Breast Cancer Prevention and Control Among Deaf Women
Creators: name: University Of California Office Of The President
Publisher: name: University of California Office of the President
publisherIdentifier: https://ror.org/00dmfq477
publisherIdentifierScheme: ROR
Year: 2024

description: Introduction to the research topic: The Deaf and Hard-of-Hearing (Deaf/HH) are a unique minority community. Cut off from the hearing world by culture and language, the Deaf/HH are often poor, have limited education, and, on average, adults read at a 5th grade level. Often the Deaf/HH have poor communication with doctors, less health knowledge, poorer health practices, and are fearful due to incomplete and incorrect health information. Services, including breast cancer programs and messages that make a great difference in the lives of hearing women, are not accessible to this population. There are virtually no tailored breast health and breast cancer programs for Deaf/HH women, in part due to lack of the kind of research that has been critical in developing effective programs for hearing women. Deaf-friendly breast health programs, based on research conducted by and with this underserved community, are badly needed.
 
 
 
 
 
 
 
 Research hypotheses: We seek to develop, evaluate, and distribute a tailored breast health educational program for Deaf/HH women. In our study, women who have had a screening mammogram in the prior 12 months will be classified as “adherent to ACS guidelines.” We will test the following primary hypothesis: change in the proportion of adherent women between baseline and follow-up will be greater among women in the intervention (who receive our program) than the control group. As secondary questions we will look at the program’s impact on breast cancer knowledge, communication with physicians, clinical breast examination, and exercise. 
 
 
 
 
 
 
 
 General methodology:
 
 As part of an eight-year partnership between the Greater Los Angeles Agency on Deafness (GLAD) and UCLA we completed a pilot CBCRP-CRC study including in-depth signed interviews among 68 Deaf/HH women relating to breast health. Based on our findings, we now want to develop and evaluate a tailored breast health program for Deaf/HH women featuring small group workshop sessions, signed/captioned video/DVD, written materials, and group discussion. We will recruit into a “Health and Safety Program for Deaf/HH Women” 180 Deaf/HH women 40+ years old, with high school or less education, from varying race/ethnic groups. We will compare results for 90 women randomly assigned to the breast health sessions (experimental) to results for 90 women taking part in sessions focused on household safety (control). All women will complete the same “Health and Safety” questionnaire before receiving their program (baseline) and 12 months later (follow-up) to assess change in screening practices and other outcomes, and will receive a copy of the breast cancer materials at the study’s end. We will widely distribute our results to Deaf/HH women and to organizations and individuals serving the Deaf Community.
 
 
 
 
 
 
 
 Innovative elements of the project: This research is unique. We pair a leading Deaf Community agency (GLAD) and experienced cancer control researchers (UCLA) in a first-ever study to develop a comprehensive, Deaf-friendly breast health education program. We test the program by comparing change in screening and other outcomes using a state-of-the-art design (randomized controlled trial) not previously used to study breast health in this population. We focus on Deaf/HH women with less education which has never been done before in any breast health research. Our team, including Community Advisory Committee and focus group members, and hearing and Deaf Investigators and Consultants, including two of the few Deaf physicians in the nation, brings valuable cultural competence and expertise to the study. We build on findings from first ever in-depth pilot interviews among Deaf/HH women. This innovative research addresses urgent unmet needs of Deaf/HH women who have been left behind in the fight against breast cancer. By testing a comprehensive approach to breast health education, it can also contribute to the understanding of how to reduce disparities that threaten the lives of other underserved less educated and minority women as well.
 
 
 
 
 
 
 
 Community involvement: GLAD and the Deaf Community have been involved in every aspect of the pilot study, this proposal’s development, and will continue as equal partners in the proposed study, guiding every phase of the study including: program content and procedures, recruitment, data collection, staffing and training, budget, and Community Advisory Committee, focus group and Consultant participation. As throughout our partnership we will include grassroots community members in all phases of our work. Our pilot included 68 Deaf/HH women, 180 Deaf/HH women will take part in this study. Our Community Advisory Committee and focus group members will be part of all research decisions, interpret findings, and will help decide how to best disseminate results so that they are of greatest value to the Deaf Community in California and throughout the nation.
 
 
 
 
 
 
 
 
 
 
 
 Publications: 
 
 
 
 D/deaf Breast Cancer Survivors: Their Experiences and Knowledge