Research Project
Development of a resilience-building intervention to facilitate advance care planning between Chinese American patients and their family caregivers
Avoidance of advance care planning (ACP) discussions and failure to complete advance directives can delay the introduction of palliative and hospice care and risk patients receiving costly and aggressive care at the end of life. ACP is a process to facilitate decision-making for future medical care and document values and preferences. Despite the proven benefits of ACP—in achieving satisfying, goalconcordant care at the end of life, better communication, and better quality of death—less than 15% of Chinese Americans complete advance directives. That is less than half of the 37% completion rate in the US general population. This disparity in the use of ACP between White Americans and Chinese Americans may extend to disparities in end-of-life care, including rates of hospice use and prevalence of unwanted aggressive treatments...
- Principal Investigator
- Longcoy, Li-Ting H.
- Start Date
- 2023-04-01
- End Date
- 2024-06-30
- Funding Source
- University of Chicago
Abstract
Avoidance of advance care planning (ACP) discussions and failure to complete advance directives can delay the introduction of palliative and hospice care and risk patients receiving costly and aggressive care at the end of life. ACP is a process to facilitate decision-making for future medical care and document values and preferences. Despite the proven benefits of ACP—in achieving satisfying, goalconcordant care at the end of life, better communication, and better quality of death—less than 15% of Chinese Americans complete advance directives. That is less than half of the 37% completion rate in the US general population. This disparity in the use of ACP between White Americans and Chinese Americans may extend to disparities in end-of-life care, including rates of hospice use and prevalence of unwanted aggressive treatments. To address such disparities in end-of-life care, we will develop and assess the feasibility of a culturally tailored resilience-building intervention to help Chinese Americans with cancer or heart disease and their family caregivers engage in ACP discussions. Increasing resilience skills can help by empowering both patients and family caregivers to access and utilize external resources (e.g., social support from families and health care providers), internal resources (e.g., individual strengths and coping skills), and existential resources (e.g., meaning-making and finding gratitude) to address the stress they face during ACP discussions. Resilience-building has already shown promising results in reducing cancer distress in adolescents and young adults with cancer and their parents. Development of this intervention will be guided by the 3-phase multiphase optimization strategy (MOST), using a dyadic intervention approach by including both Chinese Americans with cancer or heart disease and their family caregivers. This pilot study will use the first phase of MOST to lay the groundwork for optimizing the intervention to ensure its effectiveness, affordability, scalability, and efficiency. The specific aims are to (1) conduct a qualitative analysis of semi-structured interviews with 10 religious leaders to identify barriers and facilitators to discussing ACP and death-related topics among Chinese Americans with cancer or heart disease in Chicago; (2) conduct a usability test of a culturally tailored resilience-building intervention prototype to collect feedback on the intervention’s content using think-aloud interviews; and (3) conduct a process evaluation to determine the feasibility, acceptability, and appropriateness of the intervention prototype. Aims 2 and 3 will be conducted among 18 pairs of Chinese American patients and family caregivers in the Chicago region. The expected outcomes are identification and development of the essential components of the culturally tailored resilience-building intervention and data that contributes to a revised version of the intervention to be optimized in future research, including an R21 application, that follows the second phase of MOST.