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.
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.
|Kobayashi, Yoko; Boudreault, Patrick; Hill, Karin et al. (2013) Using a social marketing framework to evaluate recruitment of a prospective study of genetic counseling and testing for the deaf community. BMC Med Res Methodol 13:145|