Breast Cancer and Breast Health Education and Research among Deaf/HH Women

Responding to the unmet needs of Deaf and Hard-of-Hearing (Deaf/HH) women, we report here on a first ever program of research targeting development and testing of a tailored, comprehensive breast health/breast cancer educational program, funded by the California Breast Cancer Research Program and the Susan G. Komen Foundation. We describe the steps taken through a Deaf Community-academic research partnership to craft a program that features linguistically and socio-culturally appropriate small group workshop session, videos, and written materials. We explain the program content which spans the elements of the breast cancer control continuum from early detection through survivorship; focuses on economic, linguistic and socio-cultural barriers to adequate breast health information and services in clinical and other settings and strategies to improve access and address these issues; and which explores ways in which to increase participation by Deaf/HH women in the breast cancer advocacy movement. Finally, we explain our two-phase research approach, including a demonstration project and a Randomized Controlled Trial (RCT) targeting breast cancer related knowledge, attitudes and practices. We describe the process by which our Deaf-community participatory research is conducted; participant recruitment, participation and follow-up achieved, with special emphasis on inclusion of Deaf/HH breast cancer survivors and women with lower levels of education; and the challenges met in our efforts to address the health disparities of this unique underserved and understudied population.