Culturally Deaf People Seeking Health Information Get Little Help from the Internet

Editor's Note: When used as a cultural label, the word "Deaf" is capitalized in this news release. When used as a term for an audiological condition it appears as a lower-case "d." People who are culturally Deaf are those who are deaf from birth or became so early in life.

BUFFALO, N.Y. -- The Internet is considered primarily a "visual" medium, as opposed to an aural one, and is thought by many to pose little barrier to non-hearing users. So hearing persons may be surprised to learn how difficult and dangerous the Internet can be for culturally Deaf persons seeking medical or health information.

Lance Rintamaki, PhD, a health communication researcher at the University at Buffalo, says that many culturally Deaf people also face dangers in face-to-face encounters with health care providers that they find frightening, and for good reason.

A new study he co-authored finds that the Internet -- the source of much medical information for most of us -- poses multiple communication barriers for the culturally Deaf, barriers that go far beyond inconvenience and can seriously compromise their health in ways virtually unknown to the hearing population.

"An Examination of Internet Use and Access to Health Information by the Deaf," by Rintamaki and Elizabeth Karras, PhD, postdoctoral fellow and assistant visiting professor in health communication, University of Illinois, Urbana-Champaign, is currently in press in the journal Health Communication.

The study is based on information gleaned from focus groups of deaf subjects, who discussed their difficulties operating in the health information and medical care spheres.

Rintamaki says, "The culturally Deaf (those who are deaf from birth or became so early in life) number only about 517,000 in the U.S. but already have poorer health than the general population. For many reasons they confront significant barriers in accessing the health, safety and other community supports they need to sustain health and well-being.

"People may assume the Internet would be a natural boon for anyone who is deaf," he says, "but while it is useful for those who became deaf or hard of hearing later in life -- those for whom English is a first language -- it is often not as useful for those who are culturally Deaf.

"This is because the culturally Deaf tend to 'speak' American Sign Language or ASL," Rintamaki says, "English is a second language to them. Many understand it poorly and read or write English at about a fourth grade level.

"This is well below the grade level at which information is presented on most health or medical websites," he says, "so they run into a literacy wall, and there are no online translation services currently available for ASL."

Rintamaki, an assistant professor in the UB Department of Communication in the College of Arts and Sciences, has conducted extensive research into the problems the deaf confront when seeking health care and information, and the ways in which they use or don't use the Internet to get either.

"Deaf people report that problematic person-to-person communication with medical professionals is a common experience and a source of fear for many of them," Rintamaki says, noting that health care providers cannot give them information verbally because the culturally Deaf do not 'speak' English, providers seldom 'speak' ASL and aural ASL translation services are often unavailable or simply disregarded.

"For these reasons, this makes it more challenging for culturally Deaf patients to communicate to clinicians what has happened to them, describe their symptoms, or clearly define pain," Rintamaki says, "they often understand only bits and pieces of the information given to them by doctors and others -- not enough to engage in discussion, ask meaningful questions, clarify misinformation or even know when the provider didn't understand them in the first place.

"This," he says, "puts them at serious risk of misdiagnosis and mistreatment, and many of the stories they tell of their experiences in this regard are harrowing."

Rintamaki says that, given the verbal issues here, we might expect that the Internet would offer something of a solution for the culturally Deaf, permitting them to search for information so they can just read it.

"We need to remember that, although non-English speaking immigrants to the U.S. can learn English, it's a different challenge for culturally Deaf people," he says, "and because they also write English at a low grade level, it is difficult for them to ask meaningful questions online about symptoms, treatments, risk, medications and so on.

"This so-called 'visual' medium, then, can prove to be a real challenge for culturally Deaf people who need it most," Rintamaki says. To address this, he and Karras are working on a project, still in early development, that could greatly increase the ability of the deaf to understand what is on the Internet.

"It is essential to Deaf people's health and well being and the development of good service delivery models that we develop a better understanding of how they manage health information," says Rintamaki.

"Although the current research examines the health care experiences of long-term members of deaf people, their experiences and health service needs remain poorly addressed," he says. "Our research suggests that it is particularly important to focus on the role of information and Internet technologies utilized by culturally Deaf people, given the capacities of such technologies to bolster their independence and participation in society."

The University at Buffalo is a premier research-intensive public university, a flagship institution in the State University of New York system and its largest and most comprehensive campus. UB's more than 28,000 students pursue their academic interests through more than 300 undergraduate, graduate and professional degree programs. Founded in 1846, the University at Buffalo is a member of the Association of American Universities.