Boudreault Patrick, Wolfson Alicia, Berman Barbara, Venne Vickie L, Sinsheimer Janet S, Palmer Christina
Department of Interpretation and Translation, Gallaudet University, Washington, DC, USA.
Department of Modern and Classical Languages, University of San Francisco, San Francisco, CA, USA.
J Genet Couns. 2018 Apr;27(2):457-469. doi: 10.1007/s10897-017-0188-2. Epub 2017 Dec 20.
Health information about inherited forms of cancer and the role of family history in cancer risk for the American Sign Language (ASL) Deaf community, a linguistic and cultural community, needs improvement. Cancer genetic education materials available in English print format are not accessible for many sign language users because English is not their native or primary language. Per Center for Disease Control and Prevention recommendations, the level of literacy for printed health education materials should not be higher than 6th grade level (~ 11 to 12 years old), and even with this recommendation, printed materials are still not accessible to sign language users or other nonnative English speakers. Genetic counseling is becoming an integral part of healthcare, but often ASL users are not considered when health education materials are developed. As a result, there are few genetic counseling materials available in ASL. Online tools such as video and closed captioning offer opportunities for educators and genetic counselors to provide digital access to genetic information in ASL to the Deaf community. The Deaf Genetics Project team used a bilingual approach to develop a 37-min interactive Cancer Genetics Education Module (CGEM) video in ASL with closed captions and quizzes, and demonstrated that this approach resulted in greater cancer genetic knowledge and increased intentions to obtain counseling or testing, compared to standard English text information (Palmer et al., Disability and Health Journal, 10(1):23-32, 2017). Though visually enhanced educational materials have been developed for sign language users with multimodal/lingual approach, little is known about design features that can accommodate a diverse audience of sign language users so the material is engaging to a wide audience. The main objectives of this paper are to describe the development of the CGEM and to determine if viewer demographic characteristics are associated with two measurable aspects of CGEM viewing behavior: (1) length of time spent viewing and (2) number of pause, play, and seek events. These objectives are important to address, especially for Deaf individuals because the amount of simultaneous content (video, print) requires cross-modal cognitive processing of visual and textual materials. The use of technology and presentational strategies is needed that enhance and not interfere with health learning in this population.
对于美国手语（ASL）聋人社群这一语言和文化社群而言，关于遗传性癌症的健康信息以及家族病史在癌症风险中的作用方面的情况仍有待改善。许多手语使用者无法获取以英文印刷形式提供的癌症遗传教育材料，因为英语并非他们的母语或主要语言。根据疾病控制与预防中心的建议，印刷版健康教育材料的识字水平不应高于六年级水平（约11至12岁），即便有此建议，手语使用者或其他非英语母语者仍然无法获取印刷材料。遗传咨询正成为医疗保健的一个重要组成部分，但在开发健康教育材料时，手语使用者往往未被考虑在内。因此，很少有以美国手语提供的遗传咨询材料。诸如视频和隐藏式字幕等在线工具为教育工作者和遗传咨询师提供了机会，以便向聋人社群以美国手语形式提供对遗传信息的数字访问。聋人遗传学项目团队采用双语方法，制作了一个时长37分钟的交互式癌症遗传学教育模块（CGEM）视频，配有隐藏式字幕和测验，并证明与标准英文文本信息相比，这种方法能带来更多的癌症遗传知识，并增加了寻求咨询或检测的意愿（帕尔默等人，《残疾与健康杂志》，10(1):23 - 32，2017）。尽管已经采用多模态/语言方法为手语使用者开发了视觉增强型教育材料，但对于能够适应不同手语使用者群体从而使材料吸引广大受众的设计特征却知之甚少。本文的主要目标是描述CGEM的开发过程，并确定观众的人口统计学特征是否与CGEM观看行为的两个可衡量方面相关：（1）观看时长；（2）暂停、播放和搜索事件的数量。解决这些目标很重要，特别是对于聋人个体而言，因为同时出现的内容（视频、文字）数量需要对视觉和文本材料进行跨模态认知处理。需要使用能够增强而非干扰该人群健康学习的技术和呈现策略。
