March 10, 2000
Oakland, Ca. — Access to information in Spanish is everything to someone who has been diagnosed with a brain tumor. But until recently, that information has been unavailable.
"It's extremely important that patients with brain tumors, and their families, have the benefit of information in their native language," says Antonio DeSalles M.D., Ph.D., Professor of Neurosurgery at UCLA. "A brain tumor diagnosis and its prognosis is emotionally charged for both the patient and the family. Even a good translator cannot convey the cultural nuances and personal sentiments that an individual feels when he or she is confronting an illness," continues DeSalles, who says that 20 percent of his patients are Spanish speaking.
"The incidence of brain tumors is on the rise," says Rob Tufel, MSW, MPH, Director of Patient Services at the National Brain Tumor Foundation (NBTF), a non-profit organization in Oakland, California for brain tumor survivors and their families. "A brain tumor diagnosis requires immediate information and a tremendous amount of support. If cultural barriers arise, or the doctor and the patient do not speak the same language, questions and concerns often are not addressed. We believe it is crucial to provide support and contacts to all patients in a way that they can access, understand and use them."
Until last year, when NBTF published information in Spanish, there was little in the way of solid information for a Spanish speaker navigating a brain tumor prognosis. The publications were one small step toward accessing information. This year, NBTF stretched that step into a giant leap. On March 31-April 2, 2000, The 6th National Brain Tumor Conference, held in Los Angeles, will host a Spanish speaking component of the conference for patients and family members. It's the first such conference in the country.
"The conference is one way to reach out to a community that has been traditionally under served or may not have access to Spanish speaking health care professionals in their communities. But it's also a conduit to connect people, ask questions and communicate in Spanish," notes Tufel.
And to make the conference accessible to everyone, NBTF offers financial assistance with conference registration and hotel costs. "We want to try and reduce the barriers that would prevent patients and their families from attending this conference," Tufel adds. "We believe that the information patients receive at this conference helps them to better understand brain tumors and thereby make the best decisions regarding their treatment."
A number of workshops, treatment updates and health care professionals will present in Spanish. Doctor Antonio DeSalles, UCLA, will speak on planificación de tratamiento and Jorge Lazareff M.D., Director of Pediatric Neurosurgery and Pediatric Brain Tumor Program, UCLA, will speak on: que es un tumor cerebral. Karla M. Garcia MSW, LCSW, USC, will talk about los cambios en la familia with a brain tumor diagnosis.
In addition to adding a Spanish speaking portion to the conference, NBTF is busy developing "La Línea de Ayuda", a hotline which will match Spanish speaking patients and family members with volunteers who speak Spanish and can provide support over the telephone. If you are a Spanish speaker and would like to volunteer to speak to patients and caregivers across the country, or for more information on the conference, contact the NBTF. To register for the 6th National Brain Tumor Conference, please contact NBTF (www.braintumor.org), or the patient information hotline at 1-800-934-2873 (CURE).
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