Deaf people who use American Sign Language (ASL) comprise understudied language and cultural minority groups. Communication and sociocultural barriers largely exclude deaf ASL users from health surveillance and research activities. To advance the knowledge-base related to deaf people and health, we need accessible and effective informed consent processes in order to include deaf ASL users in health research. Barriers to standard written English informed consent include the low English reading ability of many adults deaf since birth or early childhood. Many adults deaf since birth/early childhood also have limited access to ambient information, such as from overheard conversation and radio. The resulting limited fund of information, coupled with low English literacy, renders written English consent forms ineffective for most deaf ASL users. This study will examine three distinct modalities of informed consent communication with deaf adult ASL users and compare their effectiveness using measures of comprehension, willingness to engage in research (post-consent), and trust. The three modalities are: (1) Written English, (2) direct Translation of the same written English consent material into ASL, presented on film featuring one person using ASL, and (3) Dialogic Adaptation of the same written English consent material, presented on film as a dialogue amongst several deaf individuals where the content of their conversation addresses the information from the written English informed consent source document and potential fund of information gaps. Findings from this research will inform research on informed consent with deaf ASL users and other language minority populations, and will pave the way for increased participation of deaf ASL users in health research. This research begins to address the Healthy People 2020 call to expand the knowledge base about determinants of health for people with disabilities. This proposed research will take an approach used with health education materials meant for deaf audiences and apply it to the process of delivering research consent information. The video-based consent modalities evaluated here have implications for consent/assent with other groups, including other language minority groups and those with low literacy, including young children.

Public Health Relevance

Health research often excludes deaf people, and information on research risk and consent is often inaccessible to deaf people. By improving research consent with deaf people who communicate in sign language, health researchers will be able to work with deaf sign language users to start to address public health knowledge gaps related to deaf people and health.

Agency
National Institute of Health (NIH)
Institute
National Center for Advancing Translational Sciences (NCATS)
Type
Linked Specialized Center Cooperative Agreement (UL1)
Project #
5UL1TR000042-10
Application #
8901332
Study Section
Special Emphasis Panel (ZRG1-HDM-B (90))
Program Officer
Davis Nagel, Joan
Project Start
2006-09-30
Project End
2016-06-30
Budget Start
2015-07-01
Budget End
2016-06-30
Support Year
10
Fiscal Year
2015
Total Cost
$3,674,728
Indirect Cost
$870,189
Name
University of Rochester
Department
Public Health & Prev Medicine
Type
Schools of Dentistry
DUNS #
041294109
City
Rochester
State
NY
Country
United States
Zip Code
14627
Meng, Ying; Groth, Susan W; Stewart, Patricia et al. (2018) An Exploration of the Determinants of Gestational Weight Gain in African American Women: Genetic Factors and Energy Expenditure. Biol Res Nurs 20:118-125
Schott, Eric M; Farnsworth, Christopher W; Grier, Alex et al. (2018) Targeting the gut microbiome to treat the osteoarthritis of obesity. JCI Insight 3:
Mix, Doran S; Stoner, Michael C; Day, Steven W et al. (2018) Manufacturing Abdominal Aorta Hydrogel Tissue-Mimicking Phantoms for Ultrasound Elastography Validation. J Vis Exp :
Rosenberg, Alexander; Fucile, Christopher; White, Robert J et al. (2018) Visualizing nationwide variation in medicare Part D prescribing patterns. BMC Med Inform Decis Mak 18:103
Johnson, Cynthia R; Smith, Tristram; DeMand, Alexandra et al. (2018) Exploring sleep quality of young children with autism spectrum disorder and disruptive behaviors. Sleep Med 44:61-66
Vitale, Karen; Newton, Gail L; Abraido-Lanza, Ana F et al. (2018) Community Engagement in Academic Health Centers: A Model for Capturing and Advancing Our Successes. J Community Engagem Scholarsh 10:81-90
Loelius, Shannon G; Lannan, Katie L; Blumberg, Neil et al. (2018) The HIV protease inhibitor, ritonavir, dysregulates human platelet function in vitro. Thromb Res 169:96-104
Loelius, Shannon G; Spinelli, Sherry L; Lannan, Katie L et al. (2018) In Vitro Methods to Characterize the Effects of Tobacco and Nontobacco Products on Human Platelet Function. Curr Protoc Toxicol 76:e46
Rice, John D; Strawderman, Robert L; Johnson, Brent A (2018) Regularity of a renewal process estimated from binary data. Biometrics 74:566-574
Farnsworth, Christopher W; Schott, Eric M; Benvie, Abigail et al. (2018) Exacerbated Staphylococcus aureus Foot Infections in Obese/Diabetic Mice Are Associated with Impaired Germinal Center Reactions, Ig Class Switching, and Humoral Immunity. J Immunol 201:560-572

Showing the most recent 10 out of 250 publications