Start Date

9-3-2018 8:00 AM

Document Type

Poster

Description

One of the most severely underserved populations in the U.S. health system is the Deaf community - a sociolinguistic minority group that communicates using American Sign Language (ASL). A recent ASL health survey found startling disparities in obesity, domestic violence, and suicide compared to the general population. Further research on these disparities is lacking due, in part, to researchers' use of recruitment, sampling, and data collection procedures that are inaccessible to Deaf ASL users. Another barrier to Deaf people's research engagement is fear and mistrust of the biomedical community. Rather than recognizing Deaf people as a cultural group, doctors and biomedical researchers often follow the medical model of deafness, which aims to cure or fix hearing loss and, historically, has sought to eradicate deafness - an approach considered a form of eugenics among members of the Deaf community. To address these issues of inaccessibility and mistrust, our community-engaged research team is conducting a two-year R21 study funded by the National Institute on Deafness and Other Communication Disorder (NIDCD) to: 1) Identify barriers and facilitators to Deaf community involvement in research and develop a training video for researchers to improve the research informed consent process with Deaf participants; and, 2) Test the training video regarding delivering culturally and linguistically appropriate informed consent with Deaf research participants using an ASL interpreter. During the poster session, we will summarize our formative findings from Deaf community forums and focus groups, as well as exhibit clips of the researcher training video that is currently under development.

Keywords

Deaf people, deaf community, Deaf ACCESS, AdaptingConsent, ASL, biomedical research studies, participation, training

Creative Commons License

Creative Commons Attribution-Noncommercial-Share Alike 3.0 License
This work is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 License.

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Mar 9th, 8:00 AM

Deaf ACCESS: Adapting Consent through Community Engagement and State-of-the-art Simulation (poster)

One of the most severely underserved populations in the U.S. health system is the Deaf community - a sociolinguistic minority group that communicates using American Sign Language (ASL). A recent ASL health survey found startling disparities in obesity, domestic violence, and suicide compared to the general population. Further research on these disparities is lacking due, in part, to researchers' use of recruitment, sampling, and data collection procedures that are inaccessible to Deaf ASL users. Another barrier to Deaf people's research engagement is fear and mistrust of the biomedical community. Rather than recognizing Deaf people as a cultural group, doctors and biomedical researchers often follow the medical model of deafness, which aims to cure or fix hearing loss and, historically, has sought to eradicate deafness - an approach considered a form of eugenics among members of the Deaf community. To address these issues of inaccessibility and mistrust, our community-engaged research team is conducting a two-year R21 study funded by the National Institute on Deafness and Other Communication Disorder (NIDCD) to: 1) Identify barriers and facilitators to Deaf community involvement in research and develop a training video for researchers to improve the research informed consent process with Deaf participants; and, 2) Test the training video regarding delivering culturally and linguistically appropriate informed consent with Deaf research participants using an ASL interpreter. During the poster session, we will summarize our formative findings from Deaf community forums and focus groups, as well as exhibit clips of the researcher training video that is currently under development.

 

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