Resilience in East Asian Immigrants for Advance Care Planning Discussions

University of Illinois at Chicago84 enrolled

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.

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).

Study Type

OBSERVATIONAL

Enrollment

Conditions

Neoplasms Advance Care Planning

Interventions

Culturally Tailored Digital Resilience-BuildingBEHAVIORAL

The Culturally Tailored Digital Resilience-Building materials include an introduction to advance care planning and resilience skills that specifically address cultural beliefs and barriers.

Semi-structured interviewsBEHAVIORAL

Semi-structured interviews with religious leaders who provide spiritual care to Asian Americans/immigrants.

Eligibility

Sex: ALLMin age: 18 YearsMax age: 80 Years

Medical Language ↔ Plain English

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

Locations (1)

University of Illinois Chicago

Chicago, Illinois, United States

RECRUITING

Outcomes

Primary Outcomes

Usability

Use the System Usability Scale (range: 0-100) to assess the usability of the intervention. Higher scores indicate greater perceived usability by users.

Time frame: Immediately at the end of the think-aloud interview

Secondary Outcomes

Acceptability

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.

Time frame: Immediately at the end of the think-aloud interview

Central Contacts

Li-Ting H. Longcoy

CONTACT

312-996-3024 liting@uic.edu

Data from ClinicalTrials.gov

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