Accepted for/Published in: JMIR Research Protocols
Date Submitted: Jul 20, 2023
Date Accepted: Jul 31, 2023
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Make Your Wishes About You (MY WAY): Protocol for a culturally tailored advance care planning intervention for an American Indian Tribe
ABSTRACT
Background:
American Indian and Alaska Native people (AIANs) experience poor end-of-life care. Although advanced care planning (ACP) can improve end-of-life care, ACP rates are disproportionately low among AIANs. As little work has been done to increase ACP opportunities for AIANs, we culturally tailored an ACP intervention for a specific AIAN community.
Objective:
This study aimed to take an existing, evidence-based program for ACP and tailor the delivery method and content to better meet the needs of one AIAN tribe. Once finalized, the tailored intervention was delivered, evaluated, and tested among participants representing geographically distinct members of the same AIAN community. We plan to test outcomes related to feasibility, acceptability, readiness, self-efficacy, and advanced care planning behavior.
Methods:
Cultural Tailoring took place in four phases. In each phase, the content and delivery methods of the ACP intervention were revised and tailored to the needs of the AIAN community. The first phase involved identifying the issues of concern to be addressed in the tailoring process. The second phase was characterized by soliciting feedback from the community and advisory boards. The third phase involved active testing of the tailored delivery and content through the implementation of a waitlist comparison design with two cohorts: cohort 1 received the intervention first and completed a baseline, 8-week follow up survey, and a 6-month follow-up evaluation. Cohort 2 completed a first baseline interview six months before the intervention, and a second baseline interview immediately before participating in the intervention. Cohort 2 also completed an 8-week follow-up interview after the intervention was complete. To further evaluate the adapted content, we conducted debriefing interviews with selected participants after completing the intervention. Phase four included finalizing the intervention content after analyzing all evaluation and outcome results.
Results:
Cultural tailoring has been completed and the intervention was delivered to 155 participants. We finalized data collection in January 2023.
Conclusions:
The expected results of this study are twofold: to create a culturally tailored ACP intervention for an AIAN tribe and to show increases in readiness and self-efficacy for ACP and ACP completion. The tailored intervention has the potential to impact the disparate end-of-life outcomes experienced by AIAN communities. Clinical Trial: NCT05304117
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