Breast Cancer Prevention and Control Among Deaf Women

Institution: University of California, Los Angeles
Investigator(s): Barbara  Berman , Ph.D. - Heidi  Booth , B.S. -
Award Cycle: 2001 (Cycle VII) Grant #: 7AB-1000 Award: $110,015
Award Type: CRC Pilot Award
Research Priorities
Sociocultural, Behavioral, and Psychological Issues>Sociocultural, Behavioral, and Psychological Issues: the human side



Initial Award Abstract (2001)
Programs and messages relating to breast cancer and breast health are often inaccessible and inadequate for women who are deaf or hard-of-hearing (deaf/hh); there are virtually no programs tailored to the cultural, social and communication requirements of this population. There has been little research of the kind that has been critical in developing effective interventions for hearing women. We know nothing about the understanding deaf/hh women have--accurate or inaccurate--of risk factors for breast cancer, their personal breast cancer risk, and screening guidelines; breast health-related lifestyle and health practices, and, for breast cancer survivors, awareness of treatment and recovery issues. Nor do we have an understanding of the demographic, psychosocial, environmental and cultural factors that influence the views or behavior of deaf women with respect to breast health.

Building on a 5-year research partnership between the Greater Los Angeles Council on Deafness, Inc., (GLAD) and the Division of Cancer Prevention and Control Research, Jonsson Comprehensive Cancer Center at UCLA, our goal is to develop effective breast health-related programming for this underserved and understudied population and to disseminate what we learn throughout the Deaf Community. In this pilot study, we propose to conduct the first-ever in-depth exploratory research to obtain the information we need to craft such a program. We will use the signed languages of the Deaf to interview 70 deaf/hh women 40+ years of age to learn about their knowledge, perceptions, and practices relevant to breast cancer and breast health; the factors that affect these perceptions and behaviors; and their views and preferences regarding programming.

Ten of these women will be breast cancer survivors so that we can also learn about the experiences deaf/hh women have when it comes to detection, treatment and survivorship. We will recruit our subjects through GLAD, including women deafened late and early in life, and those who have been deaf life-long. Our experienced, multi-disciplinary community-research team will draw on what little information is available from past research in the Deaf community, and on established methods, theories, and research among hearing women, as we conduct our study, interpret our results, and plan our next steps. The procedures we will use will allow us to overcome formidable barriers to research and data collection among the Deaf. We will pay special attention to issues of privacy and cultural sensitivity in the Community.

Our primary focus is the CBCRP's breast cancer prevention Priority Area; our research takes an important step towards ensuring that deaf/hh women share in the gains that have been made among hearing women it comes to breast cancer and breast health. By including breast cancer survivors in our study we will also be starting to examine, for the first time, issues relevant to a second CBCRP Priority area: the socio-cultural behavioral and psychological issues relevant ot breast cancer among Deaf women.

Meeting all CBCRP requirements for an effective Community-Research Collaboration, this study allows us to move toward the goal of excellent, tailored programming for deaf/hh women, a population that has been overlooked in the past. In so doing, our research addresses important research questions, promises great potential benefit for this community, and makes an important contribution to the battle against breast cancer, a battle that can only be won when we reach all women, state and nationwide.


Final Report (2005)
Programs and messages relating to breast cancer and breast health are often inaccessible and inadequate for women who are deaf or hard-of-hearing (deaf/hh). There are virtually no programs tailored to the cultural, social and communication requirements of this unique population. Building on a seven-year research partnership between the Greater Los Angeles Council on Deafness, Inc. (GLAD) and the Division of Cancer Prevention and Control Research, UCLA School of Public Health and Jonsson Comprehensive Cancer Center (UCLA) this BCRP CRC Pilot Project is aimed at developing effective breast health-related programming for this underserved and understudied population, and to disseminate what we learn throughout the Deaf Community. To achieve this end we are conducting first-ever in-depth exploratory research to obtain the information we need to craft such a program.

We used the signed languages of the Deaf to interview 69 deaf women 40+ years of age to learn about their knowledge, perception and practices relevant to breast cancer/breast health; the factors that affect these perceptions and behaviors; and their views and preferences with respect to breast health programming (Aim 1). Seven of these women are breast cancer survivors so that we can also learn about the experiences deaf/hh women have when it comes to detection, treatment, and survivorship (Aim 2). Subjects were recruited through GLAD, including women deafened late and early in life, and those who have been deaf life-long. We are paying special attention to issues of privacy and cultural sensitivity in the Community in all aspect of the research; the procedures we are using allow us to overcome formidable barriers to research and data collection among the Deaf. All interviews have been completed, videotaped and transcribed. Data analysis is in progress.

Once all data have been analyzed we will invite 6-8 of the women we interviewed to help us draft plans for a program we will test as part of a CRC Full Research Award. Our experienced, multi-disciplinary, community-research team will draw on what little information is available from past research in the Deaf community, and on established methods, theories, and research among hearing women, as we interpret our results, and plan our next steps. Meeting all BCRP requirements for an effective Community-Research Collaboration is allowing us to move towards the goal of excellent, tailored programming for deaf/hh women, a population that has been overlooked in the past. In so doing, our research addresses significant research questions, promises great potential benefit for the Deaf Community, and makes a valuable contribution to the battle against breast cancer, a battle that we will win only when we reach all women, state and nationwide.