Cancer Genetics Education for the Deaf Community

聋人社区的癌症遗传学教育

• 批准号: 8018206
• 负责人: Christina Germaine Palmer
• 金额: $ 30.2万
• 依托单位: UNIVERSITY OF CALIFORNIA LOS ANGELES
• 依托单位国家: 美国
• 财政年份: 2011
• 资助国家: 美国
• 起止时间: 2011-08-04 至 2014-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8018206
• 关键词: Academia; Address; Adult; Attitude; Breast; Cancer Control; Colorectal Cancer; Communication Barriers; Communities; Comprehension; Data; Disadvantaged; Education; Educational Intervention; Educational Materials; Effectiveness; English Language; Ensure; Eugenics; Evaluation; Exposure to; Focus Groups; Funding; Genetic; Genetic Counseling; Genetic Services; Goals; Grant; Happiness; Health; Health Personnel; Health Promotion; Health education; Healthcare; Hearing; Hearing Impaired Persons; Individual; Information Services; Internet; Intervention; Knowledge; Language; Lead; Learning; Linguistics; Malignant Neoplasms; Malignant neoplasm of ovary; Methodology; Methods; Mind; Minority; Mission; Modeling; Names; Online Systems; Outcome; Phase; Population; Prevalence; Preventive Intervention; Printing; Randomized; Research; Research Personnel; Risk; Sign Language; Subgroup; Testing; Text; Underserved Population; Visual; anticancer research; base; cancer genetics; cancer prevention; design; dissemination research; effective intervention; empowered; evidence base; experience; health disparity; health literacy; improved; innovation; literacy; novel; peer; preference; research study; visual media; web site

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.

描述（由申请人提供）：尽管为消费者提供了癌症遗传学信息的努力，但语言偏爱是美国手语（ASL）的聋人在学习此信息方面处于不利影响，因为它主要在口语或印刷英语中使用。这很重要，因为它表明聋人面临与癌症遗传学相关的健康差异的风险，并且与听力个体相比，聋哑人的预期差异较差，即使癌症的预期患病率（包括具有强遗传成分的癌症状况）在聋人和听力人群之间没有差异。通过采用基于Web的信息服务方法的学术社区合作伙伴模型，该研究传播项目开始解决访问语言偏爱的聋人经历的癌症遗传学信息的差异。对于这个项目，一种基于证据的英语NCI资助的癌症遗传学教育干预措施，可以改善英语人群的知识成果，在文化和语言上量身定制，供语言偏好是ASL的人群中，并提供了焦点小组和专家的投入。教育干预措施将以双语格式（带有英语字幕或文本：ASL+英语的ASL视频：ASL+英语）呈现信息，并将使用100个聋哑人进行随机，受控的实验评估，其语言偏好是ASL（a），以比较双语（ASL+英语）对遗传学的理解和遗传服务的效果（ASL+英语）的效果，仅比较元素的文本（与遗传学）相比， （b）确定可能从双语格式接收癌症遗传信息中特别受益的亚组。癌症遗传学教育材料将通过Deafmd.org传播，Deafmd.org是一个非营利网站，该网站使用双语格式为聋人社区提供医疗保健信息。将进行散文后评估，以评估有关使用干预措施的一系列结果。该提案之所以独特，是因为它涉及聋人与听力调查员，学术界和聋人社区之间的合作伙伴关系，以及研究人员以及一个建立的网站，旨在增加聋人之间知情的医疗保健决策。该项目将直接影响服务不足的人群的医疗保健，重要的是，可能导致更早，更有效的干预和有效的医疗保健。正如R25癌症研究教育赠款描述所阐明的那样，我们项目对聋人社区的关注直接解决了优先需求。也就是说，要开发有效的创新传播方法，以增加对种族和语言多元化社区的循证预防干预措施的适应，以减少聋人社区的健康差异。 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，并提供有关双语格式（ASL+英语）对聋人个人理解和对遗传服务的态度的影响的信息。这项研究填补了有关解决聋人社区癌症遗传相关健康差异的机制和方法的重要差距。