Cancer Genetics Education for the Deaf Community

描述(由申请人提供)：尽管已经做出了许多努力来教育消费者关于癌症遗传学的信息，但语言偏好为美国手语(ASL)的聋人在学习这些信息方面处于不利地位，因为它主要是以口语或印刷英语提供的。这一点意义重大，因为它表明，聋人面临与癌症遗传学相关的健康差距的风险，而且与听力正常的人相比，结果将更差，尽管预期的癌症患病率，包括具有强烈遗传成分的癌症，在聋人和听力正常的人群中没有区别。通过采用基于网络的信息服务方法的学术-社区伙伴关系模式，这一研究传播项目开始解决语言偏好为ASL的聋人在获取癌症遗传学信息方面的差异。在这个项目中，一个基于证据的英语语言NCI资助的癌症遗传学教育干预被证明可以改善英语语言人群的知识成果，将在文化和语言上量身定做，用于语言偏好为ASL的人群，焦点小组和专家提供投入。教育干预将以双语格式(带有英文字幕或文字：ASL英语的ASL视频)呈现信息，并将通过对100名语言偏好为ASL的聋人进行随机对照实验进行评估：(A)比较双语(ASL英语)教育干预与单语格式(仅英文文本)对遗传服务的理解和态度的影响；以及(B)确定可能特别受益于以双语格式接收癌症基因信息的亚群。癌症遗传学教育材料将通过DeafMD.org传播，DeafMD.org是一个非营利性网站，以双语格式为聋人社区提供医疗保健信息。将进行传播后评估，以评估有关使用干预措施的一系列结果。这项建议是独一无二的，因为它涉及聋人和听力调查人员、学术界和聋人社区之间的合作伙伴关系，以及一个旨在增加聋人做出知情医疗决定的现有网站。该项目将对服务不足人口的医疗保健产生直接影响，重要的是，它可能导致更早、更有效的干预和高效的医疗保健。我们的项目对聋人社区的关注直接解决了R25癌症研究教育资助说明中阐明的优先需求。也就是说，开发有效的创新传播方法，以增加基于证据的预防干预措施适应族裔和语言多样化的社区，目标是减少聋人社区的健康差距。 公共卫生相关性：该项目将增加聋人社区获得文化和语言上适当的癌症遗传学信息的机会，并提供有关双语形式(ASL英语)对聋人对遗传服务的理解和态度的影响的信息。这项研究填补了聋人社区在解决癌症遗传相关健康差异的机制和方法方面的重要知识空白。

DESCRIPTION (provided by applicant): Although much effort has been made to educate consumers about cancer genetics information, Deaf individuals whose linguistic preference is American Sign Language (ASL) are at a disadvantage to learning this information because it is predominantly available in spoken or print English. This is significant because it suggests that Deaf individuals are at risk for cancer genetics-related health disparities, and will have poorer outcomes compared to hearing individuals, even though the expected prevalence of cancer, including cancer conditions with a strong genetic component does not differ between deaf and hearing populations. Through an academic-community partnership model that embraces a web-based information services approach, this research dissemination project begins to address the disparity in access to cancer genetics information experienced by Deaf individuals whose linguistic preference is ASL. For this project, an evidence-based English language NCI-funded cancer genetics educational intervention shown to improve knowledge outcomes in English-language populations will be culturally and linguistically tailored for use in a population whose linguistic preference is ASL, with input from focus groups and experts. The education intervention will present information in a bilingual format (ASL videos with English captioning or text: ASL+English) and will be evaluated using a randomized, controlled experiment with 100 Deaf individuals whose linguistic preference is ASL (a) to compare the effect of a bilingual (ASL+English) education intervention on comprehension and attitudes toward genetic services compared to a monolingual format (English text only); and (b) to identify subgroups who may particularly benefit from receiving cancer genetic information in a bilingual format. The cancer genetics education material will be disseminated through DeafMD.org, a non-profit website that provides healthcare information for the Deaf community using a bilingual format. A post-dissemination evaluation will be conducted to evaluate a range of outcomes regarding use of the intervention. This proposal is unique because it involves partnerships between deaf and hearing investigators, academia and the Deaf community, and researchers and an established website that aims to increase informed healthcare decisions among deaf people. This project will have a direct impact on the healthcare of an underserved population and, importantly, could lead to earlier and more effective intervention and efficient healthcare. Our project's focus on the Deaf community directly addresses a priority need, as articulated in the R25 Cancer Research Education Grant description. That is, to develop effective innovative dissemination approaches to increase the adaptation of evidence-based preventive interventions to ethnically and linguistically diverse communities, with the goal of reducing health disparities in the Deaf community. PUBLIC HEALTH RELEVANCE: This project will increase the Deaf community's access to culturally and linguistically appropriate cancer genetics information and provide information on the effect of a bilingual format (ASL+English) on Deaf individuals' comprehension and attitudes toward genetic services. This research fills an important gap in knowledge about mechanisms and methods for addressing cancer genetic-related health disparities in the Deaf community.