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UPA Perpustakaan Universitas Jember

Bilingual Cancer Genetic Education Modules for the Deaf Community: Development and Evaluation of the Online Video Material

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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.

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