Ivis Sampayo was just 38 years old and the mother of two young boys when she was diagnosed with breast cancer. She underwent surgery and nine months of chemotherapy, which made her ill and caused her hair to fall out. Her husband was very supportive, but “there were things I kept from my husband because I didn’t want to frighten him more,” she says.

Sampayo’s ethnic background likely played a role in her reticence. Although she was born in New York, her parents came from Puerto Rico. “The cultural heritage is to protect our family,” she says. “So, you keep a lot inside. I still do.”

Sampayo had strong family and social support and good access to care. But that’s not the case for many of the 8.5 million Latinas in the United States who are diagnosed with cancer, researchers say, and breast cancer is the most common among those diagnoses.

Some of these women live far from family, and many face language, literacy, and economic barriers. Those factors—often accompanied by a belief that cancer equals death—can lead to increased distress for Latinas and their families and friends, making their recovery more difficult.

Indeed, studies have shown that among breast cancer survivors, Latinas experience more depression, pain, fatigue, and strained relationships with their husbands and other family members than do non-Latinas. Yet, few studies have looked at interventions that may help.

Patient Involvement Is Invaluable

Now, Sampayo is a co-investigator on a new PCORI-funded study aimed at finding out whether participating in culturally relevant support groups—called “workshops” to avoid any cultural stigma—improves quality of life for Latina breast cancer survivors and their caregivers. Kristi Graves, PhD, of Georgetown University in Washington, DC, is leading the study.

The research team defines a “survivor” as any woman who has been diagnosed with breast cancer, regardless of stage or time since diagnosis. Workshop content is based on a program developed by cancer survivors and mental health professionals at a Washington, DC, cancer-support organization, Nueva Vida.

The organization’s members asked Graves to evaluate the project. Breast cancer survivors provide critical input to the new study. Community partner Margaret Darling says that from the survivors, “we really get a sense of what issues were going on in their lives. This intervention focuses on the topics most important to them."

"Having patients contribute to the design of research is invaluable, and for this project, it couldn’t have happened any other way,” says Graves, who cared for her mother who died of breast cancer in 2000 at age 55.

Nueva Vida is one of four community-based cancer-support organizations that will serve as study sites. The others are Latinas Contra Cancer in San Jose, California, and Gilda’s Club and SHARE in New York City. Sampayo—who has worked at SHARE since 1996 and is now its senior director of programs—serves as the study’s principal investigator at that site.

The study will enroll 100 Latina breast cancer survivors. Each woman will identify one caregiver—a spouse, partner, adult child, other family member, or friend. Survivor-caregiver pairs will be randomly assigned to usual care or to a specially designed workshop. The workshop will focus on such topics as improving communication with family and healthcare providers, managing treatment side effects, and intimacy after cancer.

Even women treated long ago may still benefit from the support, according to Sampayo; side effects can persist for years, and there is always the fear that the cancer will return. “Members of our support groups become like family and look forward to connecting and helping one another,” she adds.

Sessions will be conducted in Spanish unless group members mutually decide they prefer English. Survivor and caregiver partners will attend sessions at the same time but in separate rooms, so each individual can express concerns without worrying about upsetting his or her partner.

Caregiver Focus Is Critical

Including caregivers in this study is extremely important, as their needs are typically unmet, Sampayo says. “The caregiver tries to help and support the survivor, but they’re not receiving the support they need,” she explains. “They may be frustrated, tired, frightened, but they’re not going to say ‘I’m scared witless that you might die on me, and I’ll have to raise these two kids by myself.’ I’m sure that’s what my husband was going through.”

Says Roberto Londono, who attended the Nueva Vida caregiver program and who is now a partner in the study: “They told me how to go about treating my wife. They would say, ‘When you come home, don’t treat her as if you’re sad. Treat her like normal.’” At each session, they would ask him how things had gone and then give practical suggestions, such as what, how, and when to feed his wife.

All workshops in the study, whether led by mental health professionals or by trained survivor peers, will deliver the same content. Questionnaires—created with survivor input—will assess quality of life, communication, satisfaction with cancer care, and workshop characteristics. Study results will be shared through outreach efforts to more than 150 local and national groups that provide care and support to thousands of Latina breast cancer survivors and their families.

Graves says working with survivors like Sampayo in this community-based study format is “leaps and bounds” more patient-centered than any previous research she’s done. “Before, we would just ask people the questions we thought were important,” Graves says. “This format has flipped it upside-down. … It’s a dynamic process in which we’re continually learning what survivors and caregivers need and how to best address those needs through the research.”

Sampayo, in turn, appreciates working with a trained investigator. “Kristi Graves understands the research aspect of it and what needs to be put in place, but at the same time, she’s willing to listen to what we have: our knowledge about the community and survivorship issues.” Londono says that being part of the study has been “very positive. … It’s so satisfying that at a national level, this is flourishing and moving forward.”

Posted: January 17, 2014