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    Research Grants Awarded

    A Breast Cancer Education Program for Deaf Women

    Study Section:
    Population Specific

    Scientific Abstract:
    Background. The Deaf community is unique, with social, cultural and linguistic patterns that isolate it from the hearing world. Frequently poor, with limited education and literacy, on average adults read on a 4th grade level. The Deaf have inadequate communication with physicians, poorer preventive health behaviors, lower levels of health knowledge, and fears grounded in incomplete and incorrect information. Access to services is limited, including to breast cancer education programs that have made an enormous difference in the lives of hearing women. Tailored programs for this community, built on a strong research foundation, are urgently needed. Specific Aims. Using findings from a pilot study conducted in collaboration with the community (Greater Los Angeles Agency on Deafness-GLAD) we will: (1) produce a tailored breast cancer education program for Deaf women; (2) assess program impact on the knowledge/perceptions of 40 women, 40+ years old including at least 5 breast cancer survivors, from varying race/ethnic/educational backgrounds; (3) disseminate study findings to this community and professionals serving the Deaf. Study Design/Research Questions. Program delivery will occur in a small group discussion format involving DVD/video and written materials. A sign language survey will be administered prior to and immediately following program delivery, and subjects will be recontacted at 6-month follow-up to answer the following questions: (a) In comparison to pre-intervention, do participants immediately post-intervention have greater knowledge of breast cancer risk factors/primary prevention; steps to protect breast health, such as reasons for routine screening, breast cancer detection/diagnosis/treatment strategies; ways to overcome communication barriers with health care providers, and to join the battle against this disease? (b) At 6-month follow-up is this knowledge retained? Have women taken steps – screening, physician communication, diet, community involvement - relevant to breast health? (c) What program changes, if any, should be made? Potential Outcomes/Benefits. If our program shows promise we will seek to explore its long-term impact on key outcomes in a larger experimental study in the future. In developing and testing a much needed educational program for Deaf women our research can have a powerful impact on the breast cancer knowledge, awareness, and protective behaviors of this understudied and underserved minority population.

    Lay Abstract:
    The Deaf are a unique minority community. Cut off from the hearing world by culture and language, the Deaf are often poor, have limited education, and on average adults read at a fourth grade level. Often the Deaf have poor communication with doctors, less health knowledge, poorer health practices, and are fearful because of incomplete and incorrect health information. Services, including breast cancer programs that have made a great difference in the lives of hearing women, are not accessible to this population. Deaf-friendly breast health programs, based on research conducted by and with this underserved community, are badly needed. Working with the Deaf community (Greater Los Angeles Agency on Deafness-GLAD) we have collected valuable information about breast health needs of Deaf women. In this study we will use what we learned to produce and evaluate a tailored educational program among 40 Deaf women 40+ years old, including at least 5 breast cancer survivors, from varying race, ethnic and educational backgrounds. We will deliver the program in a small group discussion format involving DVD/video and written materials. A sign language survey will be administered prior to and immediately following program delivery so that we can learn about the program’s effect on knowledge of cancer risk factors and lifestyle behaviors that effect breast health; steps that women can take to protect themselves, relating to screening, detection, diagnosis and treatment; and ways to improve communication with health care providers about breast cancer, obtain information, and become active in the fight against this disease. Six months later we will re-contact each woman to see what she remembers from the program and what steps, if any, she has taken since receiving the program, such as being screened, talking with her doctor, or taking part in a community event relating to breast cancer. We will use established communication channels in the Deaf community and among health professionals to distribute our findings. This study moves us closer to developing a much needed breast cancer educational program for Deaf women. If our program shows promise we will seek to test its long-term impact in a larger experimental study in the future. We believe that the research we propose can play an important role in increasing what Deaf women, a population that has been left behind, know and do to protect themselves and others when it comes to breast cancer and breast health.