NurseWeek: Cultural Connection: Hispanic women with breast cancer benefit from Spanish-language support groups

Cultural connection
Hispanic women with breast cancer benefit from Spanish-language support groups

By Toni Fitzgerald
January 29, 2001
Photo: Las Isabelas

Las Isabelas, a breast cancer support group for Hispanic women, offers members the opportunity to share their experiences with the disease in a culturally specific context. The group’s logo is shown at left.


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Margie Skyles, RN, knows it’s hard to believe now, but when the Rose Breast Imaging Center in Houston began its Spanish-language breast cancer support group in 1997, many thought it wouldn’t work.

"People said, ‘These are private women, it’s a private culture,’ " said Skyles, director of clinical services at Rose. " ‘It won’t work.’ "

Skyles and the women of Rose didn’t listen. They have called recently diagnosed women and five-year survivors, inviting them to share their feelings. They have sponsored biweekly guest speakers ranging from oncologists to sociologists and polled the women for their response. They have watched and listened as women shared not only the pain of undergoing a mastectomy, but the everyday frustrations of family and money troubles.

As the group has grown, so has its scope. Rose support group veterans call newly diagnosed patients and encourage them to attend a meeting. Participants discuss the advantages of chemotherapy vs. radiation and the cultural stigma of losing a breast.

The medical condition of breast cancer ties these women together. But Skyles thinks the common thread of language, in a country where many of the women do not use their native tongue outside the home, helps add another dimension of understanding.

"On the first level, they all speak the same language, even though they haven’t had the same upbringing," Skyles said. "It’s comforting to speak to women in your own language. There are a lot more women who can speak about the disease in their own language [as opposed to joining an English support group]."

Hispanic culture is compassionate, Skyles said. Women hug and kiss one another upon arriving at their biweekly session and offer physical and emotional support throughout.

"It’s a different culture," Skyles said. "Some of these women have been to other [non-Spanish-language] meetings, and they find that it’s a different culture on the whole. This is a really compassionate group of women, a compassionate culture."

Three years, 80 women and five countries worth of representation later, Skyles feels confident that the group is working.

"Someone told me the other day that she didn’t feel fulfilled if she missed a meeting," Skyles said. "It’s become pretty important."

Not a new model
The old, conventional wisdom seems to have been flawed. Cities from San Jose, Calif., to San Antonio have embraced the idea of Spanish-speaking support groups, and although it may be too early to gauge tangible results, the women involved agree with Skyles– these groups are working.

"With the increased [Hispanic] population, there is a real need for these groups," said Christina Frías, MS, RN, director of clinical education at VA North Texas Healthcare Systems.

"There is a difference between many of the groups run for Anglos, English-speaking women and Hispanics," said Sara Fainstein, Ph.D., a breast cancer survivor and facilitator of a Spanish-speaking cancer support group at The Wellness Community-South Bay Cities in California. "There are some differences you can’t explain. You may be able to understand these people in English, but there’s not the same cultural aspect, such as culturally what it’s like to lose a breast for Latina women."

Research shows women in cancer support groups survive longer than those who are not. (Stanford’s David Spiegel, MD, has done extensive research in this area.) But Hispanic women are less likely to join English-speaking groups, Fainstein said.

Hence the creation of Spanish-speaking support groups. It’s not a new model: African-American, lesbian and Asian women also have separate support groups.

"I think there had been a stigma on support groups [among Latinas]," said Guadalupe Palos, DrPH, MSW, RN, of the University of Texas M.D. Anderson Cancer Center in Houston. "That’s an area– disease– that Latinas think should be worked out in their own family, relying on family members for support."

"We’ve tried here [at UCSF] to run a support group for Russian women, but they never seem to go for the support group modality; it’s not something enough women gravitate to," said Deborah Hamolsky, MS, RN, of the University of California, San Francisco, Carol Franc Buck Breast Care Center. "But the same isn’t true for the Latina community. These women are giving each other a sense of community. It’s a good match in their culture."

Surviving together
Ana Lilia Gonzalez, a social worker for the San Jose support group Las Isabelas, said she can see the difference that support groups make in willingness to discuss cancer. She has seen women who at first were reluctant to talk in private about the disease, volunteer to appear on television programs as spokeswomen for Las Isabelas in the hopes of educating others.

Support groups are part outreach, part education and part grassroots effort. The women in the Rose group encourage family members to set mammogram appointments. Members of Las Isabelas show their communities that breast cancer can be treated.

"People learn from each other about life after breast cancer," Fainstein said. "These women tell other women. All this gets the [Latina] community to be more open about screening."

That’s the educational function of the groups. Although breast cancer rates for Hispanic women are relatively low, cases are diagnosed relatively late. That can skew survival rates, but many think early detection and more education could mean a world of difference.

"We’ve done a lot of things targeting Latina women for mammograms," Palos said. "That’s where nurses can be so helpful. They know about support groups and can help women become educated."

"Women in treatment tell their friends, ‘You have to do it,’" Gonzalez said of getting a mammogram. "You’re not going to die. Support groups help, they make people more aware."

These organizations also contain a therapy aspect. Círculo de Vida (Circle of Life), a San Francisco support group, addresses many issues within the breast cancer realm. Sexuality, family coping mechanisms and self-image come up frequently, as do issues more specific to Hispanic women.

La Familia
"Losing hair, for Latinas, culturally, losing hair is really significant," Círculo de Vida facilitator Carmen Ortiz, Ph.D., said. "The group is about more than language. A woman in one of our groups doesn’t speak Spanish very well, but she didn’t feel comfortable in an English group. She wanted a group that dealt with issues for Latina women."

It’s no coincidence that women in Ortiz’s group refer to it as La Familia, the family.

"[Groups] are having a big impact on survival rates," said Vilma Sosa, a group facilitator with Rose. "Most of the women coming here were uninsured and low income. The group is a big improvement factor. They’ve been through a lot. They come here and they don’t feel alone, they can talk to someone."

"Statistically speaking, not a lot of Latina women are diagnosed with breast cancer," said Rosalinda Benedet, MSN, NP, RN, clinical director of the Breast Cancer Recovery Program at California Pacific Medical Center. "But although it’s numerically small, you need support, even if it’s only five of you."

Groups in Salinas, Calif., and San Francisco are taking off, while others in San Mateo, Calif., and Dallas are on tap. Frías, who volunteers much of her time to educate Hispanic women about breast cancer, is excited at the progress, although everyone cautions there is a long way to go.

"It’s really important to have someone to talk to," Frías said. "It’s important to have that informal network."