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Students learn to work with deaf subjects
Hearing impaired often unintentionally excluded
Efforts to improve clinical trial participation among medically underserved populations often overlook one group in particular, say some cancer researchers in California.
Deaf and hearing-impaired persons face significant barriers to obtaining quality health care and are often afraid to participate as subjects in trials of cutting edge therapies because of an overall distrust of the health system, says Georgia Robins Sadler, BSN, MBA, PhD, clinical professor of surgery at the University of California-San Diego (UCSD) and associate director of UCSD Cancer Center’s Community Outreach Program.
"One of the reasons we spend so much time educating health professionals and the public is to try to help [historically disadvantaged] communities to understand that no participation is really no voice, and no say in how treatments are developed and how people access them," Sadler says. "So, someone has to step up to the plate. Obviously, we are not saying everyone should do every study, but keep your eyes and ears open and don’t have a knee-jerk rejection response. Don’t let the consent document frighten you."
Most health care professionals believe that hearing-impaired patients are just like their hearing counterparts. But they face many obstacles to participating in health decisions and in participating in research.
For example, English is essentially a second language for many deaf people, Sadler says. They may learn American Sign Language (ASL), the dominant sign language in this country, to communicate with other people, but that language has no written counterpart. Most deaf people learn standard English as a second language with no auditory reinforcement, she adds. As a result, many hearing-impaired patients read English at only about a fourth-grade level.
Informed consent documents, typically written at a sixth-grade level or above, will discourage participation by many in that population, she says.
And many members of the deaf and hearing-impaired communities already have a tenuous relationship with the health care system.
Surveys of the deaf and hard of hearing community (DHHC) indicate many have a distrust of physicians. Medical students do not typically learn cultural sensitivity for the DHHC the way that they do for other populations, nor do they learn how to communicate effectively with and without the use of interpreters or even when to use interpreters.
With cancer a leading cause of death in America, the 20 million members of the DHHC thus experience more limited access to basic care, cancer information and, in the case of clinical trials, cutting-edge treatments.
To help improve health care for the DHHC and to reduce the disparities in access to new treatments, the National Cancer Institute (NCI) has funded the ASL, Deaf Culture, and Cancer Program at the UCSD School of Medicine.
The program’s goal is to prepare medical students to become clinical leaders dedicated to improving the community’s access to health care, cancer prevention, and cancer control information.
Students attend six quarters of classes, participate in deaf socials, and offer a yearlong health promotion seminar series in ASL for the deaf and hard of hearing. Each student is assigned to an ASL interpreter-mentor who reinforces and hones the student’s skills.
The students also spend one summer in Gallaudet University’s residential ASL/deaf culture immersion program, which helps students gain experience with deaf language and culture, while helping members of the DHHC learn that they can proactively establish good working relationships with doctors.
Improving communication of health information to the deaf and hearing impaired is important both for clinical investigators and physicians treating individual patients, Sadler continues.
Marketing experts believe that between seven and 21 messages must be received in rapid succession before a message will be assimilated. Yet, most of the methods traditionally used to communicate health information to the hearing community are largely inaccessible to the deaf.
TV and radio advertisements are obviously not as useful and detailed patient information in print may also be difficult for the DHHC to understand.
One of the program’s initiatives is developing alternative health message delivery strategies. And, at the same time, testing of these message strategies has enabled some members of the San Diego DHHC to gain experience with clinical research.
Sadler has designed small studies that survey the opinions and experience of different groups to find out what cancer prevention messages they have been exposed to and how effective these prevention messages have been.
Groups of deaf and hard of hearing people have helped researchers validate the survey tools for the deaf community. And participation in the small opinion studies has paved the way for involvement of hearing-impaired patients in clinical studies, she points out.
"In that way, they are exposed to the basic elements of clinical research and trial design," she says. "If they later decide to participate in a larger trial, they will know what the consent form will look like, what its purpose is, etc."
The task remains for investigators to better understand hearing-impaired patients and what techniques can improve their understanding of and willingness to participate in a clinical trial.
"If a deaf patient is referred to an investigator, then that investigator has to be prepared to have a conversation with that person," Sadler notes. "That may mean including the services of an interpreter and knowing how to interact with the patient and the interpreter."
There are a lot of cultural barriers to communication in addition to physical barriers, she adds.
Sadler says that many physicians don’t realize that, for hearing impaired patients, they need to be sure that they face the patient the entire time they are speaking and look directly at them.
Or that when using an interpreter, the physician should speak to the patient, but realize that the patient needs to watch the interpreter in order to understand what has been said.
"Often the physician will end up just speaking directly to the interpreter, which can be seen as dismissive of the patient," she says. "You need to look at the person, even if they are not always looking at you."
Sadler’s group has published different articles on the health information needs of the deaf and hearing-impaired. She hopes that this information can, in small ways, help other physicians do what the medical students in the deaf culture program are learning to do — provide better information, care, and access to treatments for members of a group that often is ignored.
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