Usability Scale (range: 0-100) to assess the usability of the intervention. Higher scores indicate greater perceived usability by users. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Acceptability | Immediately at the end of the think-aloud interview | Use the Acceptability E-scale to assess the acceptability of the intervention. Scale total scores range from 6 to 30, and higher scores indicate greater acceptance for the proposed intervention. |
Countries
United States
Contacts
PRINCIPAL_INVESTIGATORLi-Ting H. Longcoy
University of Illinois Chicago College of Nursing
Outcome results
None listed