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.

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 #
5UL1TR000042-08
Application #
8549853
Study Section
Special Emphasis Panel (ZRG1-HDM-B (90))
Program Officer
Rosenblum, Daniel
Project Start
2006-09-30
Project End
2016-06-30
Budget Start
2013-07-01
Budget End
2014-06-30
Support Year
8
Fiscal Year
2013
Total Cost
$3,378,938
Indirect Cost
$785,725
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
Liang, Qianqian; Ju, Yawen; Chen, Yan et al. (2016) Lymphatic endothelial cells efferent to inflamed joints produce iNOS and inhibit lymphatic vessel contraction and drainage in TNF-induced arthritis in mice. Arthritis Res Ther 18:62
Sansone, Valeria A; Burge, James; McDermott, Michael P et al. (2016) Randomized, placebo-controlled trials of dichlorphenamide in periodic paralysis. Neurology 86:1408-16
Hamada, Daisuke; Maynard, Robert; Schott, Eric et al. (2016) Suppressive Effects of Insulin on Tumor Necrosis Factor-Dependent Early Osteoarthritic Changes Associated With Obesity and Type 2 Diabetes Mellitus. Arthritis Rheumatol 68:1392-402
Shum, Laura C; White, Noelle S; Mills, Bradley N et al. (2016) Energy Metabolism in Mesenchymal Stem Cells During Osteogenic Differentiation. Stem Cells Dev 25:114-22
Chan, Ellen S; Landay, Alan L; Brown, Todd T et al. (2016) Differential CD4+ cell count increase and CD4+ :  CD8+ ratio normalization with maraviroc compared with tenofovir. AIDS 30:2091-7
Lacy, Shannon H; Woeller, Collynn F; Thatcher, Thomas H et al. (2016) Human lung fibroblasts produce proresolving peroxisome proliferator-activated receptor-γ ligands in a cyclooxygenase-2-dependent manner. Am J Physiol Lung Cell Mol Physiol 311:L855-L867
Lu, Rong; Wu, Shaoping; Zhang, Yong-Guo et al. (2016) Salmonella Protein AvrA Activates the STAT3 Signaling Pathway in Colon Cancer. Neoplasia 18:307-16
Vanden Brink, Heidi; Willis, Amy D; Jarrett, Brittany Y et al. (2016) Sonographic markers of ovarian morphology, but not hirsutism indices, predict serum total testosterone in women with regular menstrual cycles. Fertil Steril 105:1322-1329.e1
Lannan, Katie L; Refaai, Majed A; Ture, Sara K et al. (2016) Resveratrol preserves the function of human platelets stored for transfusion. Br J Haematol 172:794-806
McIntosh, Scott; Pérez-Ramos, José; Demment, Margaret M et al. (2016) Development and Implementation of Culturally Tailored Offline Mobile Health Surveys. JMIR Public Health Surveill 2:e28

Showing the most recent 10 out of 193 publications