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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 7^th 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 accessible way."

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 ddguns@aol.com.

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.