Breast Cancer Education for Deaf and Hard-of-Hearing Women

Institution: University of California, Los Angeles
Investigator(s): Barbara Berman, Ph.D. - Heidi Booth, B.S. -
Award Cycle: 2006 (Cycle 12) Grant #: 12BB-1000 Award: $295,494
Award Type: CRC Full Research Award
Research Priorities
Community Impact of Breast Cancer>Sociocultural, Behavioral, and Psychological Issues: the human side

This is a collaboration with: 12BB-1001 -

Initial Award Abstract (2006)
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.

D/deaf Breast Cancer Survivors: Their Experiences and Knowledge

Final Report (2008)
We have taken critical steps towards achieving our research goal: to develop and test a culturally and linguistically tailored breast health and breast cancer educational program for deaf and hard of hearing (deaf/hh) women, an underserved, and understudied population.

(Aim 1) Produce a comprehensive, multi-media tailored breast cancer program for deaf/hh women.
We obtained UCLA OPHS (IRB) Administrative Approval; and are finalizing all elements of the tailored intervention (DVD, tailored companion brochure) through the collaborative efforts of our research team, expert consultants and Community Advisory Committee members.

(Aim 2). Evaluate the effect of the program on: breast cancer screening behavior, knowledge and awareness of breast health and breast cancer, and on lifestyle behaviors and physician communication relating to breast health through an RCT that includes 200 deaf/hh women 40+ years old with high school or less education from diverse race/ethnic groups.

We have identified all agencies that will serve as recruitment sites and host group sessions; finalized all recruitment materials, strategies, and survey instruments; and revised our protocol to include a control program that focuses on lifestyle practices and their relationship to cancer. We include 40 women (including 20 breast cancer survivors) in a companion demonstration project funded by the Susan G. Komen Breast Cancer Foundation.

(Aim 3). Dissemination of study findings was initiated through presentations at professional meetings and will continue during year 03 of the study and our no-cost extension period through professional and community meetings, and publications.

To achieve related goals, receipt of funding from two agencies, the CBCRP and the Susan G. Komen Breast Cancer Foundation, required that we revisit, expand and reorganize our research plan, consult with and receive approval from both agencies, and delay program startup. Through community input our initial plans for tailored intervention program (DVD, brochure) were also substantially revised and expanded. The cultural and language requirements of the population required an extremely time-consuming iterative process to ensuring the medical accuracy of translated (ASL) information in the intervention and in survey instruments. This process significantly delaying progress in the current study year. Excellent progress is now being made to achieving all study aims and goals. We are meeting all challenges in this work, including those relating to meeting the linguistic and cultural requirements of this population, through close, constant collaboration among members of the academic-community research team, community members, and our participating consultants.

Symposium Abstract (2007)
Deaf and hard-of-hearing (deafh/hh) women are invisible in the research that has shaped breast health and breast cancer educational interventions There exists cultural, social, and communication barriers, which prevent d/hh women from accessing public information about breast health and breast cancer We describe here a program of research, unique in the nation, funded by California Breast Cancer Research Program (CBCRP) and by the Susan G. Komen Breast Cancer Foundation, focused on developing and testing an effective program tailored for this population. The goals of our research are to: (1) produce a comprehensive multi-media tailored breast cancer program for deaf/hh women that spans to elements of the breast cancer control continuum and that focuses on empowering deaf/hh women to take the steps needed to ensure that they receive much needed breast health and breast cancer information and services; (2) evaluate the effect of the program on: breast cancer screening behavior, knowledge and awareness of breast health and breast cancer, and on lifestyle behaviors and physician communication relating to breast health, through a demonstration project and a randomized controlled trial (RCT); and (3) disseminate study findings to the deaf/hh community, health care providers, and others serving the deaf/hh throughout California and the nation.

We report here on the community-academic partnership forged to conduct this research which includes the Greater Los Angeles Agency on Deafness (GLAD), the Division of Cancer Prevention and Control Research (UCLA), an Advisory Committee of deaf/hh community members, and expert consultants; including two of the nation’s few Deaf physicians. We describe: why this program of research is needed; the steps taken to craft culturally and linguistically appropriate program content to serve a general population of deaf/hh women and those who are breast cancer survivors; elements of the intervention (small group sessions, signed/captioned/voice over DVD, written materials); recruitment strategies; data collection instrumentation and procedures; and our assessment plan which involves 240 deaf/hh women 40+ years of age (at least 200 women with a high school or less education, and 20 deaf/hh breast cancer survivors). We examine cultural considerations relevant to conducting research in this underserved and understudied population, consider challenges faced in developing and implementing our study, and describe the steps taken to address potential barriers to this much needed research.

A Breast Cancer Education Program for D/deaf Women
Periodical:American Annals of the Deaf
Index Medicus:
Authors: Cumberland WG, Berman BA, Zazove P, et al.
Yr: 2018 Vol: 163 Nbr: 2 Abs: Pg:90-115