Anderson Elizabeth, Goins R Turner, Haozous Emily A, Schweinhart April
Pacific Institute for Research and Evaluation, Chapel Hill, NC, United States.
College of Health and Human Sciences, Western Carolina University, Cullowhee, NC, United States.
JMIR Res Protoc. 2023 Dec 29;12:e50654. doi: 10.2196/50654.
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.
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.
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.
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.
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.
ClinicalTrials.gov NCT05304117; https://clinicaltrials.gov/study/NCT05304117.
INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/50654.
美国印第安人和阿拉斯加原住民的临终关怀情况不佳,包括住院次数更多,临终关怀和“不要复苏”医嘱的使用率较低。尽管预先护理计划(ACP)可以改善临终关怀,但美国印第安人和阿拉斯加原住民的ACP实施率却出奇地低。
我们针对一个美国印第安部落社区,对现有的基于证据的ACP项目进行了文化适应性调整并实施。在此,我们介绍评估该干预措施可行性和有效性的方案。
我们通过参与者招募、参与者评估(可接受性、适宜性、理解程度和满意度)以及干预保真度来衡量可行性。招募情况通过参与者筛选、资格审查、入组和留存率来衡量。参与者对干预措施的评估通过调查进行。保真度通过直接观察和“说出你的愿望”(MY WAY)保真度清单工具来衡量。为了评估干预措施的有效性,我们采用了准实验性等待名单对照设计,将两个队列在三个不同时间点分别进行调查。干预措施的有效性通过以下方面进行评估:ACP的障碍和促进因素以及ACP自我效能感、准备情况和完成情况。
共有166名参与者接受资格筛选;11名被判定不符合资格,155名参与者入组研究。在这些入组者中,113名完成了干预措施,将纳入后续分析。我们于2023年1月完成数据收集,分析正在进行中。研究入组成功,我们预计参与者将报告对该干预措施具有较高的可接受性、适宜性、理解程度和满意度。我们预计该干预措施得到了忠实执行,并将证明ACP的障碍减少,促进因素、自我效能感、准备情况和完成情况增加。
入组的参与者数量是我们预期的两倍多,这表明这个部落社区的成员愿意参与临终ACP。我们能够实施等待名单研究设计,以表明针对部落社区的文化适应性ACP项目是可行的。
ClinicalTrials.gov NCT05304117;https://clinicaltrials.gov/study/NCT05304117。
国际注册报告标识符(IRRID):DERR1-10.2196/50654。