Feb. 18, 2000
UCSD CANCER CENTER WORKS TO BRING
HEALTH INFORMATION TO DEAF COMMUNITY
New study results show barriers, provide guidelines
When it comes to accessing health information,
members of the Deaf community face multiple hurdles.
In an effort to reach the Deaf community with cancer education programs,
researchers with UCSD Cancer Center conducted a study to identify barriers and
develop ways to overcome them.
The study was done in collaboration with Deaf Community
Services of San Diego, the UCSD Department of Communication and Gallaudet
University. The San Diego Affiliate
Chapter of the Susan G. Komen Breast Cancer Foundation and the Alliance
Healthcare Foundation funded the study. Results
were presented last week during the Intercultural Cancer Council’s 7th
Biennial Symposium in Washington, D.C.
In the study of 103 deaf women, aged 19 to 88 years, the
researchers conducted several breast cancer educational sessions with 5 to 12
women per session. During the
sessions participants completed a baseline survey, watched a breast cancer
education program presented through American Sign Language (ASL), and then
completed a follow-up survey.
Study participants reported that the biggest problems in
accessing health information involve lack of an interpreter or, conversely, lack
of privacy with an interpreter; health professionals who are inexperienced with
deaf patients; impatient health professionals; lack of health education
workshops for the Deaf community; technical medical terms; and lack of
closed-caption educational TV and videos.
“We found that many patients are uncomfortable discussing
personal health issues with an interpreter present,” said Georgia Robins
Sadler, Ph.D., Associate Director for Outreach with UCSD Cancer Center and
principal investigator on the study. “On
the other hand, without an interpreter it is difficult for deaf people to
understand hearing health professionals. This awkwardness leads to abbreviated conversation or, more
often, to abandonment of the effort by either one or both parties.”
Sadler added that having more health care providers
proficient in ASL would help to reduce this barrier.
The researchers then looked at levels of adherence to
breast health practices, such as breast self-examination, clinical breast exams
and mammography – simple steps known to detect cancer at its earliest stages,
when it is curable.
“Very few of the women practice these lifesaving
techniques,” said Sadler, who is also an associate professor of surgery with
UCSD School of Medicine. “Yet
when we presented this information, the participants were very receptive.
It’s a simple matter of presenting important information in an
The researchers took an existing breast health education
program, developed as part of earlier UCSD studies with African-American and
Pacific Asian women, and modified it by incorporating more visual aids and
presenting the material through ASL.
Tom Galey, director of Deaf Community Services of San
Diego, Inc., said the study has important implications for the improved health
of deaf people everywhere.
“This study is significant because it reveals the reasons
why deaf women historically have been reluctant to access health information,
and it provides guidelines on how to overcome this reluctance,” he said.
“As a result of this study, we hope to see more efforts to educate the
Deaf community across the nation through community presentations in their
natural language, which is ASL.”
Sadler and colleagues began evaluating the need for
developing this outreach program in 1997 in a pilot study funded by the UCSD
Academic Senate. Based on the
newest findings, the Alliance Healthcare Foundation has awarded Sadler a grant
to produce a train-the-trainers video, presented in sign language, so that other
communities can start their own breast health education programs for deaf women.
She is also looking to expand the program to include prostate cancer
education for deaf men.
For information about hosting an in-home breast education
program or attending one offered elsewhere, contact the UCSD Cancer Center
Outreach Office, voice line (858) 534-7611, TDD (858) 822-3108, or email firstname.lastname@example.org.
Founded in 1979, UCSD Cancer Center is the only cancer center in San Diego and Imperial counties designated for both research and clinical care by the National Cancer Institute.
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Media contact: Nancy Stringer