Costigan Heather J, VanDyke Erika, Calo William A, Tucci Amy, Van Scoy Lauren J
Penn State College of Medicine, Hershey, PA, USA.
Hospice Foundation of America, Washington DC, USA.
Am J Hosp Palliat Care. 2024 Dec 19:10499091241306427. doi: 10.1177/10499091241306427.
Health inequities in Hispanic populations require community-engaged solutions. Engaging Hispanic communities in research related to advance care planning (ACP) is critical to inform the development and evaluation of culturally appropriate interventions.
To understand how to best adapt and implement Spanish-language ACP interventions in Hispanic communities across the US.
We apply the Framework for Reporting Adaptations and Modifications to Evidence-based Interventions (FRAME) to detail experiences during implementation of the national Project Talk Trial (PTT) that delivers two ACP interventions using a community-based delivery model. Semi-structured interviews with Hispanic community event hosts and research assistants (RAs) were conducted to explore challenges and solutions to implementation. Thematic analysis was applied to transcripts.
Three themes from the community hosts (n = 9) were: (1) certified translation professional services were inadequate to successfully adapt interventions for diverse Hispanic communities; (2) a lack of Spanish-speaking RAs undermined the intention to address health inequities in the research; and (3) cultural norms, such as RSVP systems, differ in Hispanic populations. Themes from the RA interviews (n = 7) include: (1) discomfort with being unable to communicate appropriately with the research participants; and (2) improved connection and event flow when bilingual RAs attended events.
Our work highlights the value of a strong community-based delivery model, attention to local dialects and cultural nuances, the need for Spanish-speaking workforce and for balancing fidelity across national sites with adaptability when conducting rigorous research.
The trial titled "Engaging underserved communities in end-of-life conversations: a cluster, randomized controlled trial" is registered at clinicaltrials.gov [NCT04612738].
西班牙裔人群中的健康不平等问题需要社区参与的解决方案。让西班牙裔社区参与与预先护理计划（ACP）相关的研究对于为文化上合适的干预措施的开发和评估提供信息至关重要。
了解如何在美国各地的西班牙裔社区中最佳地调整和实施西班牙语的ACP干预措施。
我们应用基于证据的干预措施的报告调整和修改框架（FRAME）来详细说明国家项目谈话试验（PTT）实施过程中的经验，该试验使用基于社区的交付模式提供两种ACP干预措施。对西班牙裔社区活动主持人和研究助理（RAs）进行了半结构化访谈，以探讨实施过程中的挑战和解决方案。对访谈记录进行了主题分析。
社区主持人（n = 9）提出的三个主题是：（1）认证翻译专业服务不足以成功地为不同的西班牙裔社区调整干预措施；（2）缺乏会说西班牙语的研究助理破坏了研究中解决健康不平等问题的意图；（3）西班牙裔人群中的文化规范，如回复系统，有所不同。研究助理访谈（n = 7）的主题包括：（1）因无法与研究参与者进行适当沟通而感到不适；（2）双语研究助理参加活动时改善了联系和活动流程。
我们的工作强调了强大的基于社区的交付模式的价值、对当地方言和文化细微差别的关注、对会说西班牙语的工作人员的需求，以及在进行严格研究时在全国各地点之间平衡保真度与适应性的必要性。
题为“让服务不足的社区参与临终谈话：一项整群随机对照试验”的试验已在clinicaltrials.gov上注册 [NCT04612738]。
