Culturally tailoring an advance care planning intervention for American Indians

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The long-term goal of our research program is to, in collaboration with American Indian and Alaska Native communities, test the efficacy and effectiveness of an advance care planning (ACP) program designed to be culturally-tailored to their end-of-life values and beliefs. Our project builds upon a 20-year collaborative relationship between one of the Principal Investigators and the participating tribe, the Eastern Band of Cherokee Indians, and the other Principal Investigator's 20-year clinical experience as a hospice and palliative care social worker and bereavement coordinator and her Make Your Wishes About You (MY WAY) intervention design and research experience. Our objective in this application is to culturally tailor the MY WAY ACP curriculum and patient education guide using a community-based participatory approach through qualitative and quantitative methods engaging community members, a Community Advisory Board, and a Professional Advisory Board. Our approach is informed by the Consolidated Framework for Implementation Research of how interventions, without tailoring for the target population, are usually a poor fit. Our rationale for this project is that its successful completion will provide the necessary incremental step in developing the evidence for the culturally-tailored MY WAY. Our project has three specific aims: (1) culturally tailor the content of the MY WAY ACP curriculum and patient education guide for the Eastern Band of Cherokee Indians; (2) assess the feasibility of the culturally- tailored MY WAY ACP curriculum and patient education guide with the Eastern Band of Cherokee Indians; and (3) examine preliminary outcomes of the culturally-tailored MY WAY ACP curriculum and patient education guide with 70 Eastern Band of Cherokee Indian members. At the successful completion of this project, we expect to have developed a feasible culturally-tailored MY WAY that through a quasi-experimental waitlist design shows promise as an efficacious program with respect to self-efficacy, readiness, and ACP completion that increases facilitators and decreases barriers to ACP. We will be well-positioned to pursue R01 funding to support a randomized controlled trail of the culturally-tailored MY WAY to assess its efficacy. Importantly, we expect to be among the first to have created an ACP program for American Indians that will lead to dissemination with other American Indian as well as Alaska communities to ensure that all are given the opportunity to express and document their care wishes. Our results can be expected to have a long term positive impact for clinical and public health practice at the Eastern Band of Cherokee Indians and other Native communities through the implementation of the MY WAY ACP curriculum and patient guide that is responsive to the diversity of cultural values as well as beliefs and practices with respect to end-of-life and death across Indian Country.