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

  • Original Research
  • Published:
Journal of Genetic Counseling

Abstract

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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Acknowledgements

We thank the individuals who participated in our study. We also thank Sylvia Wood for her contributions to the development of the Cancer Genetics Education Module and Lionel Duarte for providing statistical assistance.

Funding

This study was funded by the National Cancer Institute R25CA154290 which had no input on the design and conduct of the study; collection, management, analysis, and interpretation of the data; and preparation, review, or approval of the manuscript.

Author information

Authors and Affiliations

  1. Department of Interpretation and Translation, Gallaudet University, Washington, DC, USA

    Patrick Boudreault

  2. Department of Modern and Classical Languages, University of San Francisco, San Francisco, CA, USA

    Patrick Boudreault

  3. Department of Psychiatry & Biobehavioral Sciences, David Geffen School of Medicine at UCLA, Los Angeles, CA, USA

    Alicia Wolfson & Christina Palmer

  4. Department of Health Policy and Management, UCLA Fielding School of Public Health, Los Angeles, CA, USA

    Barbara Berman

  5. Genomic Medicine Service, Veterans Health Administration, Salt Lake City, UT, USA

    Vickie L. Venne

  6. Department of Human Genetics, David Geffen School of Medicine at UCLA, Los Angeles, CA, USA

    Janet S. Sinsheimer & Christina Palmer

  7. Department of Biomathematics, David Geffen School of Medicine at UCLA, Los Angeles, CA, USA

    Janet S. Sinsheimer & Christina Palmer

  8. Department of Biostatistics, UCLA Fielding School of Public Health, Los Angeles, CA, USA

    Janet S. Sinsheimer

  9. Institute for Society and Genetics, UCLA, Los Angeles, CA, USA

    Janet S. Sinsheimer & Christina Palmer

Authors
  1. Patrick Boudreault
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  2. Alicia Wolfson
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  3. Barbara Berman
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  4. Vickie L. Venne
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  5. Janet S. Sinsheimer
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  6. Christina Palmer
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Corresponding author

Correspondence to Patrick Boudreault.

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Conflict of Interest

Patrick Boudreault, Alicia Wolfson, Barbara Berman, Vickie L. Venne, Janet S. Sinsheimer, and Christina Palmer declare that they have no conflict of interest.

Human Studies and Informed Consent

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients for being included in the study.

Animal Studies

No animal studies were carried out by the authors for this article.

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Boudreault, P., Wolfson, A., Berman, B. et al. Bilingual Cancer Genetic Education Modules for the Deaf Community: Development and Evaluation of the Online Video Material. J Genet Counsel 27, 457–469 (2018). https://doi.org/10.1007/s10897-017-0188-2

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  • DOI: https://doi.org/10.1007/s10897-017-0188-2

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