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 Patients:
- Age ≥ 18 years
- Having a cancer diagnosis documented in the electronic medical record
- Being able to read and respond to questions in English, Mandarin, Cantonese, Japanese, or Korean
- Having a family caregiver who is willing to participate in the study
- Have adequate electronic health literacy with a score of > 30 on the electronic-Health Literacy Scale.
Exclusion Criteria for Patients:
- Having cognitive impairment per a Short Portable Mental Status Questionnaire with more than three errors
- Having completed an advance directive
- Being born in the US
Inclusion Criteria for Family Caregivers:
- Age ≥ 18 years
- Being able to read and respond to questions in English, Mandarin, Cantonese, Japanese, or Korean
- Being identified by the patient as a family caregiver
- Having adequate electronic health literacy with a score of > 30 on the electronic-Health Literacy Scale.