Cultural tailoring advance care planning for an American Indian community: make your wishes about you.

Abstract

BACKGROUND Advance care planning empowers people by allowing them some control over certain healthcare decisions in the event they are unable. Yet, advance care planning rates in the American Indian and Alaska Native populations are low. Thus, we culturally tailored the Make Your Wishes About You (MY WAY), an intervention to improve advance care planning access and completion for American Indian peoples. METHODS In partnership with an American Indian Tribe, the project took a community-based participatory orientation and relied on a Community Advisory Board and a Professional Advisory Board. The culturally tailoring was a 15-step process. These steps allowed us to ensure that the tailoring reflects community-specific norms and preferences, greater reliance on visual images and local idioms of expression, more appropriate attention to family roles, and inclusion of spiritual elements. RESULTS A four-phase cultural tailoring framework emerged with each phase centering around listening, learning, and analyzing with tailoring occurring between each phase. A culturally tailored MY WAY was created, which was delivered in a manner that reflected Tribal citizenss' preferences. Materials included Tribal language, local idioms of expression, attention to family roles, and appropriate inclusion of spiritual elements. The materials were rated high on a content validity index by the advisory board members. CONCLUSION There is a growing interest in tailoring existing evidence-based programs with relatively little in the literature offering guidance. By sharing our efforts and experiences in culturally tailoring an advance care planning program for an American Indian Tribe, we hope that it will serve useful for future efforts in ensuring that evidence-based programming reaches those in greatest need. While this project was rooted in the core Indigenous values of community, ceremony or spirituality, language, and place it also lends itself to broader translation across different populations.