Cancer Genetics Education for the Deaf Community

描述（由申请人提供）：尽管已经做出了很多努力来教育消费者有关癌症遗传学信息，但语言偏好为美国手语（ASL）的聋人在学习这些信息时处于不利地位，因为这些信息主要以口语或印刷体英语提供。这是很重要的，因为它表明聋人有癌症遗传相关的健康差异的风险，与听力正常的人相比，他们的结果更差，即使预期的癌症患病率，包括具有强烈遗传成分的癌症状况，在聋人和听力正常的人群之间没有差异。通过一个包含基于网络的信息服务方法的学术社区合作模式，本研究传播项目开始解决语言偏好为美国手语的聋人在获取癌症遗传信息方面的差异。在这个项目中，一项由nci资助的基于证据的英语癌症遗传学教育干预表明，它可以提高英语人群的知识成果，并将根据焦点小组和专家的意见，在文化和语言上量身定制，用于语言偏好为美国手语的人群。教育干预将以双语形式呈现信息（带有英文字幕或文字的美国手语视频：美国手语+英语），并将通过随机对照实验对100名语言偏好为美国手语的聋人进行评估(a)比较双语（美国手语+英语）教育干预与单语形式（仅英语文本）相比对理解和对遗传服务态度的影响；(b)确定可能特别受益于以双语格式接收癌症遗传信息的亚群体。癌症遗传学教育材料将通过DeafMD.org这一非盈利网站发布，该网站使用双语格式为聋人社区提供医疗保健信息。将进行传播后评价，以评估有关使用干预措施的一系列结果。这项提议是独一无二的，因为它涉及聋人和听力调查人员、学术界和聋人社区、研究人员和一个旨在增加聋人医疗保健决策的既定网站之间的合作关系。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，可能导致更早和更有效的干预和高效的医疗保健。我们项目的重点是聋人社区直接解决了一个优先需求，正如R25癌症研究教育资助描述中所阐述的那样。也就是说，制定有效的创新传播方法，使以证据为基础的预防干预措施更多地适用于种族和语言多样化的社区，其目标是缩小聋人社区的健康差距。

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.