Background: American Indian and Alaska Native peoples experience poor end-of-life care, including more hospitalizations and lower use of hospice and do-not-resuscitate orders. Although advance care planning (ACP) can improve end-of-life care, ACP rates are disproportionately low in American Indians and Alaska Natives.
Objective: We culturally tailored and delivered an existing evidence-based ACP program for an American Indian tribal community. Here, we present the protocol for assessing the intervention's feasibility and efficacy.
Methods: We measured feasibility via participant recruitment, participants' evaluation (acceptability, appropriateness, comprehension, and satisfaction), and intervention fidelity. Recruitment was measured with participant screening, eligibility, enrollment, and retention. Participant's evaluation of the intervention was measured with surveys. Fidelity was measured with direct observation and the Make Your Wishes About You (MY WAY) Fidelity Checklist Tool. To assess the intervention's efficacy, we used a quasi-experimental waitlist control design with 2 cohorts who were surveyed each on three separate occasions. The intervention's efficacy was assessed by the following: ACP barriers and facilitators as well as ACP self-efficacy, readiness, and completion.
Results: A total of 166 participants were screened for eligibility; 11 were deemed ineligible, and 155 participants were enrolled in the study. Of those enrolled, 113 completed the intervention and will be included in subsequent analyses. We finalized data collection in January 2023, and analyses are underway. Study enrollment was successful, and we expect that participants will report high levels of acceptability, appropriateness, comprehension, and satisfaction with the intervention. We expect that the intervention was implemented with fidelity and will demonstrate decreases in ACP barriers and increases in ACP facilitators, self-efficacy, readiness, and completion.
Conclusions: Enrolling over twice as many participants as we had hoped suggests that members of this tribal community are willing to engage in end-of-life ACP. We were able to implement a waitlist study design to show that a culturally tailored ACP program for a tribal community is feasible.
Trial registration: ClinicalTrials.gov NCT05304117; https://clinicaltrials.gov/study/NCT05304117.
International registered report identifier (irrid): DERR1-10.2196/50654.
Keywords: American Indian or Alaskan Native; advance care planning; end-of-life care.
©Elizabeth Anderson, R Turner Goins, Emily A Haozous, April Schweinhart. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 29.12.2023.