The Deaf community experiences many of the same barriers to good health information and care as other minority communities. However, in comparison to other minority communities, very little research has examined health disparities in the Deaf community. Our long-established community-campus partnership has taken a number of steps to addressing the needs of the Deaf community, including training of health care providers in Deaf culture and American Sign Language (ASL), improving ASL interpreters'understanding of health-related information, and developing education programs in ASL to promote cancer prevention and early detection. Still lacking is a program to teach the Deaf community about cancer from the point of diagnosis through treatment and survivorship. In this project, our partnership will create a new and innovative education program called Coping with Cancer: A Program for the Deaf Community in American Sign Language. This will be a trilogy of cancer education videos in ASL with captioning and voiceover that will give members of the Deaf community and their loved ones access to the kind of information that hearing people have when the diagnostic, treatment and survivorship processes are underway for cancer. The three videos will focus on: 1) the diagnostic process and medical decision-making;2) common cancer treatments;and 3) coping with and managing cancer and maintaining quality of life. After the three videos are developed, each will be scientifically tested in a national randomized controlled trial with control group cross-over to assess each video's capacity to increase the knowledge Deaf persons have about cancer diagnosis, treatment, and management. The videos will also be tested to see if they positively change Deaf persons'confidence for dealing with the challenges presented by cancer, specifically measuring changes in knowledge, self-efficacy, and fatalism at baseline (pre- intervention), immediate post-intervention, and two-month follow-up. Deaf individuals in the experimental group in this study will see one of the three newly developed cancer videos. Control group members will initially see an exercise video and then will be invited to cross over into the experimental group to view one of the cancer videos. Baseline data collection will also include demographic, health status, health literacy, Deaf acculturation, and health locus of control measures to allow the researchers to determine whether personal characteristics of the participants moderate response to the education program. The two-month follow-up will determine whether gains are maintained over time. If this educational program is effective, there will be both immediate and long term public health benefits. The program will have the immediate effect of increasing knowledge and understanding of cancer diagnosis, treatment, and survivorship issues in the Deaf community nationwide. The programs that will be created can be accessed anywhere and without cost by the Deaf community and their loved ones, as well as healthcare professionals who serve the Deaf community. This will have the long term benefit of providing a set of educational tools that can continue to educate the community on an ongoing basis.

Public Health Relevance

The Deaf community experiences many of the same barriers to accessing reliable cancer information and care as other minority communities, but little research has addressed the health disparities evolving from these barriers. This project will create and scientifically test a new, innovative, free, and easily accessible education program called Coping with Cancer: A Program for the Deaf Community in American Sign Language to help address these disparities. The program is expected to have the immediate effect of increasing the nationwide Deaf community's knowledge and understanding of cancer diagnosis, treatment, and survivorship issues, plus the long term benefit of creating education, research, and clinical tools that will be permanently available to augment future efforts to continue reducing the Deaf community's health disparities.

Agency
National Institute of Health (NIH)
Institute
National Cancer Institute (NCI)
Type
Education Projects (R25)
Project #
5R25CA157430-02
Application #
8317552
Study Section
Special Emphasis Panel (ZCA1-RTRB-E (J1))
Program Officer
Korczak, Jeannette F
Project Start
2011-09-01
Project End
2016-08-31
Budget Start
2012-09-01
Budget End
2013-08-31
Support Year
2
Fiscal Year
2012
Total Cost
$317,053
Indirect Cost
$20,376
Name
University of California San Diego
Department
Surgery
Type
Schools of Medicine
DUNS #
804355790
City
La Jolla
State
CA
Country
United States
Zip Code
92093
Sacks, Loren; Nakaji, Melanie; Harry, Kadie M et al. (2013) Testicular cancer knowledge among deaf and hearing men. J Cancer Educ 28:503-8