A cancer diagnosis can trigger a sudden and intense investigation into how cancer works--how the disease forms, how it spreads, and how it can be stopped. Cancer patients turn to an ecosystem of care-including support groups, online medical information, and the advice of one’s health care team--for answers that may be critical to their survival.
Nevertheless, for many deaf cancer patients, their questions go unanswered, as they navigate a health-care system designed for the hearing.
A recently published study led by Barbara Berman, Ph.D., professor emerita at the University of California, Los Angeles (UCLA) Fielding School of Public Health and Jonsson Comprehensive Cancer Center describes the experiences and challenges of deaf breast cancer survivors. Philip Zazove, M.D., the George A. Dean, M.D. Chair of Family Medicine, served as a key expert consultant on the project.
“Knowledge about breast cancer is low in this population and many misconceptions about this disease persist,” said Berman. This observation motivated her to lead a community-academic research team in this study aimed at identifying and addressing the unmet breast cancer information needs of deaf women.
Persistent and profound gaps in cancer knowledge
In their earlier work, Berman and her colleagues identified gaps in cancer knowledge among deaf populations more generally. This follow-up study focused on the experiences and challenges of deaf cancer survivors, and found that, despite having multiple contacts with the health care system, “profound gaps” persisted in deaf cancer survivors’ knowledge of disease diagnosis, treatment, and recovery.
When interviewed, one breast cancer survivor did not know what cancer was. Others in the study had uncertain or inaccurate understandings of their medications, procedures, and the risk factors that contribute to the disease.
These basic knowledge gaps point to breakdowns that frequently occur in communication between deaf patients and their health care providers. Participants in the study described clinical settings in which providers would not communicate with them or they relied on note taking or lip reading to communicate, despite the patient’s preference for American Sign Language (ASL) and ASL interpreters.
Deaf patients got the sense that providers “didn’t want to deal with the deaf” or would not answer their questions “because I was deaf and they didn’t communicate with me.”
Adequate interpreter services were not always available or provided. Two participants noted that they were offered interpreter services only after mentioning the legal requirement for adequate language accommodations, such as provisions in the Americans with Disabilities Act (ADA). It was also common for deaf patients in the study to use family members or friends as ad hoc interpreters.
Zazove notes, “Deaf cancer patients in particular, but also deaf patients, are a high-risk population for poor health care utilization and outcomes.” He adds, “This research lays the groundwork for possible interventions to improve health care for people with hearing loss of all levels.”
“Provision of linguistically and culturally adequate health information and services is crucial to the health and well-being of this population,” said Berman, who has worked with the deaf community for nearly twenty years by developing research-based educational interventions for deaf populations.
The current study was conducted in partnership with the Greater Los Angeles Agency on Deafness, Inc. (GLAD), and DeafDOC.org.
Designing a breast cancer education program for deaf women
Berman is currently working with her collaborators to disseminate the comprehensive breast cancer educational program “Signs of Awareness, A Visual Guide to Breast Cancer for Deaf and Hard of Hearing Women” developed as part of this research. The video can be found for free on YouTube at https://www.youtube.com/playlist?list=PL-kscuYBpkqFQtkY0KANt7gTnyp13zdeG. And the DVD image and companion brochure will soon be available on the UCLA site.
Dr. Zazove’s work, as a leading deaf physician, has included extensive research and advocacy for improving health care for deaf populations at a national level. Most recently, Zazove has served on a physical medicine and rehabilitation (PMR) academy committee to evaluate technical standards in U.S. medical schools. Work from the PMR academy will be presented in an October 2017 American Academy of Medical Colleges (AAMC) report on school policy provisions for doctors and learners with disabilities. Dr. Zazove has also been invited to share his intervention research on early hearing loss detection (EAR-PC) with the National Academy of Medicine’s Task Force on Hearing Loss. Zazove collaborates with other disability health researchers and clinicians in the department of family medicine, including Michael M. McKee, M.D., M.P.H., Justine P. Wu, M.D., M.P.H., Michael D. Fetters, M.D., M.P.H., M.A., Elham Mahmoudi, Ph.D., Feranmi Okanlami and Lisa Meeks on several disability health projects and initiatives.
The study was published in the Journal of Health Care for the Poor and Underserved in August 2017. Co-authors on the paper include Angela M. Jo, associate professor of family and community medicine at the University Of New Mexico; William G. Cumberland professor of biostatistics at the Fielding School of Public Health at UCLA; Heidi Booth, Director Of Health Education/Services at the Greater Los Angeles Agency On Deafness Inc. (GLAD); Alicia A. Wolfson, former Field Coordinator for the Greater Los Angeles Agency On Deafness, Inc. (GLAD); Carolyn Stern, family physician, Founder/ Partner of Deafdoc.org, and Medical Director of the Rochester School For The Deaf; Gary Kaufman, Medical Director of Sinai Deaf Health at Mount Sinai Health System; Georgia Robins Sadler, professor of surgery at UCSD Moores Cancer Center; and Roshan Bastani, professor of health policy and management at the UCLA Fielding School of Public Health.
Article Citation: Berman BA, Jo AM, Cumberland WG, Booth H, Wolfson AA, Stern C, Zazove P, Kaufman, G, Sadler GR, Bastani R. D/deaf Breast Cancer Survivors: Their Experiences and Knowledge. Journal of Health Care for the Poor and Underserved. 2017 Aug; 28(3):1165-1190. doi: 10.1353/hpu.2017.0104.
Browse the latest department research on disability health.