Latinas break glass ceiling in cancer research

When Alma Torres-Nguyen, Community Outreach Coordinator for Kaweah Delta Health Care District (KDHCD), heard there was a potential research project involving rural Latinas she didn’t just get excited, she participated in securing the funding.

What piqued her interest was the fact that the study involved Central Valley Latinas with limited English, an underserved group in terms of access to medical and mental health resources.

The research project, called New Dawn, conducted in coordination with the University of California San Francisco (UCSF), was a three-year study that sought to improve the quality of life among Spanish-speaking women with breast cancer in rural communities. The project also set out to answer the question: If Latinas receive counseling about their breast cancer diagnosis, does it improve health outcomes?

The grant for New Dawn was approved and KDHD was chosen as one of three sites in California. Funding came mostly from the California Breast Cancer Research Program and Torres-Nguyen was appointed the project director for the KDHCD site.

The two other sites were Salinas/Monterey and Imperial Valley, both having a large population of monolingual Latinas.

New Dawn was a two-pronged project. One part was to provide information and mental health services to Latinas with breast cancer living in rural communities.

The other prong was to do
research and analyze the health benefits of counseling to an underserved community. The research also included collecting biomedical specimens of hair and saliva to measure their cortisol levels, a stress hormone, in the patients.

Skeptics reviewing the grant proposal initially said the project coordinators could never get such a vulnerable community to stick with a long-term project. They were also skeptical about lay people being able to effectively provide counseling typically administered by professionals in specialized cancer clinics.

The skeptics were proved wrong.

The participants did stick with the study for the duration of the program and the lay counselors did effectively learn to administer the needed therapy to the patients.

Preliminary results of New Dawn were presented at a press conference August 8 at Kaweah Delta. The final results will be ready in about five months and a priority of the primary investigators is to share the finding with the actual participants who made the research possible.

The Premise

New Dawn recruited 150 Latinas in the three research sites with 75 in the research group and 75 in the control group. After six months, at the end of the study, the control group was offered the same counseling as the research group and many accepted.

54 Latinas were recruited in Tulare, Kings and Fresno Counties with non-metastatic breast cancer and more than half of all the participants in the study had Medi-Cal, California’s version of Medicaid, or no insurance.

The project focused on Latinas not only because they are an underserved demographic, but also for cultural reasons. Ana Maria Napoles, the Primary Investigator of the study, explained that many Latinas do not understand their diagnosis and consider it a death sentence. In addition, they don’t know how to talk about their illness with their spouses or children.

Because of the language barrier and cultural reasons they have no one to talk to about breast cancer and don’t have the vocabulary or assertiveness to ask their doctors specific questions about their prognosis or treatment. As a result, the patients did not understand what their treatment would be, how to manage their symptoms, or understand possible side effects of their treatment.

Napoles said Latinas experience a disproportionate amount of depression, stress, pain, and anxiety related to breast cancer compared to their White counterparts and those factors could affect their health outcomes.

New Dawn sought to improve the patients’ quality of life by offering them a companera, or companion, to provide counseling and education. The companeras were breast cancer survivors themselves who could relate to what the patients were going through. They were trained, given the materials and an agenda to follow, and had an advisor while counseling the patients.

The companera went to the patient’s home once a week for 10 weeks. They educated them about cancer, their treatment, and taught them how to ask for help from their family. They taught the patient cognitive techniques to turn negative thoughts to positive and breathing exercises to relieve stress.

Overall the companeras taught the patients to take more control over managing their own health.

The therapy provided by New Dawn companeras is normally only available at cancer clinics by clinical psychologists and not accessible to someone on Medicare or Spanish speakers.

Just as important, the companeras were someone to talk to anytime either by phone or in person.

Josie Mejia, one of the two companeras, said the counseling sessions were beneficial to her also. “It was very educational for me, too. I met some very strong women, warriors.”

Results

The research component evaluated the effectiveness of counseling on the patient’s health outcomes and the biological aspect measured the level of cortisol in the patient’s system.

Cathy Samayoa, project leader of the biological samples leg of the study, said that biomedical research improves patient care but that “the lack of Latino representation in research studies contributes to health disparities.”

Samayoa said the baseline data from the samples taken indicated that the cortisol activity was abnormally high in over 1/3 of the Latinas with a breast cancer diagnosis in the study.

The final results on whether the peer counseling lowered the levels of cotisol in the patients will be available in about five months.

Napoles gave preliminary results from the effects on health outcomes from the therapy provided by the companeras.

Data was collected on the patients before the project started, at three months, and then at six months.

Though the final results are not in, Napoles said that initial results show that counseling reduced anxiety and symptoms of their illness and treatment. The therapy also increased the patients’ ability to relax, cope with their diagnosis and ask for support from their family.

The final results will evaluate the patients’ health outcomes.

Edelmira Ramos, one of the patients who was diagnosed with stage 4 cancer and had a mastectomy, said that when she was told she had cancer “it’s like your life is ending.” She said her companera taught her how to talk to her family about it and accept her diagnosis.

“I hope the program goes forward because we do need the help,” Ramos said.

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